|| Transplant Buddies Stories
Message From A Caregiver
My name is Adrienne Steiner. On
September 12, 1990 my husband Bert & I had a heart
transplant. Oh, no, no, no, I don't mean that I was
wheeled into the operating room on a gurney, had my
diseased heart taken out and a new heart put in. Bert
did that. I was the one who walked the hospital
floors at Jackson Memorial Medical Center from 10:00
p.m. in pain waiting to hear whether the new heart
started beating in my husband's chest when it was put in
at 4:00 a.m. Oh, no, no, no, I'm not the one who takes
Cyclosporine, Imuran and Prednisone every day. Bert
does that. But I am the one who - when 10:00 a.m.
rolls around says to Bert, "Did you take your pills at
7:00 a.m. this morning?" That's when he tells me, "Oh,
that's a good idea."
I'm the one who rode the roller coaster
first year post transplant with Bert, four rejections
each one followed up with 100 mg. of Prednisone. Wow,
talk about mood swings: he even has a shirt that was
made for him showing a man doing the swing dance and it
says mood swing on it. We were married 30 peaceful years
at that time and it was the first time he had snapped
back at me. He's still apologizing that it was the
Prednisone. And no, no, no, it's not me who gets the
angiograms and biopsies. Bert does that. I'm the
one who also gets up at 5:00 a.m. to get to Jackson by
6:30 a.m. and dutifully sits somewhere in the hospital
waiting to drive him home 12 hours later.
I'm the one who accompanies Bert to the
Internist, the Dermatologist, the Urologist, the
Gastroenterologist, the Neurologist, the Orthopedist,
the Ophthamologist, the Cardiologist and the Whatever
Other Part need a specialist. I'm the one who rubs
Bert's fingers during dinner when he gets cramps in his
hands. I'm the one who rubs salve on body parts he
cannot reach because the Dermatologist tells me to do
I'm the one who runs for the walker or
cane when his hips cannot get him to move another step.
I'm the one who picks him up when his blood pressure has
dropped and so has he. Ask me about that sometime. I'm
the one who bathed him in bed when his hips were
operated on and he was in a wheelchair for 3 months. Ask
him about that one. I think he really liked that.
I'm the one to tell him to please order
the fish or chicken instead of the hamburger. I'm the
one to tell him to please order the sherbet instead of
the cheesecake. I'm the one to hold the stepladder when
he absolutely cannot wait another minute to take down
the dead frond on the top of the palm tree. I'm the one
to hand him the SPF 15 and a t-shirt and floppy
hat-over-the-ears hat when he wants to walk
O.K., so now WE have done all of this
together for the past 11 years. And now ask me if I'd
like to do it for another 30 or 40 years. Absolutely,
because I want to keep him around for as long as I can.
The past 11 years may not have been a pleasure every
moment, but it has been my pleasure to be my
husband's caregiver. I am grateful for every day. I am
grateful for his donor. I am grateful for the 4
grandchildren we have been able to enjoy for the past 11
years. I am thankful for meeting all the wonderful pre
and post transplant recipients and donor families we
have met during this time.
I am proud of my husband for giving
back to transplantation by running the Have A Heart
transplant support group for all these years and for
helping the cause of reaching more organ donors. Have we
both really had a heart transplant? Nah, but our
jobs are really similar - to be upbeat at all times for
each other - have a positive outlook - and be absolutely
compliant with doctors orders, and have the absolutely
best time of our lives, every day of our life. Thanks
for listening to OUR story. God Bless all of you.
From My Heart,
Andrew Wilson: The Journeyman
Hi. My name is Andrew Wilson. I am 26
years old and live in the North West of England. I
underwent a Heart Transplant at Harefield Hospital back
in December 1987 and became the World's Youngest Domino
Transplant along with my donor Samantha Dawkins. Here is
Stormy Waters Ahead
It all started when I was ten days old
and I contracted suspected Meningitis, the virus
attacked my heart muscle, the doctors at Warrington
General Hospital also suspected I had also suffered from
a stroke leaving me with slight brain damage and a
weakness down my right side.
My early life was spent in and out of
hospitals, suffering from many chest infections and
viruses. I was placed under heart consultant Dr Arnold
at Myrtle Street Children's Hospital in Liverpool. I was
placed on a cocktail of drugs from an early age such as
digoxin, frusimide aimed to stop my failing heart.
As I grew older into my childhood, my
condition worsened and I was un able to do the normal
things kids did back then, I was a mad football fan and
was unable to play football or walk very far without
feeling breathless and tired.
As the years drew on it was decided to
transfer me to Harefield Hospital as Dr Arnold had told
my mum (Sue) and dad (Bryan) that there was nothing more
they could do and that I needed a heart transplant, so
we waited for the call to go down to Harefield…
Transplant Years- The Gift Of
Finally we got the call to go down to
Harefield and little did my parents and I know the life
changing effects that one journey would have…
I underwent the tests and expected to
be home in time for Christmas after being put on the
In the early hours of December 17th,
1987, I was visited by none other than Professor Sir
Magdi Yacoub and after seeing me told my mum and dad
that I needed a heart transplant and there was a
heart available that very night!
A young Scottish girl named Samantha
Dawkins who had suffered from cystic fibrosis needed a
new heart and lung transplant and had decided to donate
her heart for transplantation.
Both my parents were left with little
time to decide on the life saving operation, but woke me
later that night and told me I was going to have a heart
Funny as it sounds, my parents told me
I was in high spirits as I went down to theatre; my
parents then said good bye and my life was about to
The operation itself went on for nine
hours and after a few hairy moments placing me on the
life support machine, the operation was a success.
I spent over six months at Harefield
and in that time lived in Harefield Village in the
designated flats for the patients well before Parkwood
Eventually I was able to finally meet
the young girl who had saved my life and soon enough we
had struck up a friendship I was given a St Christopher
medal with the message "With All My Heart Samantha." I
also gave her a golden heart locket, the gifts
symbolised the bond between us.
I had expected setbacks with rejection
in the early days including a biopsy which had gone
wrong, a surgeon accidentally went through an artery in
my neck causing blood to flow into my chest and lungs, I
was then placed into intensive care where eventually I
Despite that my childhood from the age
of nine changed for the better as I was finally able to
play football, run in local school races and do
everything my fellow friends could do, it was indeed a
whole new experience and a welcome one!
Whilst down in Harefield both Samantha
and myself had the opportunity to meet H.R.H. The
Duchess Of York when she opened at the time the new
intensive care unit.
We also appeared on such programmes as
T.V.AM and Bodymatters, and were interviewed by the
national newspapers (I guess you could say we were
I also helped in fund raising for
Harefield and the British Heart Foundation. Being a
Liverpool fan I was also lucky enough to have my
childhood dream granted and became the mascot for the
reds back in 1988.
"My Heart Is Yours"
For eighteen months both Samantha and
myself enjoyed a bond beyond friendship, we often kept
in touch taking a holiday to Blackpool, as well as
spending time together at Christmas.
As time drew on Samantha unfortunately
contracted a virus and desperately needed a new
transplant, though sadly this time there wasn't a donor
available and she died a day after her 17th birthday in
1989. I take comfort in the fact that a part of Sam
still lives on inside me, and that I got to see her
before she died.
After Samantha's tragic death, I
appeared again on T.V.A.M talking about the need for
donors. Since then, though I have found it hard, I have
tried to move on. I still keep in contact with
Samantha's family (Liz, Roger and Jason).
Health wise I have gone from strength
to strength with only my last rejection in 1993 and a
heart rhythm disorder in 1996. I was then placed under
Dr. Banner; I then underwent a small procedure to stop
and restart my heart, thankfully it worked and with the
help of medication I recovered...
Flash Back - Be Positive in
With regards to my schooling I attended
Hamblett School which was a school for children with
disabilities as I also suffer with cerebral palsy, I
eventually left after my transplant and moved into main
stream where I then moved on to college gaining a
G.N.V.Q in business studies at Distinction level and
also a G.C.S.E In both English Lit and Language grades A
for course work and B and C for the respective exams. I
also studied on a creative writing course gaining
university credits though I did not take up that option.
Despite my limited school access before
and after my transplant I was still able to achieve my
goals within education with a positive determination
that I am indeed proud of!
Message Of Hope!
This December, is my sixteen year
anniversary and looking back I am eternally grateful to
Samantha and her family, not to mention all the doctors
at Harefield, for their continuing dedication and
support to fellow Transplants like myself. Despite some
challenging times my transplant has given me and many
other people years of happiness and long may it
A New Century, A New Man.
I am now a singer/songwriter and was a
member of the British Music Academy, I have written for
Eurovision with a track called "Come Together", back in
2001, and was later aired on "Radio Merseyside." which
was a huge boost. I have also written for a local arts
theatre in 2002. It is now 2004 and I’m preparing to go
into the studio to lay down some of the tracks I have
written including an animated cartoon like track "Where
Are You Now" which I hope to pass on to future
I am also a keen writer and have
written both novels and poems in the past. I have
decided to end the story but not the journey with a poem
I wrote a few years after my heart transplant, which I
hope you enjoy.
No football, no
No running, no hiking,
Bleep goes the
You lie there so weak,
Why is life so
With the oxygen mask,
Life's a uphill
Oh donor come fast,
And save me at
A donor is found,
Put your feet on the
And jump up for joy,
Life's changing my
Yes to football, Yes to biking
running, Yes to hiking,
No more bleeps from
dreaded machine, Life is better than ever it's
Your no longer wistful-
As you run in
Thanks to the gift of life,
problems may pass...
This poem was written when I was Eleven
years old and is dedicated to the lasting memory of my
donor Samantha and all who have helped me through the
years: A big thank you to all!
And So The Journey Continues...
My name is Andy, and I live in Halesowen, England. On the 5th of October 1998 I had a heart transplant at the age of 37 after suffering from a heart disease called Cardiomyopathy which causes the heart to become enlarged.
During July 1998 I had a cough that my GP doctor could not cure after several visits to see him, during which time I was becoming more and more short of breath. On Saturday 1st August 1998 I was admitted to Wordsley Hospital in Stourbridge onto the medical admissions ward, where I was diagnosed as having fluid on the chest affecting the heart. Three days later I was put on the medical ward, where the doctors diagnosed an enlarged heart or Cardiomyopathy (a disease which can be hard to detect in the early stages of its development) and told to have total bed rest. On the following Sunday I had two heart attacks and was put on the Cardiac Care Ward, where I was sent for more tests including echo and CT scans. The doctors tried to treat the heart condition, but with no success.
Then one day Dr. Forsey, my doctor, came and told me they were sending me to the Queen Elizabeth Hospital in Birmingham for assessment, at which time I said to him is it for a transplant and he said yes. I was transferred by emergency ambulance with blue lights and siren on. It was the August bank holiday weekend. On arrival the ambulance was met by a porter with oxygen, and another porter stopping people using the lift, and I was rushed to the cardiac high dependency unit. At the time I was not aware of what was happening, I woke up the next day with tubes and drips attached to me. Over the few days I was sent for various tests. On the Monday the Consultant, Mr. Bonser, told my family and I that my only hope was a heart transplant and I was put on the transplant list. Two days later I nearly had a transplant but the heart was no good. I was then sent back to Wordsley Hospital to wait for a transplant.
Over the next few weeks my condition deteriorated more and more and the need for a donor heart became more desperate. During that time my weight went from 72 kgs (159 lbs) down to 46 kgs (101 lbs). Then, on the evening of Sunday October 4th at about 9pm, a nurse came and said they needed me at the Queen Elizabeth Hospital as there was a chance of a transplant. I was transferred again by emergency ambulance to Queen Elizabeth Hospital where I was joined by my family and waited for a yes or no decision. At 12:30am Sharon from the transplant team came and said the transplant was on and I would be going to the operating theatre soon. The last thing I remember before the operation is the needle being put in the back of my hand; the time was 01:10 hrs (1:10am).
I was kept sedated for two days in intensive care after the operation, after which I was moved to the High Dependency unit. The first thing I remember is talking to a nurse as I was moved to the ward. While on this ward I was given a blood transfusion, and then I caught a urine infection for which I was treated. After a further two weeks I was moved to the normal cardiac ward, where I started to improve. After another week I was allowed home, 3 weeks after the transplant after spending a total of 14 weeks in the hospital. I was sent carrying a large box of drugs!
I spent the next 6 weeks in and out of the hospital, once with rejection, once with a stomach problem and a collapsed lung and with another related problem. I finally came out of the hospital the week before Christmas 1998. And returned to work as a gardener at Birmingham botanical gardens 13 weeks after the transplant -- I did this only after the doctors said it was ok to do so. I returned to the hospital for regular check ups, initially 2 times a week, then once a week, once a month, every six weeks, every 2 months, every 3 months and now every 6 months.
I am now a member of The American Transplant Association so I can give support to patients wherever they live. I was the first person from England to join this Association.
Recycle life be an organ donor
Rich and Dead
Bill Wohl figures he’s had about thirteen miracles in the last six years. And he’s not tired of counting. Two 100% blocked arteries, a heart attack, a total artificial heart, two thoracotomies and finally a heart transplant – he’s had quite the journey.
I met Bill in 2003 in Nancy, France, where we were both competing as transplant athletes at the World Transplant Games. The Games are Olympic-styled competitions for people with life-saving transplants, and they take place in a different country every two years. There are also U.S. Transplant Games, held in different cities every two years. When I met Bill in France I was struck by his warmth, caring, generosity and kindness. As I was to learn later, this was not how he used to be; these were traits he now says he inherited along with his heart.
Bill is a man who had been totally driven in his life. A serious athlete since the age of four, an elite high school and college track and field athlete, a professional Box Lacrosse player – he was a jock, a hot shot by his own admission. But when he realized that he could earn seven times the money as an entrepreneur rather than as an athlete – he was not quite a Lance Armstrong, even though they share the same birthday and the same passion to push beyond limits and escape death – he decided to turn his passion to upscale satellite and electronic systems and the needs of the rich and famous who wanted his services.
He left the world of sports behind and went on a different fast track, setting up satellite and home theatre systems for the Phoenix Suns, Michael Jordan, Charles Barkley, the 1996 Olympics in Atlanta, Championship fights, the 1998 World Cup Competitions, and the King and Queen of Saudi Arabia, just to name a few. Bill likes to say, with a grin and a glint in his eye, "I’ve always had a boring life."
His business was everything. He wasn’t at all interested in helping others or reaching out to people less fortunate. It was money and business, twenty-four/seven. He and his wife built a 9,250 plus square foot home in the mountains Pinnacle Peak area of Scottsdale, Arizona. Lobster, crab, shrimp, pork chops and gravy were the standard dinner fare for them and their children. Overworked, overweight and stressed from the lifestyle he had created for himself, he got very sick. On Easter Sunday 1999, after seven hours thinking he had food poisoning, he went to the emergency room, feeling ill but unaware that he had just had a heart attack. With two arteries blocked one hundred percent and one blocked seventy-five percent, the doctors couldn’t understand how he was still alive. It seems that an untreated jaw infection released plaque into his arteries, causing the blockage. Even though he had an angioplasty with two stents to open the two most severely blocked arteries, his heart was significantly damaged from the heart attack, and he was left with only fifteen percent heart function. Over the next six months Bill was hospitalized seventeen times. The man who was used to pushing to the limits now found he could only do half of anything before he had to rest. He was exhausted, weak, and told he needed a heart transplant if he were to survive.
The problem was, he was too sick for a transplant and could not get on the List. The doctors said they wouldn’t waste a heart on him, they didn’t think he’d survive the surgery. The jaw infection that caused the heart attack was still there and wouldn’t go away. During one of his many hospitalizations in the spring of 1999, his heart stopped, and Bill had to be paddled three times to get his heart beating again. In addition to heart failure, his liver, lungs, and kidneys were also failing. He was given diuretic medications, and they removed fourteen pounds of fluid from his heart and a pacemaker, defibrillator, computer implant during one stay. He got pneumonia. He was a mess.
At that point, Bill received his first transplant, but it was not with a human heart. It was with a device called a Cardio West Total Artificial Heart, an amazing new technology that serves as a bridge for some of the people waiting for human hearts that are not available. Bill’s heart was removed, the artificial heart was sewn in its place, and tubes, or lines, were connected externally to a huge machine the size of a washing machine that weighed four hundred pounds. This amazing piece of technology has saved many lives. The average length of time a person spends on a Total Artificial Heart is thirty to fifty days, by which time a human heart hopefully would become available. But Bill was on the artificial heart for one hundred fifty nine days, and for the entire first month of that time, he was in a coma. The Doctors never expected him to wake up! When he awakened he couldn’t talk, walk, or eat, or even stand and had to learn all of that again, starting from scratch.
After he awakened from the coma he caught Klebsiella, a gram negative rod infection that was running rampant in hospitals then. He needed seven blood transfusions, two thoracotomy surgeries, and at one point, four IV’s on each arm, pouring in state-of-the-art antibiotics to try and kill the infection. When Bill could walk again and the infection was gone, he started working out in the hospital gym. The Doctors just shook their heads because no one survives Impaema especially on a device. Of course he couldn’t go anywhere without his entourage: the four hundred pound Artificial Heart machine, an engineer, a nurse, his wheelchair, and IV poles. When they got to the gym, the machine was plugged into the ceiling for the necessary electricity and air circuitry that kept the Artificial Heart going. With time and much effort he became stronger, and was eventually able to work out in the gym seven days a week, accompanied, of course, by his entourage. By this time he was number one on the heart transplant list, but no heart his size and blood type was available.
Michael Brady was only in the fifth grade when he wrote an essay saying that he wanted to be an organ donor. As he grew up he was known for his kind and warm heart. He was a spiritual, deep feeling man. It was in his nature to help people, and still waiting to achieve success and recognition as a Hollywood stuntman, he wanted to help those less blessed even though he was just getting by at the time.
Brady Michaels (that was his screen name, and became his legally changed name) was meticulous in his work. Every stunt was carefully planned, down to the minutest detail. He was driven to be the best in his profession. He was thirty-six on the day tragedy struck. While preparing a stunt that involved a train boxcar, Michaels slipped on an extension ladder and fell, hitting his head, crushing his skull on a river rock. It was an irony that the man who had performed so many dangerous stunts without injury was brought down by a fall from a still, standing ladder. On the fourth day after his accident, Brady Michaels was declared brain dead. His family agreed to donate his organs.
Bill says, "On February 22, 2000, God truly blessed me with the best heart. I remained in the hospital for two months, finally going home to celebrate my daughter’s eighteenth birthday. Amidst all the challenges I faced with rehabilitation from my transplant, I was keenly aware that my values, feelings, and life choices were mysteriously shifting. As miraculous and monumental as my heart transplant was, I just couldn’t attribute the changes to that. I knew there was something very profound happening. Eventually, when I met my donor’s family, the information I learned both astonished me and made total sense."
At first, though, Bill Wohl knew nothing about his donor because information about donors and recipients is kept confidential, out of respect for everyone’s privacy. If, at some later date, everyone wants to meet, information can be exchanged at that time.
"I was a classical Rock music buff, but after my transplant I began listening to more jazz. One day in the car, listening to a station I never tuned into before, I heard a song by the artist Sade. I broke down and cried, and couldn’t understand why the song struck me so hard. Then, nine months after my transplant, I had my first contact with my donor’s family. After we spoke, I sent them a CD with some of Sade’s songs. I told them that it moved me and I didn’t know why, but that I wanted to share the lyrics with them. I spoke with Michael’s Brother Chris and he said that Sade was one of Brady’s favorite artists. He also told me that Brady loved to drum, since he was a kid with a drum set, something I had never done and wasn’t at all interested in."
And there was more. Before he became so deathly ill and needed a heart transplant, Bill was primarily focused on business, how to get ahead, and how to make money. He wasn’t interested in helping others, just looked after himself, his family, and his satellite business. Now he was filled with compassion, looking for people to help. He has created a foundation to Promote Donor Awareness, Transplant Athletics and Scholarships for Kids. The once tireless efforts to promote his business are now turned to promoting organ and tissue donation.
Life is more balanced than before. He would never go back to the insanity of the days before he got sick, but he loves to work out and push himself. One day’s typical workout schedule would include a twenty-five to forty mile bike ride at the crack of dawn (it gets hot early in Scottsdale), followed by some breakfast and a little business, then a run, some serious weight lifting, stretching and core work, and on a good day 1200 to 1600 meters in the pool. Then back to work for a few hours.
He attends the U.S. and World Transplant Games and other International Games, winning medals in cycling, track, and swimming. When he’s not working out or competing as an elite athlete in one or another event, Bill is busy interviewing with the media. His picture was on the cover of Life Magazine; he’s been featured in People Magazine, National Public Radio, Fox TV, NBC, PBS,ESPN, and more. All of this is done with gratitude for Brady Michaels, his donor, and with a total zest for life.
Bill found himself craving salads after his transplant, and the rich diet he had loved before, fell away. He learned later that, Brady Michaels had gone through a cleansing period, eating salads and giving up rich foods.
And of course, Bill finds himself drumming at any odd moment, in the gym or anywhere there’s something handy for tapping out a rhythm.
Hi, I’m Bob Pitcock. I am a heart transplant survivor (17 years out), from Houston, Texas. I received my transplant back in 1991 at the "Texas Heart Institute" at St. Luke’s Hospital. I designed this T-shirt (see photo), with my own personal sketch of a "Lit'l Praying Boy", with a phrase out to the side, honoring organ donors and their families. That phrase came directly from my heart.
I correspond via email with several heart transplant recipients in England nearly every day. Some of us have a lot in common, as we are accomplished musicians with heart transplants.
One of my hobbies is old cars, and this is my favorite photo - my 1957 Ford Fairlane 2-door hardtop, back in 1987. The local newspaper published an article about me.
I'll always remember April 1st 1985. That's the day that I experienced my very first heart attack. I was 45 years old at the time, and thought that I was in very good healthy condition. Unknown blockages in my arteries around my heart let me know right fast that I was in deep trouble. I spent 6 days in the hospital, requiring a cath exam, then medication to control my cardiac system. The following year, in December 1986, I was taken from my 18 wheeler, and transported to a hospital again. This time, my hospital stay required a double bypass open heart operation. I recovered from that and went back on the road, trucking again. Everything went great until December 1988. While I was singing on stage at our local C/W show, I had another heart attack, right up there, behind the microphone.....rushed to the hospital.......got stabilized, after 8 days, then went back to trucking again. I was feeling fine for the next 11 months, then the big one hit. This time, the heart attack, after all of the others, had weakened my heart so much, that my Cardiologist, Dr. Manviwalla, suggested a complete heart transplant. I don't really know all of the medical technical names for my heart troubles, but there were about 3 different reasons. About 40% of my heart muscle was damaged. I went through a 4 day workup, at St. Luke's Hospital in Houston, Texas to determine whether I was a candidate for a transplant. NO PROBLEM....I was immediately put on the waiting list. 9 months later, I got my call from the transplant coordinator to come on down, that there was a donor heart available in Florida. A surgical team boarded a jet here in Houston and flew all the way to Florida to harvest the donor heart. In the meantime, 17 people showed up at the hospital to offer their loving support.....all of my children, my parents, my sisters, and brothers-in-law. The surgical team arrived back in Houston, and my transplant was performed in the early morning hours. I was told that the operation only took less than 3 hours. I won't go into all of the details of PRE and POST procedures, because we all basically have the same things. 16 days after my transplant, I was released to go home. HOORAY!!! I have had no rejection episodes at all, in almost 17 years. My 17 year annual checkup is on Jan 30th and 31st 2008. I only go in for an (outpatient) checkup, just once per year. The only complication that I've had.....a stint was inserted back in 1998, because of a slight blockage. I am now retired from trucking over the road, and spend a lot of my time spreading the word about Organ Donation. I personally sketched a picture of a "Lit'l Praying Boy", to honor all organ donors and their wonderful families. I ordered 20 Tee-shirts, with this sketch, and mailed some of them to my heart transplant pals in England UK & Australia. I truly enjoy corresponding VIA email, with other recipients from all over the world. The best advice that I received post transplant: TRY YOUR BEST TO NOT BE AROUND PEOPLE WITH NEGATIVE ATTITUDES...it's worked really well, by golly. "St. Peter just keeps on dusting off my Welcome Mat"
Some people try to turn back their odometers. Not me – I want people to know why I look this way. I've traveled a long way and some of the roads weren't paved…with this heart transplant of mine, by golly...living & loving it, though…stay HAPPY & don't let negative people pull you down. When you see someone without a smile, give them one of yours. Happiness seems to rub off on others…Laugh & roll with the flow. Being POSITIVE is not an impossible task…TRY IT-YOU'LL LIKE IT!!
When I was a child, I always believed
in fairytales and the unbelievable. I had a huge toy
castle with knights and horses and I believed in
chivalry and righteousness. My dad taught me to be
strong he said that I could do anything I put my mind
to. His motivation prepared me to be a fighter.
In September of 1989 I was struck on my
motorcycle by a sanitation truck that came up a one-way
street the wrong way. When they brought me to the
hospital, doctors found that I wasn't injured from the
accident but there was a spot on an x-ray just below my
Adams-apple that wasn't supposed to be there. After a
biopsy, it was diagnosed as Hodgkin's disease. At the
time, I thought any kind of cancer was a death sentence
but my doctor assured me that it was curable. They
removed my spleen to stage the disease and after doing
so told me that I was still stage one because it hadn't
spread. I was treated with radiation for a month and
afterward my oncologist told me that I was in remission.
Two years later I lost gradually lost
my voice while singing with a band. When it didn't
return I went to the oncology unit for a check up and
was told after several tests that the lymphoma had
returned this time they removed my appendix and several
lymph nodes in staging its advancement. I was given 13
courses of chemotherapy and was again declared in
A month later a CAT scan revealed
another spot. This time it was in my right lung. The
lower lobe was removed in order to biopsy the mass.
Again, it was Hodgkin's. The only hope for me was a bone
marrow transplant. I went into the hospital for what was
supposed to be three months while they completely broke
me down with high doses of extremely toxic
chemotherapy's. It was so strong that it killed the
cancer but also destroyed my entire immune system. At
that time the slightest infection could have killed me.
I was the boy in the bubble. However, after receiving a
stem cell transplant where my own cells removed, blasted
with radiation to kill any cancer, and re-injected, I
made it out of the unit in just 21 days. It was a
I was recovering well but six months
later I began to lose my breath. I thought it was asthma
but it got so bad that I couldn't strum my guitar. When
I went to the cardiologist he ran several tests and then
told me that I was in congestive heart failure. My heart
was enlarged and I was given two months to live. He said
that a transplant was out of the question because of my
past history of cancer even though I was in remission
over six months.
I wrote a letter to Dr. Drusin at
Colombia Presbyterian asking what my chances were if
there was any chance at all of being listed. He
contacted my doctors and decided that if I was in
remission a full year that they could transplant me. I
waited out the year and was given special IV medication
that helped keep me alive. In the end I was admitted
into the hospital where I waited three and a half
months. On March 17 1996, I was transplanted.
I'll never forget the feeling of waking
up and finding that my feet were warm for the first time
After that, I met my wife Nancy while
performing at a cabaret show. I proposed to her at a
transplant party hosted by the Gift of Life. A few
months later I developed osteoporosis and it became so
bad that I had to have a total knee replacement of my
left knee. Following that there were two elbow surgeries
to remove calcium deposits. (My friends call me Spare
Parts.) I thought she wouldn't stick it out but Nancy
stood by my side and we were married October 12 1998.
Then the greatest miracle of all
happened. Nancy became pregnant and we had twin boys
Jonathan and Daniel on October 27 2000. I will never
forget the feeling of holding them in my arms for the
first time. I am the home parent during the day and I
have to say that being a dad is the greatest thing I
could have ever lived for. I owe it all to the person
who donated their heart so that I might live. The only
way I know of to say thanks is to help the next person
P.S. I saved my toy castle from years
ago in hopes that I would have a child. Can you believe
A Change of Heart
On Easter Sunday, March 31, 1991, I had
a change of heart – literally! On that date I was the
joyful recipient of a heart transplant. A procedure that
had become almost routine to the medical profession was
an answer to prayer to me in the form of a 20th century
My two-year struggle with heart disease
at the age of 44 began on March 11, 1989. Early that
morning I suffered a major heart attack.
I was not in the high-risk category. I
never smoked or used non-prescription drugs, and I
jogged two miles three times a week. Later, I asked Dr.
Burke, my internist, why it had happened. He said, “It
should not have happened." He could not explain the
Recovery from the heart attack was both
a physical, emotional and spiritual journey. I was
terribly angry with God. I asked Him: “Why did you allow
this to happen – I have done everything I was suppose to
do." Little did I know, but my difficulties and trials
with my heart had only begun.
I returned to work in June 1989. On
July 12 My friend, Dewey Lyall, and I were going to
lunch together. He needed to make a stop on the way to
pay a bill so I went ahead and he would join me at the
restaurant. The instant I walked into the restaurant I
felt faint, weak, and dizzy. I sat down at the first
table I saw. The next thing I knew was that I was lying
on my side on the chair beside me. Dewey came in about
then and an ambulance was called.
On the way to the hospital I heard the
medic declare that He could not find a pulse. In the
emergency room I heard a nurse twice say: “No pulse, no
pressure." I remember being told, also, that I was not
going to die.
My next memory was being in the
Coronary Care Unit (CCU) on a ventilator. My wife,
Sylvia, and my son, Mike, were with me. My arms were
tied to the bed rail so I would not pull the tube out of
my throat. The next day, Dr. Clark, came to visit me on
rounds. He was the cardiologist who took care of me in
the emergency room. I said to him; “I guess this was
serious?" He replied: “You were close." I asked him if
he had said that I was not going to die. He replied that
he had not and that no one else in the room had said
I pondered that reply for a couple days
and realized that no human voice told me that. In
retrospect, it was the most comforting and loving voice
I had ever heard. I had no reservations or doubts about
its claim. I believe that voice was from God.
I learned from Lisa, my nurse, that I
had an attack of Ventricular Tachycardia (VT) or “Sudden
Death". VT occurs because of a failure of the electrical
system in the heart. It is a rapid fire, ineffectual
beating of the heart that often leads in death.
After several tests of my hearts
condition, my cardiologist recommended to me the use of
an Automatic Implantable Cardioverter Defibrullator
(AICD) system to control my heart rhythm problem. An
AICD consists of a pulse generator implanted in my
abdomen with lead wires to the heart. It works in
reverse to the operation of a pacemaker. The AICD senses
when the heart beats too fast. If this occurs the AICD
delivers an electric shock directly to the surface of my
heart halting the arrhythmia. Mine was implanted in July
In the next 20 months the AICD returned
my rebellious heart to a normal rhythm many times. It
discharged several times unnecessarily. This was when I
had short urns of VT, which would have corrected itself,
but the AICD did not know the difference.
The Waiting Game
By the fall of 1990 my heart had
weakened to the point of being in heart failure. I would
become short of breath and fatigued when walking up
stairs, taking a shower, or performing the simplest of
chores. During the previous February surgery was
performed to help remedy the frequent arrhythmias. But
it was only partially successful. By this time Doctors
had begun talking to Sylvia about a transplant for me. I
recall one day when I was still hospitalized walking the
hall with Sylvia when she brought up the subject of a
transplant. I was stunned that she would make such a
suggestion. My response was immediate and strong – No
heart transplant for me. I did not need one.
During the next few weeks, Sylvia and I
struggled to deal with the issue. By mid-October we had
come to the conclusion that I should have the
transplant. In mid-November I was accepted as a
candidate for a heart transplant at the George
Washington University Medical Center. I was placed on
their waiting list. I was told that it would be about a
yearlong wait to the transplant.
The following months were tense. There
was always the possibility that a heart would become
available. Sylvia and I had to be ready all the time.
Thanksgiving came and passed. Christmas and New Year’s
came and went – and not heart. In early January 1991 my
heart failure became so severe that I had to be
Sylvia and I became friends with Gene
and Barbara Hozaphel. Gene was just a few rooms down the
hall from me and he too was waiting for a transplant. We
would visit each other when our strength allowed it.
On Saturday night, March 30, 1991, I
learned that a donor heart had become available. The
donor was a 21-year-old man who was the victim of a
traffic accident. It was about 11:00 p.m. when the
transplant coordinator told me, “…we have a heart for
you." I immediately called Sylvia and Mike. Mike was
home from college on Easter break. Sylvia, Mike and
Sylvia’s parents were at the hospital around 1:00 a.m.
on Easter Sunday. The process began for the life-saving
On Sunday morning I was taken to the
operating room. My surgeon would be Dr. Benjamin Aaron.
He was the surgeon who operated on President Reagan when
he was shot. I told Dr. Aaron to be sure to take out the
AICD. The operation began later that morning and was
completed by early evening.
Recovery from the operation was
difficult. For the first week I was in isolation to
protect me from infection. I was in the “Reagan Room" –
the room in which President Reagan recovered since it
could easily be guarded by the secret service. When
Sylvia and Mike visited, they had to wear gowns, shoe
and hair coverings, and masks. I developed a serious
bout of pneumonia and was extremely week.
Upon being released from isolation I
went to a regular room. Visitors still needed to wear
hospital garb to protect me from infection. I had the
use of an exercise bike in the room and was encouraged
to use it. Gradually, I became stronger and on May 8 I
was discharged and returned home. It was a momentous
The Road Back
A few days after returning home Sylvia
and I were in our yard when our neighbor, Mack McKinney
came over to me. He greeted us and I replied: “You are
looking at a miracle here you know." He replied: “Yes, I
know." Indeed that was the summation of my story.
The transplant has made a life saving
difference in my life and that of my family and friends.
I am now able to lift my grandson to eye level and see
the sparkle in his eyes. I can mow the lawn, carry
firewood, plant a shrub, and go to work. When Sylvia
talks me into it, I can even help vacuum the house and
take out the trash. The transplant was the final defense
for a heart at war with itself. It was a war that
without a transplant I would have lost.
My survival was not luck; it was not an
accident. It was a miraculous gift from God. Parallels
between the gift of my donor and his family and that of
Christ’s gift of eternal life are compelling. My heart
was given unconditionally, with no strings attached, and
without compensation. It was free, yet came at a high
price. It required that a great loss be inflicted on the
Prior to the transplant, I claimed
Ezekiel 36:26 as MY verse:
“Moreover, I will give you
a new heart and put a new heart within you; and I will
remove the heart of stone from your flesh and give you a
heart of flesh."
I received my new heart on Easter
Sunday, 1991. It has changed everything. I have written
a book, Mr. NewHeart – Heart Attack to Transplant and
Beyond, which describes my transplant experience. It may
be purchased at www.lulu.com/dshollar and Toll Free
My story is a bit different than most, but I am happily here to tell about it. I had rarely been sick throughout my entire life. At one point I worked 23 years without missing a day of work. Then, on a Saturday morning in the spring of 2007 I was sitting in my den, at my desk downloading pictures from my camera that had been taken while on vacation the week before and the last thing I remember was seeing picture 45 load on to the PC ....... the next thing I remember was the black boots of the 3 paramedics in my den. My wife heard my collapse, called 9-1-1 and started CPR. I regained consciousness and was transported to the hospital, a heart cath showed 3 blockages and the doc said, "We'll fix those and have you out of here in 3 days"..... little did he know about the path I was about to take. A triple by-pass followed and things rapidly went down hill from there. My heart simply kept stopping ......... in a 2 week period I coded over 100 times. They tried many different drug therapies and even rechecked the surgery to make sure everything was correct. At one point, and it's one of very few things I remember, was that I was being transported to a larger facility to see if they could help. I was there about 5 days and the word "transplant" was mentioned to my family as my condition deteriorated daily. I was put on the donor list as an A-1, and I won the lottery that night ........ they found a heart that matched. It's a good heart and I'm trying to take very good care of it, every minute of every day. I thank God, my donor, my donor's family, the doctors and nurses and my family each and every day for the blessings bestowed upon me. If you like, you can read the longer version on my story on www.2ndHeartBeat.com.
The year was 1979 and my mom gave birth to her youngest child and that was me. Their beautiful (so they say) blue eyed blond little bundle of joy was born with a congenital heart defect, known in layman terms as a single ventricle. As a baby, I had my first catheter to determine if any surgical procedures would be necessary in the near future. They determined at the time that I can live a near to normal life for the time being as long as I was being monitored once a year. I would eventually need a simple routine surgery with a 97% success rate to correct the problem. Aside from being cyanotic, my childhood was pretty normal. I attended school and sleep away camp. I had a difficult time playing sports because I would get out short of breath thirty seconds into all my games. When anyone would ask as to why my lips were always blue, my response would be that’s, “ the style, get with the program!” Aside from sports I was usually the life of the party always having a good time.
I had one or two minor heart episodes consisting of heart palpitations in the first fifteen years of my life. My amazing doctor, who we loved and still love, recommended I go for the routine 97% success rate surgery. It was not a rush and there was no need to worry, but I would need it eventually so why not do it when I was young and healthy. Since she was retiring at the time, she recommended me to another doctor in a different hospital. She only wanted the best for her patients. After meeting my new doctor and surgeon and having my third catheter just three weeks after my second, I would be out of the hospital within ten days. I fell into the three percent category. Four months, three surgeries, a catheter, numerous intubations, a couple of chest tubes, my sixteeth birthday, thousands of prayers, hundreds of Intravenous, blood tests, and tears that could have flooded NYC,I walked out with a new heart.
I can literally write a book on my experience which I summed up in one run-on sentence above.
However, to give some encouragement to all of you waiting or who have had your transplants, I will tell you this: I could not wait to get back to school and start having a good time again. This happened! College was fun. I got married to the most beautiful and amazing person ever (I still wonder why she married me). My baby just turned two years old and is the cutest, funniest, most gorgeous little girl in the world!
(My brother still wants to know why it’s taking me so long to fall into the three percent category of people who win the lotto!)
Due to high cholesterol, a family history of heart problems, and 2 episodes ofl chest pain that took me to the ER, my Doctor told me that I needed to have a Cardiac Catherization. I worked in a hospital (as an MRI Technologist) so my insurance would only cover this procedure 100% if I had it done in the facility where I worked. I underwent this on 3/8/05, minutes into it the catheter was pushed through my left main artery causing a dissection of that artery. Due to this there was no blood flow to my heart. I had to be defibrillated twice (shocked with paddles) on the table, both times I was aware of the electricity going through me (terrifying to say the least). The hospital I was in was not capable of doing open-heart surgery which I required immediately, I had to be life-flighted to another facility. Due to the delay in getting me into surgery (over 4 hours) I had several heart attacks. The surgeon said to me every time she came in my room “You and I should not be having this conversation, you should not have survived this,God has kept you here for a reason” That statement has kept me going through all of this. There has been significant damage done to my heart. Specifically 36% of my left ventricle is scarred, I have an ejection fraction of 19% (normal is 50-65%)I have lost so much stamina and strength that just simple tasks can be overwhelming. A flight of stairs is like climbing Mt. Everest. I am weak, tired, nauseated, and have to lie down allot due to dizziness and the feeling that I'm going to pass out. I was admitted to The Cleveland Clinic on 5/11/05 and was found to be in severe cardiogenic shock, a life threatening condition. I had to have another Cath done which was an emotional nightmare for my family and myself again. The cardiologist placed 3 stents into my arteries. I was in ICU for 11 days, again, God kept me here. I have been told I will definitely need to have a heart transplant at some point but the longer they can keep my heart in me the better. They tried to keep me off the list by using medication. Unfortunately these meds did not work. July 05 I was found to be at high risk for “sudden cardiac death” which means my heart could just stop. I had a device called an ICD (defibrillator-pacemaker) inserted in my chest. Even if I could get myself strong enough to go back to work, I can no longer do the career of my choice because of the ICD. (This device cannot go in the magnetic field of the MRI machine).
On Oct 20, 2007 I was placed on the national transplant list. I have had 2 “dry-runs” I feel my life has been put on hold and everyone else’s lives keep going. I have never been a patient person so waiting is really difficult for me. But with God’s help I am making it through no mater how difficult. After all I do believe he has kept me here for a reason and I want to be able to make that reason come to pass!
In 1988 I found out I had a virus that
had attacked my heart and would eventually need a heart
transplant. After about 25 different weeklong stays in
the hospital to have fluid removed from my lungs, I then
spent 48 days in isolation until a heart was found.
Two years after my transplant, I wrote
to my donor family through the OPO and they accepted the
letter and responded, saying they would also like to
I contacted the OPO and they said that
it was left to the transplanting hospital. The Mass
General cardiac team said that it hadn't happened there
before, and they would most likely let us meet, but at a
neutral site and only after a team meeting. Well, the
night before they were to meet, I received a phone call
from Paul the owner of my health club, who said, “Jim I
think I have some info on your donor family." I had told
him about the letter, and now a woman who also worked
out there, was telling him about a letter from her 16
year-old son’s heart recipient.
From her description, he thought it
sounded like me. He asked what the parents’ names were?
I said they left the first names on the letter and the
mom’s name is not too common, it is Faith. He said,
"Jim, she is standing right next to me."
I went down and met her. The first
thing she asked was, can I hug you? And we hugged. I met
the whole family that night. (The health club is in my
town, but they live 3 towns away. I had been in Mass
General, their son had been in a hospital in Rhode
The next day, I called my team and
said, "You can forget the meeting today; I met my donor
family last night."
David, my donor, was 16 (he was hit by
a car) went to Culinary High School; I always do the
cooking in my house; he had a clubfoot; I have a
clubfoot. And the first time I was at their house, I
made a noise like the 3 stooges and his parents stopped
and looked at me and said, David loved the stooges and
always made that noise. Upon leaving their house, I came
to the end of their street and ran into Hart Square;
Hart is my wife’s maiden name.
Well now, David's only sibling Kristy
(who was 12 when David passed) is now getting married
and she wants me at her wedding in August 2003, she says
it would mean so much to her. She is also having her
reception in the hotel where the health club we’d met in
is located, because it has special meaning to her.
Miracles? I think so.
My dad died of dilated cardomyopathy at the age of 51; his brother died from the same disease in his middle 50's; his sister died from it at 33. In the spirit of fairness, my mom also died of heart related discease as did both her brothers ... the youngest at 38. Mention heart disease to my family and the whole clan leaps to attention.
I was diagnosed with cardiomyopathy at 48; I was experiencing bouts of ventricular tachycardia and a rapid loss of energy and stamina; I lost my balance and past out during a tackycardia episode and was taken to the hospital. After a series of tests, I received the diagnosis. It was terrifying. As a youngster, I grew up knowing that such a diagnosis was a death sentence.
I soon received a pacemaker and a defibrillator and was told that, sooner or later, I would need a heart transplant. Throughout the next few months, there were frequent hospital visits as the defibrillator would increasingly blast off! One horrifying episode, it shocked my heart six times in a twenty five minute span. Less than a week later I was placed on the National Donor List, and began the wait for a new heart.
June 3, 2005, I was re - admitted to UCSF and told I would remain until a heart was available. The lead transplant surgeon, Dr. Charles Hoopes, told me that the staff would do everything possible to keep me alive. For me, life on the donor list was a spiritual, emotional, and physical roller coaster ... in that order. You see, I have been a catholic priest for 17 years and I have visited hundreds and hundreds of people in hospital and always knew the right thing to say; car accidents, cancer victims, heart attacks ... I could always provide words of comfort and hope. But, now that I was the one on the 10th floor cardiac unit, I couldn't provide an answer for myself. It was the single most humbling experience of my life.
The truth is, I didn't know what to pray for - for me to live, obviously meant someone else had to die and I couldn't reconcile "prayer" for any such intention. I shared my frustration and fear with a trusted friend who said, "The doctors and staff are doing everything they can to keep your body alive and rested and strong, maybe we can help your spirit rest as well." I don't want to sound overdramatic, but it was something of a turning point - I mean from that moment on, prayer became less about "doing" and more about "being". I simply tried (not always successfully) to rest in God's love and the love of my family and community. I would lie or sit and just try and feel their love - all the people who came to visit, parishoners, students I had taught, even people I didn't know who sent cards with words of hope - they held me when I couldn't hold myself.
August 5th, 2005, I received the word: Dr Dana McGlothlin and Dr. Theresa DeMarco came into my room and said, "Joe, we think we have a heart", and the following morning at 4:00am, I received a second chance at life.
There are no words to describe what it is like to walk around with another person's heart in my body; "gratitude" and "humility" don't even begin to describe the emotions. In those final weeks before the tranplant, I promised God that if it was His will to allow it, and my donor's family would provide it, I would serve His people (faith denomination is simply not relevant) each and every day of my life in joyful thanksgiving for this gift of life - so, whenever possible, I return to the 10th floor and visit those who are waiting; I sit and listen and pray with them, and I share my story and ask that they, too, rest within the gentle, healing love of God, and the care and support of their family.
Now, back on the "other side" of the bed, I try and offer the same vision of faith and hope I received - I offer it as tribute to my God of healing, my family and community of love, and my donor of life.
My name is Joseph Lipovsky and my
transplant story begins in the spring of 2000, at the
age of 40, though at the time I did not know it. I was
driving back to my home in Peoria, IL after attending a
farm auction and had a period of heart racing. I did not
give this a great deal of thought because I attributed
it too a "low blood sugar" and a need for food. In my
manner of eating at the time I solved the problem by
picking up a pair of "whoppers". The discomfort subsided
and I gave it no more thought.
My hobbies involved woodworking,
gardening, and tearing down and rebuilding olds barns
among many things, and though living in town, we bought
an old "slaptrap" 6-acre farm-ette in the country. We
were busy renovating it and on August 12, 2000 I moved a
600 lb. block of sandstone with my 14-year-old son to
the property to be used for an entry sign.
That is as far as the block got because
on August 17, 2000 at 8:35 in the morning I call my wife
from work just to touch base. She being a registered
nurse, told me that my speech was slurred and told me to
put the secretary on the line. She had them call an
ambulance and had me taken to the hospital. I felt this
reaction was out of hand because I didn't think anything
was wrong, but I went along with it. I got to the
hospital very quickly and they checked me out. They
admitted me and did brain scans and checked my heart
function. What they found was that I had had a major
stroke. I had lost about one third of my left
hemisphere. My heart function was also compromised, I
had it turned out severe cardiomyopathy with an ejection
fraction of 12%. That evening the stroke evolved and I
was temporarily paralyzed on the right side. This
resolved with heparin while I was at the hospital.
One week later I was discharged and
sent home where I made great progress with speech,
occupational and physical therapies to recover from the
stroke. My family (4 brothers and a sister) made
separate journeys from their homes in Maryland and
Arizona to come and visit. My brother John asked me to
multiply 100 by 1.5 and I couldn't at the time. I went
through therapy and regained my right-sided use and
strength. Apparently being young helped a great deal and
I made what has been termed a full recovery from the
stroke. My recall for old events is still in place, the
only changes I note are that I dream very rarely now and
that I no longer get migraines (one of the few good
things). Over the month of September and October I
started going into work for a few hours a few days a
week, and attending rehab clinic. This did not last long
and my boss told me to stay home and work on
During this period I started learning
what heart failure was all about. I started retaining
water, and got to the point where all I could eat was an
egg-sized portion of food at a time. I started putting
on water weight (or actually losing weight but retaining
water). My kids started understanding the process when
we took them to a Mexican restaurant for my fourth
child's birthday on October 24th and I threw up the food
there. The store went out of business at the end of that
month and the kids blamed it's closing on me. I was
admitted to the hospital eleven days before
Thanksgiving. I had twenty-two pounds of fluid pulled
off me caused by heart failure and I was stable enough
to go home for Thanksgiving. I also had at the hospital
a defibrillator placed in my chest for my arrhythmia. My
new weight was 155 lbs (my college weight). Little did I
expect that I would get back to that weight - but the
route was not enjoyable. It was at this point in time
that the doctors started talking transplant to me, and I
started processing the concept. Thanksgiving was a nice
period and we had guests but within a few days after I
was feeling poorly again and putting on fluid. I was
going to the hospital three times a week for intravenous
therapy and getting fluid drawn off through the use of
I.V. cardiac medications.
December 7, 2000 was a bad day, I woke
up and developed a bad headache, which was not a typical
one. My wife took me in to the hospital and it was
determined that I was having a second stroke. This time
they told me I had a right occipital stroke They said
that this was caused by not being able to control my
blood thickness well after installation of the
defibrillator. That is how I remember it. I spent a week
in the hospital this time and was informed that this
stroke was not as bad as the first one. This one was on
the right side and caused a loss of peripheral vision
and caused some light feelings of paralysis on my left
side. I was in the hospital for about a week as they
tried to straighten my medications out. During this time
it became very clear that I was heading down the road
towards a transplant.
Mid December 2000 was a rough period. I
accepted the concept that to live I was going to need a
transplant. And through all of this my belief in God
never wavered. I just accepted the idea that what I was
going through was for a purpose I did not understand.
And that it was for God to know and not me. This helped
me through the process. I knew that I would not give up
without a fight, because we had four kids to rise and I
was not ready to "check out" of my own free will.
Christmas came and went with me paying what attention I
could to the process. I was now sleeping 20 hours a day
and not "with it" much for the other four. I could still
climb stairs but I was like a 90 year old in that I had
to go up one at a time and rest at each one.
Jan. 6, I had a scheduled angiogram and
measure of pulmonary arterial pressure. I was told that
it was a four-hour procedure and then I would go home. A
week later I went home. During the angiogram they found
that my pulmonary arterial pressure was now compromised
from the heart failure. Through medications during the
hospital stay they were able to get my pulmonary
arterial pressure back within the acceptable range and
thereby got me in a condition acceptable for a
transplant. I was told that they got me on the
transplant list on the Jan 11th. I was sent home after
having a central line installed and was given
intravenous meds to take this way. Having a wife who was
a trained as a nurse definitely helped.
Now the wait started, but it was not
long. With a weight of 150 lbs and having AB+ blood type
helped a lot. Three hearts were offered the first three
days, but they were turned down by the clinic. The
morning of January 25th brought a phone call that they
were flying a surgeon out to check a heart. At about two
o'clock the call came in to go to the hospital. They
then started prepping me and around 6:00 they let me say
bye to my wife and wheeled me in.
I received my heart from a 28-year-old
male out of Pennsylvania and I am grateful for the
chance at life that I was given. I have written to the
family but I have not heard back. I will try again but
give it some more time. I have not had dreams but I have
had a desire to do stone carving that I had not had
before – perhaps it is related.
I didn't wake up until the next
morning. My wife had waited up all night for me, but I
did not become conscious like they expected. The first
day was not good, the heart was only functioning at 30%
ejection fraction rather than the 60+% they were
expecting. That had me worried also the fact that I was
in acidosis. They were worried that I had thrown another
clot. I went back to surgery and they installed an
inflatable balloon pump in the aorta to control the
blood flow to the heart, because the heart was working
too hard. The acidosis it turned out was not caused by a
clot and slowly reversed itself. Normally they have the
transplant up the next day to walk. I remained intubated
for four days. I remember my wife telling me before the
transplant not to fight the tube and I didn't. All my
life I had done things for myself, but at this time I
was truly at the mercy of others. I just lay back and
let others do their job, and I said a lot of
I was in the hospital for two weeks
after the transplant. I did everything that they said. I
also ate like a horse and had a double portion for
breakfast, lunch and dinner. They got me on the
treadmill every day when I was there and I got up to 1.2
miles per hour. For a guy who used to be a runner, this
seemed pretty pathetic to me. I also got to walk up and
down the stairwell as well as doing walks on the floor.
Before being discharged they did another biopsy that
showed my ejection fraction at 35%. Winter in Illinois
is cold and there was a lot of snow outside with
temperatures at night running -10 degrees F at this
time. They sent me home where I was going to have to
learn to live again in a non-protected environment. I
had gotten used to the pampering treatment at the
For the first two weeks after the
transplant I was not allowed to lift anything heavier
than a gallon of milk. For the following two weeks I was
limited to lifting two gallons of milk at a time. For me
this seemed constraining because I wanted to clean the
garage and get my woodworking going. This ended up
waiting a couple of months. I was told to walk at least
10 minutes a day. I wore a path in the house from the
back bedroom to the entry foyer. It took 50 laps to do
the distance they wanted. One month after the transplant
I started an exercise program at the hospital, which I
found very helpful. I walked on treadmills and got up to
4.2 miles an hour and a 7% slope. After I finished the
program at the hospital the weather was warm enough to
start walking outside and I got up to walking 2 miles a
day. Medicine-wise I had to get used to consuming the
large pile of pills. I found this ironic because in
college I had the rule I would not date anyone who was
on a long-term medication (stupid, I know). Anyway I
felt that God got me for that one. I started at 90 mg of
prednisone a day and over time (a long time) got weaned
off it completely. I had a rejection episode at 2 mg of
prednisone a day and the doctors had to juggle my
medication to get me past that.
Now two years out - life has become
fairly normal again. I started back at my job part time
3 months after the transplant and reached full time
eight months after the transplant - it's a desk job. I
have only had two minor colds in that time span and take
preventive measures. I have found that my short-term
memory, which used to be almost legendary has faded
considerably. I attribute this to medicine I am taking
and have to get used to forgetting where I place my
keys, etc. That is my biggest nuisance. I am glad to
have my family and my wife and I love them dearly.
My wife Georjean has taken excellent
care of me and our family through this process. I am
eternally grateful and hope to make it up to her one
day. I am getting back up to speed but it is a different
speed than what I was used to (I can now only dig 8
thirty inch deep fencepost holes an hour instead of 12).
She makes sure we all eat correctly and has made sure
that our diet follows the guidelines. Our children
Stephen 15, Andrew 14, Kate 11 and Nicholas 9 have had
their own issues with this process. I cannot say it was
easy on any of them. Kate and Nick have handled it the
best, Stephen is the quiet type and Andrew is the
emotional one. For each they have had to work through
the situation and find their own form of
My name is Joshua Canal. I am a heart transplant recipient and here is my story that got me to here.
I was born with several heart defects. At 18 months i had surgery to correct a co-arctation or the aorta. They also found out that one of my ventricles wasn't developing and told my parents that the only cure was a transplant, but it was not needed at the time. I lived like this for 17 years, an almost typical healthy young boy. Of course my lips were blue and i got short of breath quickly but other than that no complications.
In the fall on '97 I began to have flu like symptoms that would not go away and i was put on a 24 hr holter moniter. The results showed that my heart could no longer handle the work load and now it was time for transplant. I went on the list early December and sat at home waiting. My condition began to go down hill to the point where i could not even walk a few feet without being severely out of breath. I was admitted to the hospital to keep a closer watch on me mid December. After a week or so they decided they wanted a central line. I refused for several days, but was finally convinced by my dad. While I was having the central line placed, I coded on the table and was out for 45m-1h they got back enough of a heart beat to put me on something called echmo. I was on echmo for 5 days.
January 24,1998 around 10pm my parents and the hospital got the call we had been waiting for. There was a heart. I was in surgery by 2am and everything went great.
I have had only 2 episodes of rejection, one in the first year and one about 3 months ago, Currently I work as a paramedic in a Level one trauma center ER here in Tyler, Tx.
So that’s my story. I will be 10 years on in 2 weeks and I can't wait I am going to spend the weekend with my donor mom who I got to meet when I was in the hospital recently.
Thanx for this website it is great inspiration!
My daughter Lizzie was born early, at 27 and a half weeks, she weighed 2 lbs 14 oz. She had a very rough time but finally I was able to bring her home.
I had a 1 year old at home so I would sometimes compare them at the different stages babies go through, she did really very well until she was about 2 then I noticed that she was so much more quiet than her sister as well as very pale, but then she was blond and her sister was dark haired. I became concerned with her progress more and more as time went by, she had no energy and when she did play she would sometimes fall asleep during her play. I of course had been taking her to her pediatrician and she said nothing was wrong and that I should stop comparing the kids. As time went by I became more and more concerned and started taking her to many different doctors, some of them even told me she was a lazy child. Deep in my heart I knew something was very very wrong so I didn’t give up taking her to different doctors. Then 1 week before her 5th birthday a small town doctor told me her may have heard something different in her heart beat and sent me to his colleague who was a pediatric cardiologist, this was to be the first of many echos, within 5 minutes of the start of the echo the room filled with a group of doctors. They came into the room after I got her dressed and a nurse took her to color a picture for me and the doctor told me that Lizzie was very sick and close to death, and the only way we could save her was a transplant as soon as possible. I remember feeling like I was in a wind tunnel and I could hardly hear her, I started to shake and cry, I felt very alone as her dad and I was divorced at the time and my family all lived a long distance from me. I took her home and within a week I was at the Mayo clinic in Rochester Minnesota going through the process to get listed for transplant. Lizzie got her new heart on April 12th 1999. After she had been in surgery for several hours the doctor came out and told me that the new heart wouldn’t beat on its own and they hooked her up to a heart lung machine. My knees buckled and I fell to the floor, I again pulled myself together and waited until the time I could see her, it took a long time due to the difficulties they were having with the heart.
When I saw her for the first time I was shocked… so many tubes and wires I was so scared for her, her lungs started to bleed and they talked about the fact that they were doing everything they could that it was all in Gods hands at this point. I prayed and prayed for my baby. After about 4 days they told me that she needed to come off the ECMO due to the fact it was beginning to damage her other organs, this was terrifying. I had asked the doctor what would happen if the heart still didn’t beat on its own and she told me that at that point there would be nothing they could do for her. After what seemed like hours the nurse came and told me that it was beating on its own!!!!
She stayed in the hospital a total of about 3 months and we spent another month at the Ronald McDonald house there in Rochester. During all this time I had my other daughter with me as much as possible and when I couldn’t she stayed with my mom.
Lizzie has done very well since her transplant with only 2 episodes of rejection, both of them minor.
She does have some learning disabilities and memory trouble so I home school her to help her avoid the torment of the other kids at school… we tried public schools and it was a disaster for her.
Today Lizzie loves animals and really wants to be a model, she also loves photography, her phone and the computer. She is full of life and a really joy to be around. I thank God every day for my girls.
My name is Micky Byrne, and I had my Heart Transplant on March 9th, 1999.
After many years of incredibly bad health, as a child of 13 I had Rheumatic Fever, then during my adult life until my heart transplant, I had undergone a triple By-pass in 1983, the removal of a Brain tumor in 1993, then a quadruple By-pass in 1996, which unfortunately went very Pear shaped. I actually had a Myocardial infarction (heart attack) on the operating table while the by-pass was being done.
This left me with a very damaged heart and I was assessed for transplantation at Harefield Hospital in West London. The assessment took five days, and every conceivable test was done to know if I really needed a heart transplant. I had to be sick enough to need a transplant, but strong enough to survive the operation. Every thing turned out as I had expected it to, and I was put onto the waiting list. After I was put on the transplant list, Carlton television asked me if I would allow filming of my Transplant, should a Donor come up for me whilst they were doing a Documentary of Prof Sir Magdi Yacoub the world renowned Heart transplant surgeon. As I am a real Ham, I agreed. The program was called The Life Saver, and was transmitted on March 22nd 2000.
On the night I got my "call" for transplant just three and a half months after being assessed, I had just demolished a couple of helpings of a curry I had made, and was just half way through Coronation Street (TV Program), when Pam Baldock (transplant coordinator) called me and said "Micky, what are you doing tonight? Fancy a new heart?" I asked how long I had to get there, and she said "A couple of hours" As my case was already packed after my assessment for transplant, it was no real rush to get ready. The next phone call was from the Carlton television team who were already parked outside my house. They knew I had a Donor several hours before me, and were ready to rush me to Harefield hospital. When I got there, the tests were done, The heart was good and arrived early, so it left no time for a pre-med. I was actually in the toilet (as one would expect), when I heard Dr Gavin Wright, the consultant Anesthetist calling out to me to get a "move on" as they had to get me pronto into the operating theatre. I'm glad I had brown trousers on!! I met the Prof just before they put me out, and to meet him for the 1st time, knowing he was the best in the world, It was to me, like meeting God.
The operation took seven hours, and I recollect so well that they put me to sleep at 11.45 PM.
When I awoke some thirty-six hours later (they kept me asleep for safety reasons), I remember one of the transplant coordinator's Tracey Jackson saying to me "Micky, you have the heart of a thirty nine year old man from Salisbury, and his family have just telephoned us to find out how you are doing". I then drifted back to sleep. As soon as I was moved from Intensive care unit to my own room, I was astounded at how quick the exercise program began, first with a pedal bike in the room, and then regular walks with Lorraine one of the Physiotherapist who started me on the "stair climbing" program. Within a couple of days I was able to do a double flight of stairs, compared to prior Transplant, when I found it hard to walk just a few yards, and even had difficulty in holding a conversation before getting out of breath. Such was the noticeable difference to me in getting a new heart.
Everything went fine, with the exception of some damage to my vocal chords, which does "occasionally" happen during transplantation because of the "breathing pipe" accidentally catching the vocal chords, and I was afraid it might have jeopardized my career as a singer musician. I was home in just seventeen days, and I thank God, that to date (over eight years), I have not experienced any rejection.
Within four months my voice had returned, I moved house two months later, and very soon after that, I resumed my career as a musician. I thank the Prof, all his team and the great staff at Harefield Hospital for giving me a new lease of life, and allowing my wife Julie to have some peace of mind after all the worries she has had over the years about my health.
About 20 months after my transplant, I received a large envelope from the transplant hospital, containing two letters. I knew that this was what I had been waiting for for some considerable time. They were letters from my Donor's family. One was from his wife and the other was from his parents. I learned so very much about the man whose heart was now keeping me alive. He was a computer systems analyst and his name was Jonathan. He played the violin and piano and golf was his main interest in sports. He was also involved in amateur dramatics and was in the process of writing a novel. There is too much about him to be put on this page, but I know that by just reading the letters that he was a good husband, son and father, and was being very deeply missed. I just thank the family as it was their joint decision to donate his organs after his tragic car accident, and in so doing have saved me and many others.
I hope you have found it interesting reading my story, and if any of you readers are awaiting a transplant, please go for it when the day arrives, there certainly is light at the end of the dark tunnel.
Hope you enjoyed my story.
Keep well, keep taking the pills.
Best wishes to you all.
In April 1989, Nick was born with Hypoplastic Left Heart Syndrome, a fancy name for a really messed up heart. He had a type of surgery called the Norwood Procedure at five days at Egleston Children's Hospital in Atlanta, Georgia. He then had a right pulmonary repair at three and half months old, which included a seven weeks stay on a respirator, because of a damaged diaphragm nerve. Nick went on to have another surgery to repair the left pulmonary just after his first birthday. A few months before he turned two it was decided that Nick could only survive if he had a heart transplant. After a six weeks wait, Nick received his new heart on March 21, 1991.
Before being transplanted Nick was a blue color, only having an eighty-five percent oxygen level. Immediately after the transplant Nick was a nice healthy pink color. The first year after transplant was difficult. We made many midnight trips to the hospital, but in time the trips decreased. Nick suffered mostly from sinus troubles and ear infections, nothing serious, just troublesome. Nick grew and started pre-school, even rode the bus to school his first day of kindergarten. He has learned to swim, snow ski, water ski, and has seen forty-eight of the fifty states and thirteen countries in Europe. He has been a member of Team Georgia at eight of the Transplant Olympic. He is a manager for his high school football team and plays tennis. He will be attending college next year and hopes to major in Sports Management.
Today, sixteen years and eighteen birthdays later, Nick is doing well. Heart transplants are not a fix, but a treatment, so we still worry about rejection and the future. But with all things said and done, it has been wonderful to see Nick grow up, which would not have been possible without the wondrous gift of a heart from Nick's donor family.
I have written a book about Nick experience called "Nick’s New Heart." The book is about how our family coped and is coping with Nick's illness. It will be in bookstores the summer of 2008. You can learn more about Nick on my website www.susanCmay.com
Proud mother of Nick May
"Nick's New Heart" in bookstores this summer
My name is Perry Kapano and I am a
heart transplant recipient. My story starts in July of
1998. I was at that time having a cholesterol problem
and saw a local doctor in my community. I went on
Lipitor and thought the problem was licked. About two
weeks later I started having chest pains. I went back to
the doctor only to be told I only had a pulled chest
muscle. I was given a painkiller and sent home.
I returned 5 days later complaining of
the same chest pain, and was given another drug. This
went on for about 10 visits until I was given an
in-clinic EKG. I was sent to the local hospital ER and
was hooked up there too. I was told I had a minor
imperfection but that it warranted no concern. They
tried to take blood and they couldn't get any. I was
released because another emergency was arriving and told
to take more pills.
A few days later I went back to my
local doctor and told him I have a serious problem. He
told me I wasn't a doctor and gave more pills to me
again. I went to the ER a second time and again was
I collapsed on my bathroom floor two
days later. I was rushed to another hospital and then
sent to another hospital because they had to perform
open-heart surgery right away. I got worse and was air
lifted to the U of M to be put on the transplant list. I
went on ECMO [Extra Corporeal Membrane Oxygenation] and
stayed on for a week. My wife was told if a heart didn't
come in soon they would have to take me off life
support. My wife was told I had a 2% survival rate.
I received a heart 4 days later. I then
took a stroke, had my kidneys shut down, and took a
major rejection all in the same week. I stayed in the
hospital for 5 weeks before I could go home.
As I write this it's been 4 years and I
have had little or no problems since. I had CMV but that
was treated and since then I have had no rejections. I
know my story is not typical of heart transplants
everywhere but it's my story nevertheless. The only
advice I can offer on this site is to believe in your
gut feelings and to listen to your own body. Don't
always take the advice of one doctor; always get a
Stay healthy and see you all around the
At Least It’s Not Cancer|
Remember way back to 1999, that’s when it all started. Couldn’t breathe and was continually coughing up the yuckiest looking stuff you ever saw (even made me sick). I really thought it was cancer because I had lost both parents to cancer. Well I got down on my knees and prayed to God to help me stop smoking. God does answer prayers. Please if you get nothing else out of all this please know that God does listen and does answer. I went in for tests: an X-ray and an ultra sound. Piece of cake, until they called Anna in and informed her I had severe CHF (Congestive Heart Failure) whew, what a relief. I thought I had cancer but it’s only my heart.
My EF (Ejection Fraction) was very low, only 15. (Normal is 55 to 65.) I certainly was transplant material. I had a couple of episodes Vtach so after my second episode of cardiac arrest they decided to put a pacemaker/defibrillator in me.
I must explain my feelings here about my reluctance to get a transplant. First of all I was tired of fighting, as a matter fact I was just plain tired. I was going to be sixty years old in 2004 and honestly didn’t think I deserved or was worthy of a new heart. I had lived my life and didn’t see much of a future. That was my position.
Doc’s are pretty good when they really care about you and Doctor Monroe will always be number one with me. While I was still in the hospital he called Anna at work and told her to talk some sense into me, there was nothing else they could do for me – I was going to die!
Anna and I talked. I thought about everyone I loved, and then I thought about my young son being raised alone by Anna or perhaps another man. After all she was still young and very pretty I am sure she would re-marry. The selfish part of Tom took over and decided I didn’t want that – I wanted my son to be raised by me.
I had an appointment with Doctor Aaronson at the University of Michigan to see if I was eligible to get on the heart transplant list. At this point I was in very bad shape and failing fast. Everything was set for the first week in October 2004.
My decline while in the hospital was pretty drastic. It was getting to the point my system was starting to shut down. The Doc’s came in and said "Tom you are in critical condition and we need to operate now." Before I knew it I was being wheeled off to have "AN OPERATION."
My first question: "What in God’s name happened to me?" My wife told me they had put an LVAD in me. A what? By January I was actually thinking I would be able to play a little golf in the spring. The LVAD was doing a great job.
January 25th 2005, 11:45PM the phone rings. Now you know nothing ever is good when getting a call that late at night, so it was with great trepidation that I picked up the call."Mr. Emahiser" the lady said, "This is the University of Michigan, I am Ms. Nurse person and I think you know what this call is all about." "I have great news, we have a heart for you!" she replied.
How do you say good-bye to your son who’s only seven and the love of your life? I tried to tell him how happy I was that Daddy was getting a new heart and at the same time not show him how afraid I was. I told him how much I loved him and that Mommy would see him later. He sort of acknowledged me – he was pretty sleepy. That’s okay little guy you sleep – please remember how much I love you.
At approximately 6:00PM the next day I took my first breath after being on the operating table for almost eleven hours. What a miracle – I was alive!! Thank you Lord! My second breath told me that I knew where I was and what was going on around me – what jubilation I felt – not only was I alive but I was lucid. I never was like this after my first operation. I knew the one thing that I must do no matter what, is to somehow try to tell his family just how much his gift meant. I was able to do that.
On the 25th of January 2005 Cory Cumberworth, 16 years young, met his untimely death on a country road in Michigan. Cory was an organ donor and gave seven people a new chance for life. I was one of those seven.
I am now 37, but my problems started at
age 19 when I was diagnosed with lupus. I had serious
ups and downs, many infections, aches and pains during
my 20s. But I also had two healthy children, a daughter,
Julia, who is 13, and a son, Coby, who is 9½.
My kidney disease began in 1997, not
long after a devastating fire that destroyed our home. I
started a 10-month regimen of IV cytoxan (chemo) to stop
the kidney damage. For a while it worked; then in 2001
the creatinine started to rise and protein showed up in
the urine. I was determined not to go on cytoxan
again as it had horrible side effects for me. I even
traveled from Texas to Phoenix (Mayo Clinic) to see if
there were any alternatives. They tried a newer
medication (CellCept) but my kidney function decreased
from 33% to 9% in a few months. I was very anemic, cold
all the time, and had no energy. In January 2002, we
knew it was dialysis and/or transplant. I still tried to
avoid dialysis and go straight to transplant. Once again
I called Mayo, who could evaluate me, and also my donor
brother, and do surgery in about 6 weeks. But it was not
meant to be. In March we went out to Phoenix expecting
to get the transplant, but instead received the
devastating new that because of my lupus activity, I
would have to go on dialysis for 3 months.
Dialysis was 3 times/week for four hours. It was the
most miserable time of my life. I felt like I was barely
holding on by a thin thread. I just didn't tolerate it
well, and was still freezing cold all the time.
We made it to June 2002 and discovered
that my brother (age 32) was a perfect, 6-antigen match!
What a blessing. Surgery was June 6, 2002 at Mayo Clinic
in Phoenix, and the big (14 cm) kidney began to
function well, but other problems developed. I kept
showing signs of infection: high white blood cell counts
in both blood and urine. Ultrasound and CT scans showed
the kidney working fine. I was in and out of the
hospital 4 times in the next 6 weeks. I was about to
give up hope. I spent 12 days on IV antibiotics,
suffered serious bouts of dehydration, and still the
white cell count remained elevated. Rejection remained
on everyone's mind as the doctors searched for the
answer. Finally a second surgery was performed on July
15, 2002. They immediately discovered that a 2" section
of the tube connecting my new kidney and the bladder had
failed. They were able to repair it quickly and from
then on it was smooth sailing.
My brother is my hero. He was so
willing to go through with the surgery to save my life,
and I will never be able to thank him enough. He
actually thanked me for letting him give me a
kidney, saying it was an awesome experience and a great
story for him to share with the teens at his church. I
no longer live on dialysis, with fluid and food
restrictions, and with a constant chill. The anemia is
gone, I have more energy and my kidney function tests
are perfect now.
After being off work for over a year, I
am now back at work part-time at the local newspaper
office. It is barely 4 months since transplant, and I
want to make sure I am fully recovered before going
full-time. My career dream has been to work in the media
business, particularly for a newspaper. Hopefully this
job will lead to a permanent, full-time job down the
I feel so blessed to have such loving,
giving, and supportive family and friends. They picked
me up from dialysis and cheered me up when I was down,
which was sometimes rather often! They brought us meals,
cleaned our house, and prayed unceasingly for us. In the
end, the challenge was worth it because the benefits of
having a new kidney far outweigh the struggle to get
On Thursday I will accompany my daughter to the obstetrician to see the first glimpse of my first grandchild in an ultrasound. I am as excited as I can possibly be! A new life, a part of my beautiful daughter, a baby for us all to love!
If not for a wonderful, kind, generous, unselfish man named Jon and his loving family, I would not be here to share these wonderful moments with my family. Without Jon, I would not have seen my oldest son graduate from OSU. I would not have been there at Christmas as my daughter and my youngest son both became engaged to be married, to cry and hug the girls and congratulate the guys. I wouldn’t be here to do the volunteer work that I do, or serve as President of the Zanesville school board. The little milestones and every day experiences that most of us take for granted, I thank Jon for every night as I go to sleep!
Jon died March 10, 1996 in Baton Rouge Louisiana of a stroke. I received his kidney March 11, 1996 in Pittsburgh. Jon donated his entire body to organ and tissue donation. His heart, kidneys, lungs, liver, pancreas, corneas, blood, veins and some skin and bones were used to bring life and hope to others. Jon’s family recognized that this was his wish and they allowed his wish to come true. Jon was a real man, a husband, a Dad of 2 sons, a provider, and a wonderful guy! And an organ donor by choice.
You can read the facts and the statistics anywhere. Look at me. I am real proof that organ donation works! It is a blessing. “Share life" is not just a slogan or a cute little caption on paper. It is a truth. When you die, you can share life with others. You can give the gift that truly keeps on giving. Sign a donor card today!
My transplant match was a miracle. Doctors say the match I received was like hitting the lottery. My kidney failure seemed to happen overnight. It didn’t, but one kidney takes up the work of the other as it fails, so it appears as if the illness is sudden. The theory is that I had a hidden virus in my system that silently attacked my kidneys. I had shortness of breath which turned out to be congestive heart failure. I was fortunate to have a wonderful caring specialist who worked with me and helped me feel well long after most would have been on dialysis. I never had to, and my creatinine was 12 at times!
On March 10, 1996 I got the call. A family had lost their loved one and he had pledged to donate his organs. We were a 6 point match, the best possible. My transplant was a success. It has been almost 9 years. I feel like a guardian angel made the match. Let me explain!.....
I wrote a letter to my donor’s family as I waited to leave for the surgery. The transplant coordinator sent it on to their coordinator and they got it. I received an answer almost a year later. Angie, Jon’s wife told me about Jon and their family, but the rules are that you should stay anonymous for a long period. Suffice it to say Angie and I found a way around that, as both of us were comfortable with knowing more. We e-mailed about our lives and sent pictures. She felt so proud to have helped me and I love her so for honoring Jon’s wishes.
The story gets strange here. My uncle Walt was from Louisiana, Baton Rouge to be exact. His best friend, Bill, is a plant manager at Kaiser Aluminum there. My Jon was an employee at Kaiser! I was curious to know if Bill knew of Jon and asked Uncle Walt to ask. Meanwhile, some of Jon’s friends at work were talking too. They had said things to Angie about Bill’s buddy Walt’s niece getting a transplant from LA the same weekend Jon donated. When we all put 2 and 2 together, you bet the answer was 4, yes. Jon worked for Bill at Kaiser. Stranger still, when Uncle Walt asked Bill if he knew Jon, Bill said, “Walt, I know him and you do too. He went to the fishing cabin with us for a weekend a few years ago. You fished with him!" Uncle Walt couldn’t speak. It does give you chills, doesn’t it? A random match on a nationwide computer puts us together and we are a perfect match. He fished with my uncle 1200 miles away!
Angie and I have met now for real. We went to Pensacola Beach and got to know each other. I consider her a friend.
Please encourage everyone you know to be a donor. Sign the card today! Share your life! Allow a Mom to help pick out her daughter’s wedding dress, or see her son reach his goals, or a Dad to play ball with his boys and walk his daughter down the aisle. Share Life! Donate!
The story continues...
I wrote this three years ago. I have shared many wonderful things with my family since then; the birth of my granddaughter, Kassidy, the weddings of my son and daughter to their loves, seeing my other son fall in love. All this made possible by a kidney donor. An angel.
Now, though, my donated kidney is wearing out. I am a dialysis patient now. It is a wonderful thing itself, but not the way I want to live the rest of my life! I have had a taste of how wonderful transplantation can be. Twelve wonderful years were a gift from an angel. My wonderful middle son is a match for me! We have gone through extensive testing are a “go" on a new transplant. We are on the surgery schedule at The Ohio State University Medical Center for 7:00 a.m. May 6, 13 days from today! Spring is the season of new beginnings for life, for the earth and it’s creatures and for all of nature’s wonders! New birds, bugs, green everywhere! And a new beginning for me, because of science and a miracle from my son, Billy. His love for his Mom has made this possible. His brother and sister would gladly have given as well, but were not medically able. Because of sensitivity to others blood from transplantation and transfusion, it is more difficult for me. The other two children and my husband are unable to donate to me. Several fabulously generous friends have also been ruled out. My son will give me my miracle. You could make the difference for someone else. Please be an organ donor. It can make the life of someone on the list as joyful as mine has been. It can mean the world to a family, a grandchild with a grandparent or a parent, a spouse, a friend. Whether by living donation of a kidney, a liver lobe or bone marrow, or by signing that donor card and letting your family know your wishes, share life. You can’t take ‘em with you, so share them with someone who needs your gift of life!
Beck and Dad - August 23, 2007
My 28 year old daughter, Beck, found out that her kidneys were failing due to diabetes on Friday, August 25, 2006. Two days shy of a year later, on Thursday, August 23, 3007, she received the right kidney of her 55 year old Dad (Frank). Now, 5 1/2 months post tx, both are doing great! Beck has two wonderful young sons and a loving husband... and life seems back to "normal."
First reports were that the kidneys were functioning at 22%, then within a week, clearer labs clarified a 17% function. The doctor told Beck the best bet was a kidney/pancreas transplant. We spent the next several months WAITING for insurance approval of visits, lived with canceled appointments due to waiting for insurance approval... and the eventual evaluation appointment at UCSF in late January 2007. At this appointment, the suggested course would be to find a living donor for the kidney and remain on the list for the pancreas. The reasoning... to avoid dialysis and the toll it takes on the body.
We were quick to discover that only Beck's hubby and Dad matched in the blood-type category. Mom and two sisters were type B while Dad and Beck, type O. Hubby was ruled out due to blood pressure concerns (no doubt worrying about his wife). Dad needed to lose 45 lbs to be considered for the surgery. He had to meet the 34% or less BMI (body mass index) requirement. Frustrating to us all, we'd lost valuable "dieting" time, not knowing that a living donor was an option. Dad began his quest to be the donor. The thorough (head to toe) testing concluded that Dad was a GREAT match... with a few glitches along the way. His protein levels went up due to a high protein diet. He got the "sorry you are out" letter until he could prove with further labs that it was the diet that caused the protein lab increase and not his kidneys.
In January 2007, Beck had surgery to have a fistual created for dialysis. Dad wouldn't be ready in time... and Beck would start hemo-dialysis in May 2007. With two young boys at home, she opted for this over the PD. She would tell you that it was hell... not the treatments itself but the treatment of the clinic workers, the lack of compassion, etc. The stories she can tell from that experience... would make ones ears perk up. I'll always remember her counting down those last few treatments before surgery. It is the luck of the draw... many centers are excellent, just not hers.
Donors are screened and checked every-which way possible! Transplant teams truly have the donor's health first and foremost above all else. The surgery was finally scheduled and the big day arrived. They were scheduled for early afternoon surgeries but the hospital wanted us there by 8 AM. It was a long time in waiting rooms that morning. Dad says he wasn't really nervous until being wheeled into the operating room, wondering what he'd gotten into. (Note, he'd never been in the hospital since the day he was born. No broken bones or stitches for him.) Having served as a medic in the Air Force he knew the miracles of medicine. He also knew he was saving his daughter's life.
The surgeries went as scheduled lasting just about the amount of time they said they would. The sweetest words you can hear after the recipient's surgery is that the kidney worked and they are peeing. This was the case for Beck... and I was grateful! The longest time was waiting for Beck and Dad to be moved from recovery to the transplant floor... but we'd been warned that could take time. Both looked tired and sore. Dad felt pretty sore the next two days... thinking he'd feel like that for a month. Then on day 3, after a shower, he felt 95% better. Hospital beds don't really allow you to rest like your own bed at home. Dad was released on Sunday and took one Vicoidin that first night.
Beck looked amazing the next morning! She could see the difference and color coming back to her skin. Her bladder got lazy so she was sent home on Monday with the catheter. Her 5 year old loved telling people that, "Mom had her pee on her leg (in a bag)." On the next visit to the clinic the catheter was removed and all was well. Regular labs and visits to the clinic are now life's routine. Beck lives in the valley about 2 hours away from San Francisco. Her clinic visits often include overnight visits with us.
What is next? Well, after 6 months of healing Beck will be reactivated on the pancreas list this March. She has not lost any time and her original wait was 1 to 1 1/2 years. The one year mark is this February 13th. Beck has planned a Valentine's get-away cruise before the next surgery. Beck was diagnosed with Type 1 diabetes at age 10. The thought of no insulin, no shots, and less worry is amazing. Of course there will always be the anti-rejection meds and labs.... but a small price for a precious, healthy life!
hugs and love, beck’s mom (Kathy)
May 20, 2008 will be 5 years for me and my sister. We had our kidney transplants together -- no we did not plan it, but the call came at the right time. I was on dialysis for 2 years when I fell very sick, it was at the moment where I was saying I’m never getting a call for a kidney. Then 2 weeks later the social worker called to say they had a perfect match. My sister had a kidney transplant and just found out that her kidney was failing, my social worker told me that we were getting the kidneys together. I called my sister and she thought it was a joke, but when her social worker called her, she started packing. We had the transplants at New York Presbyterian Hospital. We are both doing well.
My name is Darlene, I am 31 years and had a kidney transplant in 1999. My older brother donated his kidney to me. We are both doing very well. Since my transplant, I have been an office manager for a non-profit organization and now I have gone back to college, started my own business and living life like I should have the first time around (pre-transplant). My kidney failure was a result of a Neurogenic bladder that I had since the age of 1.
I created a short video about my transplant, more so honoring my brother. You can view it here.
I also volunteer for a local organ procurement agency. I attend health fairs and talk to people about organ donation and meet a lot of great people (including other transplant recipients).
Dave and Lil
Our Transplant Story
On a Friday the 13th in the fall of
1996, we were handed a harsh diagnosis. My loving wife,
Lil Luallin, was diagnosed with End Stage Renal Disease.
We were told that in her immediate future would be
dialysis or a kidney transplant or both. Lil had thought
that maybe she was getting an ulcer but the truth was
that she had lost 100% of her kidney function before we
knew anything was wrong and that both kidneys were
involved. Talk about a shock. And as a nurse who had
taken care of dialysis patients, Lil wanted no part of
it. If it is possible to have too much knowledge about a
subject, Lil knew only too well about the problems that
dialysis patients face.
Fortunately, the use of high doses of
steroids as well as other drugs was able to buy us some
time and to postpone dialysis for a while. It was at
this time that we decided to pursue a transplant. We
still had children in school, and at our mid-forties at
that time, we still felt that Lil and I were young
enough to have a lot of productive years ahead of us if
we could just get her well.
Our first thought was to have a living
donor give her a kidney. This was something I would have
dearly loved to give to her and would have willingly
done it in a heartbeat. However, since I had had a heart
attack earlier in 1996, they wouldn’t even consider me,
wouldn’t even draw blood to see if I would match. Next
was possibly a one of Lil’s siblings since a sibling
would have the best chance for a match. However out of
Lil’s five siblings only one felt called to offer, Lil’s
sister Joyce, and she tested positive for Hepatitis C,
so that ruled her out. So the only option then was to
get listed for a cadaveric transplant, meaning to wait
for someone’s family to donate organs after a death.
So we began the process of getting
tested and listed for a cadaveric transplant, both here
locally at Iowa Methodist and at Mayo Clinic in
Rochester, MN. This proved to be a long drawn out
process that involved countless and various tests and
procedures but in September 1997 we were listed at Iowa
Methodist and in December 1997 at Mayo and the wait
As 1998 entered, Lil’s health was
slowly going downhill at an increasing rate. She was
very anemic and was constantly cold. She was also losing
strength and energy but was still working full time.
However, when she would get home in the evening, she was
totally spent. And in early February our nephrologist
told us that dialysis could be put off no longer, that
she needed to start immediately. This was a very tough
and emotional time for us and especially for Lil who had
been fighting so hard to avoid it. But, our choices were
pretty slim so it was off to dialysis we went.
Lil had been on dialysis two weeks when
we got the call we had been waiting for. After only five
months on the waiting list, a kidney had become
available. Lil had originally been second in line for
this particular kidney, but for some reason the person
who had been first wasn’t able to take it. We never did
find out why. So late the night of February 21-early
morning the 22nd, Lil was taken to surgery to receive a
Now, I had known that someone would die
if Lil was to have a kidney, but it was always kind of
far off and distant and kind of abstract. But now that
it was actually here, reality reared it’s head and
smacked me in the face. You see, our two youngest
daughters, ages 15 and 17 were with me in the waiting
room when we were told that the donor was a 15-year-old
girl who had been killed in a traffic accident. And I
knew that while we were looking at a new life for Lil
and a new beginning, that somewhere there was a family
gathered for something quite different. I couldn’t help
but think, “What if it had been one of my kids?" and I
hurt so much for this family. To think that at such a
tragic time for them that they had given to others. It
was at this time that I made inquiries about how to go
about writing a thank you letter to our donor
Lil’s surgery went well. The kidney had
been on ice for over 15 hours and went through a period
of shock before it started to work like it should. Lil
hit a few speed bumps in her recovery but went home 24
days later on March 18, 1998.
In April when I was pretty sure in my
own mind that things were going well, I finally sat down
and started a letter to our donor family. I really felt
a driving need, an urge, a calling that this was
something that I had to do. Not that Lil wasn’t
grateful, she certainly was, but she just was in no way
emotionally ready to even think about it yet. It had to
be the hardest letter I have ever written in my life.
What do you say to them and how do you say it? I must
have started on it 50 times and 50 times I tore it up. I
finally just tried to tell them about us and our family
and Lil’s illness and how much their precious gift meant
to us and had impacted our lives. I also told them that
I didn’t know if they would ever want to meet us or
contact us but that we would honor their wishes either
We got a letter back from them in June
1998. We learned that Lil’s donor’s name was Holy Lea
Nelson and that she was 15 and from Pierce, Nebraska.
Holly had been in a car/semi accident just outside Sioux
City and had died in Sioux City after seven days in ICU.
We learned that Holly was a gifted athlete, active in
track, cross-country, softball, basketball, and
volleyball. We learned that she was active in Fellowship
of Christian Athletes and had recently accepted Jesus as
her Savior at an altar call at an FCA event. We learned
that Holly had a premonition of her death and had asked
her Mom that if anything ever happened to her, that she
wanted to be an organ donor so someone could live in her
place if she couldn’t live.
We then corresponded with Holly’s
family by letter, e-mail, and phone until February 1999
when we decided it was time that we met. So the last
weekend in February, one year and one week after Holly’s
death and Lil’s transplant, we traveled to Norfolk,
Nebraska and met Holly’s family. Emotional? Off the
scale. We shared tears, we shared laughter, we shared
stories, we shared an indescribable bond and love. We
were able to meet many of Holly’s friends, visit her
hometown of Pierce, NE. To pray at and place flowers at
her grave and touch her headstone. We will never be able
to give her a hug on this earthly plane of existence so
that was as close as we could come. And on Sunday our
family and Holly’s attended their church together and
worshipped and prayed together. I don’t know that I have
the words to tell you what a spiritual experience that
was to be there with them. It was a beautiful morning
with the sun streaming through the stain glass windows
and we experienced a feeling of extreme peace and
comfort that could only have been God holding us all in
We continue to stay in contact with
Holly’s family. They are such wonderful loving people
and we have so much love for them. We can never thank
them or Holly enough for what was given to us so we just
try to live a good life and to share Holly legacy with
others. We speak to Driver’s Ed. classes, health
classes, church and civic groups, health fairs, and our
active in our local transplant support group and
As I close this, there are a few other
things I’d like to share with you. The first is
something that Holly’s Mom, LeAnn, asked me on the phone
once. She said, “Do you ever think of Holly?" Only
everyday, LeAnn, she is always with us. Lil and I have
been so blessed. We’ve seen all of our kids graduate
from high school, go to proms and homecomings, have had
three of them get married, and have a wonderful
grandson. I think of Holly’s family who got to pick out
a cemetery plot, and a casket, and a headstone. I think
about a young lady who wanted others to live in her
place and know that Lil does with one of her kidneys, a
man named Rich also has one of her kidneys, and a man
named Norm has her heart and that all of them live in
her place. I think of what a wonderful loving legacy we
have been given and that each of us are also capable of
leaving the same legacy to others.
A large part of Christ’s ministry and
of the Apostles was of healing and curing. Letting the
blind see and the lame walk and even bringing people
back from the dead. We have within us the same power, we
have only to choose to use it. To heal and to cure and
to bring back from the very edge of death.
I’d like to close with a few
Matthew 10:8 Heal the
sick,....freely ye have received, freely
Luke 6:37-38 Give and it shall be
given unto you.
John 10:10 Give life
that others may live more abundantly.
15:12-13 Greater love has no
Please, discuss this with your family.
Put it on your drivers license as well as carry a donor
card and go online to Iowa Donor
Registry and register there as
My Kidney Transplant Experience
It was Feb 2004 on a routine drs appt that I found out something was wrong with my kidneys because I had protein is my urine. I was sent to a nephrologist who did an ultrasound and found out that my left kidney either never formed or died when I was young. To this day I have no idea what kidney disease I have as they did not want to biopsy the one surviving kidney for fear of making it worse. They said there is no cure for any of the diseases anyway.
In March of 2004 I was told that my kidney function was at 44%. By September of that same year my function was down to 22% and the doctor said it was time to be thinking of dialysis or a transplant. I had a fistula put in Nov of that same year and filled out the paperwork for the transplant and sent them in. It was a long wait for the eval, I didn’t get called until Feb and not put through the evaluation until March.
Once I was in the evaluation process I was able to have people tested. I was BLESSED to have so many people step forward to be tested. I had 8 family members and friends tested and they were not a match. I started looking toward dialysis, as my creatinine was rising. They told me that when my creatinine reached 6 that I would need to start dialysis, it was at 5 at that time. I was talking to my youngest son’s girlfriend’s mom (I know that’s a mouthful) and she was asking me how it was going. I told her that at the time that so far we hadn’t had a match. She asked me what a person needed to do to and I told her, she took the number down and then we talked about other things.
I had no idea at the time , but my poor hubby was fairing pretty badly. He tells me now that he used to roll over in the middle of the night to make sure I was still warm. On May 21, 2005 I got the call that I was officially being placed on the list. No matter how prepared you think you are for these things, it still hits you hard. I called the hubby to tell him and we settled in for the wait. At 3:00 that same day Charlotte, my donor called, and said she had received a call saying she was a MATCH…3/6, the same as a sibling. I told her immediately that she didn’t have to do it, it was such a huge decision to make for just a friend. She said she was doing it, she had talked to her husband and daughter and they were all okay with it.
Charlotte went through all of the testing and then was told she had to lose 20 pounds and should quit smoking. The smoking part was actually easy for her she quit pretty easy. She lost the weight and in Sept she called to say when are we going to do this? They put her off for another month, we both think they were giving her time to back out. Our date was finally set for Nov 14, 2005. We both get to the hospital at around the same time (7 AM ). Her family was there and my family was there all for support. They take her off to pre op and we sat waiting. About an hour later they call me into an office and then proceed to tell me that the operation was called off because she had a uti. When she came to meet us she was devastated, kept apologizing over and over. I told her no big deal, these things happen. She said they literally had her IV in and were getting ready to put her to sleep. We had lunch and she swiftly went home and called them to reschedule as soon as possible…..Dec. 7.
Dec 7th we all show up again, same time, same place. I knew today it was a tough one, if there was any setback I would have to start dialysis as my creatinine had hit 6.1 This time I went to pre op with her and left when they were getting ready to put her to sleep. I went back to wait with the family and we waited about another 2 hours before they finally came to get me. I got a little scared as the same women came and called me aside but only to put a smiley face on my stomach to mark where my surgery was going to be. They called me to Pre-op and the next thing I remember is them taking me to ICU. The doctors told the family that the kidney started working the minute they attached it. All the family came in and gave me a kiss and hug and then they left….By now it was somewhere around 7:30 at night, a very long day.
The funniest thing I can say about being in the ICU is the nurse waking me up to ask me if I was using my morphine pump….I told them no I was sleeping. They then told me I needed to make sure that I was using it so I would stay on top of the pain. I figure I must have a really high pain threshold because I don’t ever think I was ever in “excruciating" pain. The worst part for me was a fever that I had for about 3 days, which left me without an appetite. I spent less than 24 hours in ICU and then they sent me off to a regular room. I was about 3 rooms down from my donor and later that evening she came walking down to see me. From then on we took turns visiting each other. I feel bad to this day because she was in so much more pain than me. I made sure that any of my visitors went down to visit her also. I don’t know if she liked that or not but oh well! I went home on Dec 12th to recover. My hubby and mother were so supportive. Mom took care of me during the day and the hubby did at night. I returned to work at 6 weeks.
I am now 2 years out of my transplant, and life is good! I work part time and spend as much time with my family as I can!!! I am now down to taking 3 pills a day to keep the rejection away. My husband and I just celebrated our 25th wedding anniversary and renewed our wedding vows. I have 3 children and right before getting my transplant found out I was going to have my first grandchild, he is now 16 months old. I have been blessed to be rejection free at this point and hope to continue for years to come. I celebrate every anniversary spending the day with Charlotte, my donor. Her daughter and my son actually ended their relationship before the transplant but are friends. . I consider her my sister, we talk often, and I now find that we are a lot alike. We always say we were sisters separated at birth and even if we weren’t, we are sisters now .
Adjusting to new realities—it’s a
continuing theme of my life while dealing with End Stage
Renal Disease (ESRD). But it wasn't that way before June
1986 when my life was just wonderful.
I had just married my wife Clare and
instantly became a father to her two teenagers—Rochelle
who is 16-years-old, and Hunter who is 14-years-old. My
life was running smoothly and I was about to start a new
career in the mental health field.
In 1990, I began working for a new
hospital in South Florida helping children and
adolescents with mental and emotional problems. It was a
great job! I was 38-years-old and doing something that I
Everything was just perfect until I
received the devastating results of a blood test. While
I knew I had high blood pressure and tests had showed a
high BUN and high protein levels in my urine, I still
felt great. However, my wife and I learned that within 6
months I would either need a transplant or have to start
Within three months, I lost my job. The
self-insured hospital were I worked laid me off because
they believed my medical condition was pre-existing and
refused to pay the growing stack of medical bills.
Things really took a downward spiral when my wife lost
her job as well.
We were trying to adjust to our new
reality as we searched for any kind of financial
assistance. But everything was about to change.
We were at a church service on a Sunday
in October 1990 when a stranger approached us. He
offered to give us a place to live, plus a reliable
income. We would become the managers of an eight-unit
townhouse apartment complex and we would be given all
of the rental income that these town homes produced.
This kind stranger also gave us $1500 in cash to help us
move in. It was just like the Gospel when Jesus tells a
story of the man who gave help and lodging to another
stranger in need.
In the meantime, I was placed on the
transplant list. In order to avoid dialysis, my doctor
continued to adjust my medication. Then on July 21,
1991—just 70 days after I was added to the list—I
received a call from the transplant center. The next day
I received a transplant and was able to leave the
hospital in just 10 days.
I can still remember that first day
home, looking at all those medications. I was told that
the operation and anti-rejection medications could lead
to some serious problems—it was rather disheartening.
But I still had faith that the transplant would solve
all of my problems and that everything would work out
great! However, I was to soon find out the truth—a
transplant isn't a cure, but only one type of
Over the following weeks each blood
test led to more changes in the medications and an
occasional stay in the hospital for a biopsy of the
transplant or treatments with OKT3 to stop rejections.
Finally, three months after my transplant, I was
admitted to the hospital for the sixth time. I spent the
next 21 days in ICU where I didn't know the difference
between night and day. Clare was devastated when the
doctors told her that I had cancer and only had a few
days to live.
My wife and I were forced to quickly
adjust to a new reality. But there were also problems
with our property. The court ruled that the apartments
were assets of the bank and ordered all of the rental
income to be held in a trust. We had to move out of our
apartment and, we lost all of our income.
But there was some good news. Although
nobody expected me to live, I recovered. The transplant
was removed and I had to accept hemodialysis as part of
my new reality. It was extremely difficult because I
felt sick most of the time. Finally one day our social
worker told me about peritoneal dialysis. This was
appealing from the beginning since it could be done at
home. I tried both CAPD and CCPD and eventually chose to
stick with CCPD. I finally began to feel more in control
of my life. I even had a chance to vacation.
In late 1991, Clare and I loaded our
trusty CCPD machine into our faithful 1986 Astro van and
took a seven-week trip visiting family and friends
throughout the Eastern USA. At night, we used the CCPD
machine, and during the day, I did exchanges by hand
while Clare drove on the turnpike. What a trip!
When we returned, my kidney conditioned
worsened and I went back on hemodialysis. In the months
to follow, I battled chronic hypertension, pancreas
infections, 10 operations, trips to the emergency room,
and several extended hospital stays. In April 1994, I
had to be transported to Shands Hospital in Gainesville,
Florida for emergency surgery. I remained in the
hospital for four months, while I was fed through a
tube. Clare rented a room in a nearby home in Maitland
to be near me.
In January 1997 I had to go through yet
another surgery at Florida Hospital in Orlando to have
my natural kidneys and spleen removed. This time a
morphine overdose caused my overnight stay to last 19
days as my doctors worried whether or not I would regain
When I recovered, Clare and I were
trained to do hemodialysis at home. It was the first
time in 10 years that someone in Central Florida was
shown how to set up their own machine, insert their
fistula needles and monitor their own treatments. It is
only due to Clare's love, help and care that I even had
this opportunity of doing home hemodialysis for almost
six months safely at home. But we were soon to discover
that hemodialysis is both a dangerous and difficult
procedure. Due to complications, I had to stop home
hemodialysis and return to the BMA Center for my
treatments. But this time, I went to the dialysis unit
as an educated patient. I believe that I received better
care due to the self-training I received. I learned so
much that I was able to apply to my treatments. I'm
convinced that the education also helped to increase the
quality of my life and my long-term health.
I was content and finally learning to
accept my reality when I received yet another call for a
transplant. On Dec 6, 2000 I received that transplant
and this time, it was a success.
My wife and I continue adjusting to the
realities of life. Fortunately, things are now looking
up. I recently began working again with the support of a
vocational rehabilitation program.
What I would like now is to get paid
while working on my laptop and live anew as we both
continue to walk in faith and accept whatever happens,
Just learning to adjust to new realities, which is
our daily prayer, so not to allow renal failure or
anything else to stop us!
My name is Gabriela. I was born in La Plata, Argentina. I'm 36 years old right now. My kidneys failed when I was 9 months old. I had Hemolytic Uremic Syndrome - now days seems it was provoked by T. Collins (My now almost 3.5 year old niece had something similar at the end of last year that could affect her heart. Fortunately today we know for sure whatever she had didn't affect her heart.) I had to be in the hospital for 3 months. I forgot the details but I lived through it by a miracle. My kidneys began to work. I grew normally till pre-kindergarten. When I was in Kindergarten, the difference in the size of other children my age was very noticeable.
By 1978/79 something had to happen for me to continue live. My mother told my doctors from La Plata (birth city) "If I have 2 kidneys, why can't I give one to my daughter?" The doctors just laughed at it. One day my doctor had a meeting with doctors from other cities. He talked about what was happening with me. A doctor from Buenos Aires (a city named after Argentina 's Capital) told my doctor to leave my case in his hands. On June 26th, 1979 my mother donated me her kidney. As it wasn't a very good match, (there were not good anti-rejection drugs, etc. then) the kidney began with acute rejection 4 months after the transplant, and lasted 2+ years till it had to be removed due to another big rejection.
From October 1, 1981 to October 30, 1987 I was in hemo, CAPD, CPD, Hemo again. We moved here on October 23, 1981 right after I had to begin dialysis. On October 30th, after almost 2 years in hemo-dialysis the kidney came. Even the doctors gave me no hope by insinuating I never could get a kidney due to almost 100% antibodies from so many mixed blood transfusions and the previous kidney transplant. The new kidney matched me with 4/6 antigens and seem to be made by my own body. I never ever had any acute rejection (aside from my mother's kidney). As I was 15.5 years old it didn't help me to grow, but it kept me out of hemo almost 15 years. We do believe my chronic rejection happened because the doctors didn't watch my Cyclosporine level closely enough in the blood.
On October 1, 2002 I had to go back on hemo-dialysis. I was awfully stressed and my only relief was the computer. One day, I received an email saying something about living donation. I went to the web but didn't really find anything, till one day I noticed LDO (Living Donors Online) had a "looking for" forum. After reading all the “looking for” posts, I felt I didn't deserve a third chance. I wasn't a mother. I didn't/don't work. I didn't feel I had a good reason to get another kidney. I wrote all I felt in the "Prayer forum" and a donor answered me very nicely. I began to leave messages on the "looking for" forum, since I dislike leaving messages where everybody could read. I began to email each potential donor. Many wanted to sell me his/her kidney or disappeared. After plenty of emails and a lot of time, I sent her an email. I had a young lady who was only 22 years old reply to me. Since she was only 22, I asked her why she wanted to donate. Her answer seemed good enough for me to try her as my potential donor.
She started by calling my coordinator at UCLA, who then told her we have to be blood related. My father had called UCLA before this and informed them that I was looking for a donor over the internet. I thought by calling UCLA ahead of time that everything was going to move forward and they would accept her as my possible donor. Contrary to what I was lead to believe, UCLA would not proceed or even find out if this young lady was a match for me. A search for other transplant hospitals began.
I was in Kaiser, so we tried Loma Linda (which is pretty far but could end up going to Kaiser for my follow ups). The coordinator seemed to play with my possible donor. The coordinator would call when my donor wasn't home, and she wasn’t in when my possible donor called her. I commented about it on LDO and was asked, if they act like that at the beginning, how would they be later on and suggested that I change hospitals. My father called other hospitals and it seemed as though St. Vincent was going to accept me. I had to wait to get out of Kaiser since Kaiser passed as my first insurance and they don't work like that.
In beginning of 2003, I went to see the surgeon at St. Vincent. When my father told him that UCLA wouldn't accept an internet donor, the surgeon asked my father who told him Kaiser would accept an internet donor? My father tried to explain to the surgeon who told him, but she denied saying so. The surgeon told us there were no hospitals that would accept anybody met over the internet to be my donor. Since I had like 60% of antibodies, I needed a living donor to donate for me. I was going to need a treatment that, at that time, couldn't have been done without having a living donor. Basically that surgeon was telling us that I could die before any hospital would perform a kidney transplant from an unrelated donor. It was too expensive for us to go to another state because 80% of everything would have to be paid by us.
My father didn't give up and he continued looking for another hospital in California. Finally the hospital search was going to end. He called Cedar Sinai which coincidently the Transplant Head was a fellow we met at UCLA when I was a child. Everybody was very nice. Everything was done pretty fast but we had to wait till my donor had a vacation. So, on June 5, 2007 (the same month as my first transplant and almost the 20th anniversary of my second kidney transplant) my third transplant was done at Cedars Sinai. They compare their hospital to John Hopkins. They did something that not many hospitals did at that time. They did a procedure called IVIG. It’s a treatment to lower my antibodies (a pretty new treatment much easier to handle than Plasmapheresis). My last appointment, the year before my last transplant, my Creatinine was 0.9. Since then it is 0.7. It could be said that 0.7 is my “normal range” since that’s what it was most of the time.
Thanks to all of you here. Without you, I wouldn't be able to concentrate as much. I want to thank my donor, Kathryn Gagnon who just became a nurse.
My name is Geri. I was born with TS
(Tuberous Sclerosis); this is a genetic disease that
doesn’t show up until adulthood. I also have Polycystic
Kidney Disease, which means I have cysts in the kidneys
that are not cancerous. I received my kidney transplant
on 1/30/97. My Creatinine level runs high, 3.2, and I
will need another kidney transplant when it reaches 3.4
or higher. I had a lot of rejection and medical problems
from the very beginning.
In my spare time I am on the computer
2-3 times a week and I also like to travel, read books,
and go to hockey games (I am a Red Wings fan.). I am
dating a gentlemen friend now; his name is Jim. I have
no kids, I am active, I like to try different things,
and I also like having pen pals. Now I have some e-mail
friends try and keep in touch. I strongly believe in
communicating with friends, family, etc. I want to get
out more often and meet other people going through the
same/similar situation. I am looking ahead to having an
active social life and hope someone out there feels the
same. I like to stay active, but I don’t exercise
enough; I love to talk on the phone when not on the
For those pre- and post-transplant
patients who need free materials, contact the Transplant
Learning Center at (888) 852-3683, or who want to
receive free Transplant Kits you may write to Fujisawa
Healthcare Inc. 1050 E. Business Center Dr. Mt.
Prospect, IL 60056-6052 For those who need to order
their meds by mail contact Amber Pharmacy at (888)
370-1274. For those of you that have Crohn's or Colitis
or both, contact the Crohn's and Colitis Foundation of
America at (800) 932-2423. If you wish to volunteer you
may contact Gift-Of-Life, (a Michigan Organ Procurement
Organization) at (800) 482-4881 or see Gift Of Life
Foundation 2203 Platt Rd. Ann Arbor, MI 48104 or see
You may call the National Kidney
Foundation at (800) 622-9010 they can also give you
information on support groups and toll free numbers to
your closest National Kidney Foundation, or you can ask
your Transplant Coordinator for a list of support groups
in your area or for a list of websites you can visit.
For those of you who have Tuberous Sclerosis (TS)
contact the Tuberous Sclerosis Alliance at (800)
I think some of the following material
would be very helpful to our readers. Please subscribe
to the following material, books, and brochures; some
are also have these available in Spanish.
- Transplant Chronicles is available through The National Kidney
Foundation; you can also get information about the
Transplant Games at 1-800-622-9010 or write to
National Kidney Foundation, 30 E. 33rd St., New York,
- Renal Network Of The Upper Midwest, Inc., 970
Raymond Ave. Suite 205, St. Paul, MN 55114 publishes
"Common Concerns". If you would like info for support
groups, or need info about donation, or volunteerism,
please call Jennifer at 1-800-482-4881, ext. 227
- For information about the National Waiting List
contact The United
Network for Organ Sharing (UNOS).
- Living Wills and Advance Directives are available
from state or county medical associations, hospitals,
and doctors offices or write to Partnership
For Caring, 1620 Eye Street NW, Rm. 202,
Washington, DC. 20006.
- Visit Transplant
Patient Partnering Program or call 1-800-893-1955.
You may register and receive booklets and newsletters
by mail. Some title include: "Transplant Times
Newsletter" or "Milestones." I downloaded the booklet
"LifeChoice" and watched video Lifestory
both of these are for kidney transplant recipients,
but they also have information for heart, liver, and
other transplant recipients. They can provide videos
and material in Spanish.
Geri's second transplant
I received a living-related kidney
transplant from my sister Michele. Some of you may be
aware of this and know just what I have been through to
get to this point.
My second living-related transplant
took place on 1/27/03 from the University of
Michigan—Ann Arbor. I was home only after being in the
hospital for five days, and in less then a week was up
and walking around the house. I always maintained a
positive attitude through the whole operation.
There is a saying that goes like this:
‘a second miracle is a miracle made in heaven’.
Through the process I have continued to
educate my family and myself as much as possible
regarding organ and tissue donation, as well as reading
material, etc. I love my sister very much for going
through the process of being a donor and hope more
people will do the same. Also, by my sister giving me
her kidney, I was able to avoid dialysis. The doctor
informed me that had I not received the transplant when
I did, I would have had to go through dialysis again.
But prior to surgery the doctors informed that I should
have be going through surgery for having a shunt put in,
however my sister had already had a day, time, and place
set for the surgery. So they said it would be ok to
cancel the shunt, however they would have to talk to me
directly. Doctors don't always tell you that when you
have a donor willing to donate, the recipient can start
getting the necessary tests done to speed things up.
I also received thymoglobulin
treatments this time while in the hospital, it is now a
common thing they do now when doing a kidney a
transplant, (it is similar too OKT3). I received my
treatments while in the hospital while some may need to
keep coming back to get them for a short time.
I hope by having this story here that
it helps other people. It also helps when the whole
family gets tested because Michele was only a
half-sister, and half-sisters usually don't have a very
high antigen match. Our antigen match was a 4 out of a 6
so that is almost like getting a perfect match from a
stranger, yet better.
Since my transplant on 1/27/03 I am now
taking Gengraf and have a very low white count and
wonder how many people have the same problem.
After recovering from my transplant I
will continue volunteering. I love to volunteer in my
spare time to help others learn how to read (adult
literacy); a basic adult education is very
important and a lot of people take this for granted,
while other people struggle to learn how to read. I am
trained through the adult literacy program to teach
"adults to learn how to read".
My sister and I are doing better and
encourage others to call their transplant team about
organ and tissue donation, and any other donating you
may be interested in, there is no such thing as a stupid
question; we cannot better educate ourselves if we don't
I am a woman of 31 who is so blessed for the experiences her life has brought her thus far. I was fifteen years old when I fell ill with what they thought was a rare kidney disease. After a night of violent seizures, my Mom called in her Lupus specialist to evaluate me. I was promptly diagnosed with Lupus Nephritis (an auto immune disease that attacks the healthy tissues of the body). After a few very difficult weeks, my health began to progressively improve. I even regained some kidney function, although not enough to keep me off dialysis entirely. I was attending high school and working part time, while undergoing Hemodialysis. I actually felt very good considering everything!
It was when I met my Ryan that I began to think seriously about kidney transplant. There was just something special about him and our love for one another that motivated me! My mom was all ready to donate with a 4/6 match, when April 18, 1997 we were called with our miracle gift of a 6/6 perfect match kidney. Almost immediately after transplant, I began to feel better than I ever dreamed!
I was one year out when a recurrence of Lupus began. Both my nephrologist and Rheumatologist worked together to control the Lupus back into remission. I have been healthy and strong for the last 10 years! In that time: Ryan, my best friend, my love, married me June 2, 2001. We have made a lovely home together with our two "furry" babies; Calie our calico cat and Rooney our chocolate lab. We hope to add a 'little one" to our family sometime soon!
Words cannot express how grateful I am for the gift of life I received. I hope I am able to share just a glimpse of the light, love and caring that I have received in this life!
May God Bless and keep you well,
My name is Janice Clinard and I am 66
years old. I am married and have 4 children, aged are
48, 44, 33, and 31.
At age 40, I went to nursing school and
became an RN. I worked in Oncology, Surgery, Recovery,
and Intensive Care until I developed very high blood
pressure in 1993. Since he could not bring my pressure
down, my doctor checked my kidneys. The doctor said I
had blockages to the kidneys, which were causing my
blood pressure to rise—the kidney, to protect itself,
releases Renin (an enzyme) when it is not getting enough
blood. This causes the blood pressure to go up and
forces more blood to the kidney through the stenosis (or
I ended up at the Mayo Clinic where
they tried to save my kidneys with a kidney bypass. This
lasted for about 3 years, then the pressure started to
rise again and there were more blockages. Another
surgery and off I went. In 1999, my creatinine started
to elevate. This time, they did an MRI and determined
the kidneys were getting no blood, and I was, by this
time, growing sicker and sicker. I was also anemic from
the lack of erythropoietin, also manufactured by the
kidney. Erythropoietin signals the bone marrow to
produce red blood cells. The decision was made to put me
My four children all wanted to be
tested so they could come to my aid as transplant
donors. I was so touched by this. They were all tested
and two were a match, the other two were not. Surgery
was set for May 2000 and two days before Mother's Day,
my son donated his kidney to me. He was the oldest child
and he made the decision, as my youngest daughter (the
other match) had not had children yet. It has definitely
created a very special bond between all of us, but
mostly between my son and I. It is the miracle of my
life. You never know just what your kids are made of
until faced with something like this. I found out they
were very brave, wonderful kids.
My transplant went very well for 1½
years. I was on Prograf, CellCept, and Prednisone. In
the fall of 2001, my creatinine started to elevate. It
seems I did shake more than previously, but I really had
no symptoms other than insomnia, nervousness, which I’d
had to some degree since the transplant. I saw my local
doctor and he kept increasing the Prograf thinking I was
going into rejection. When the creatinine kept rising,
they tried to get a kidney biopsy and had trouble with
At this time, I got a reservation to
the Mayo Clinic. Unfortunately, the plane was to take
off at 9:30 on 9/11/01. Of course, all flights were
grounded and I was unable to get up there for another
two weeks. When I got up there, they diagnosed me with
fibrosis of the kidney caused by the Prograf. After some
research on my part, I learned Prograf can become toxic
in certain people. Others can be on it for very long
times and never have a problem. They switched me to
Rapamune, CellCept, and Prednisone. The creatinine,
which had always been 1.3 mg/dl settled at 1.7 - 1.8,
which is where it remains today.
The Mayo Clinic did a renal function
study and learned that, due to the fibrosis, I lost some
of my function and filtration. Not enough to put me in
danger, but enough to let me know that I have to take
good care of myself and of my very precious gift.
I started an exercise program, stopped
eating meat and went on a very healthy diet of fruits
and vegetables, and I feel fantastic today. I am very
grateful for every day I spend with my family.
At the age of 39 I had just started a new career in sales after some 17 years in the engineering and land surveying industry. Things were looking bright until 3 months into the new job. On June 16th, 2007 I found myself unable to breathe correctly, it felt as if an elephant was sitting on my chest. I was visiting my sister Patty on the tail end of a business trip. I asked her to take me to the hospital; a few short hours after I arrived they were telling me that my kidneys were most likely failing due to uncontrolled high blood pressure. It had been 12 years or so since I had seen the doctor, and I sure wasn't taking care of myself. A heavy smoker, and many years of the party lifestyle had finally caught up with me. I was released 4 days later, and was told that I had a 50-50 shot of a partial recovery.
When I got home and saw a local nephrologist, he suggested otherwise, he told me on June 22nd that I needed to get on dialysis and I needed a transplant. This was probably the first time in my life that I was really scared. I sat out in the doctor's parking lot and cried, this wasn't part of my plan. As I told my family and friends of the news, I had offers from about 12 people within two days to donate a kidney. On July 16th, I had surgery to place my peritoneal catheter and a month later I began dialysis. To say that I hated dialysis would be an understatement, it was uncomfortable and a big pain in the rear. 4 to 5 exchanges a day were becoming very bothersome.
On August 23, my sister and I had our initial workup at Clarian Transplant Hospital-Indiana University. We found out that day our blood types and learned that they were compatible. As the weeks went by and more and more testing, we finally found out toward the end of September that she was a match. There were some ups and downs during this process, including the fact that she had a small kidney stone in the kidney that I was to receive, but in the end they decided to go forward.
October 26th, 2007 is a date I will not forget, my sister unselfishly went under the knife to give me a chance at a better life, later that afternoon, I was making urine and other than the pain of surgery, I could already tell that I was better. She was released 2 days later and I, 4 days later. 5 weeks after surgery, I had my peritoneal catheter removed and finally felt closure to the whole ordeal. She and I are doing great as of now, and I am looking forward to a happy and healthier life, now that I have been given that life saving gift.
I am Lacie and I am now 23, almost 24. I started getting sick when I was about 19. I went months feeling like crap. I would get really hot and feel like I was going to pass out all the time and sometimes I almost did. Most of the time I would just sit down and would feel a little better but most of the time I was just sick to my stomach. Finally in December/January my mom and husband talked me into going to the doctor. We were living in Germany at the time (my husband is in the military) so I went to the hospital on Ramstein AFB. They weighed me as usual and the doctor was concerned because I had lost 20 pounds since I had last saw him which was only a couple of months prior. He thought I had a hyperactive thyroid so they took some blood and tested me for that. I went to see him on January 18th, he said my thyroid was fine but that I needed to go to Landstuhl to see an internal medicine doctor and he left it at that.
I saw her on January 22nd and was pretty surprised to find out that my kidneys were failing. She was also a little angry that the first doctor hadn't told me anything. I tried to get her to let us stay around because we had travel plans to Italy and France in February but she informed me that things were pretty far along and I would need to be medevac back to they States. I was told that the flight surgeon had not cleared me to fly commercially so I would have to fly on a military plane. I found out the day we were leaving that I actually could have flown commercially BUT I was already on this plane’s manifest so they wouldn't let me. On February 1st we flew back here on what I would say is the most uncomfortable flights I have ever taken in my life. We were on a plane where we had to sit in cargo nets and wounded soldiers were lined up through the middle of the plane on gurneys. It was freezing cold in the plane and took FOREVER. We arrived at Andrews AFB and were bused to Walter Reed. It was pretty late so I had to wait until the next day to see a doctor.
I went in to see the docs and was given a string of meds to try and keep me off dialysis until I could get a transplant. I was given an ultrasound and was told my kidneys had already shrank to 6 centimeters. They said there was no use in doing a biopsy as it wouldn't have shown anything and it was a big risk. So to this day I don't know what caused them to fail.
My husband had to go back to Germany to take care of our house and get everything shipped back to the States. While he was gone I stayed with his dad as he lives around D.C. I continued to get worse, wasn't eating and was sleeping a lot. I ended up losing a lot more weight. I was down to about 100 pounds and usually weigh about 125-130. My husband got back to the States on March 23 and the next day we were going to Andrews AFB to get everything figured out. That morning I was eating a bowl of cereal and got sick to my stomach and ended up throwing up. I called Walter Reed as they always told me if I got sick to call immediately. A temporary fistula was put in my chest and I started dialysis that day. My creatinine was over 6.
They started testing people for transplant. My husband was a match for transplant and we were scheduled for surgery in May. One week before the surgery they found he had precancerous cysts on one of his kidneys so the surgery was cancelled. Since it was looking like a transplant would not happen for a while (my family did not match), I switched to peritoneal dialysis in June. My sister-in-law Patty decided that she would get tested and ended up being a match. We were scheduled to have surgery August 25, 2005. Two days before surgery they had me come in to do labs. I forgot to mention I also have a hyperactive parathyroid. I had run out of my meds as they are special order so when they tested my blood my PTH was over 1000. They told me they had to put off the surgery until my PTH went down. I didn't want to disappoint anyone as all my family and husband’s family were flying in the next day. I told them to give me one more day, and they said they would. I had been told once before that I could take 6 of the pills (for parathyroid) at a time so I did, even though my dosage at the time was 1. So I took 6 that day and the next. Went to the labs the day before surgery and my PTH was down to 100 or so. They thought the test was wrong so they had me come in again and it came out the same. They finally said the surgery would happen.
The night before surgery they brought Patty this great meal in only to tell her five minutes later that she couldn't have it. I felt so bad because she was so nervous that day, she had only had a banana up until then. She was finally hungry and all they would give her was this drink to clean her out! Her surgery went well but they didn't know that she had an extra vein so when putting her kidney in me it took a little longer than expected to attach it. All I remember when coming out of surgery was asking my husband to put on Big Brother (the TV show) just to fall right back asleep and didn't wake up until the next day. Everything went well with the transplant and the kidney until about a year ago when I started to have higher creatinine levels. After several biopsies, I was told I had toxicity from the Prograf and there was now scar tissue. I was switched from Prograf and Cellcept to Rapamune and Cellcept. Since then my creatinine has gotten better, it’s down to about 2 now. They have talked about putting me on the list for another transplant but right now we are just riding it out and seeing where life takes us!!
My name is Leah, I was born on June 26th, 1985, and I am a twinless twin. I would have had an identical twin sister but she was still born because the umbilical cord choked her. We assume she would have had the same kidney problem.
I was also born with undersized kidneys and almost died at two months of age. Fortunately I was stabilized and did fine for several years and didn’t need my first transplant until I was fourteen years old. My cousin Lauren came out from Boston to donate her kidney to me. The surgery unfortunately didn’t go so well and when the organ was placed the main blood artery got kinked and by the next day the kidney was ninety percent dead and had to be removed. My legs were swollen and when they wheeled me into the ultrasound the tech giving it just said "wheel her to the OR".
I did not realize at this time the magnitude of what had happened or the mental anguish I would suffer in the years after this event. I don't think being 14 I fully registered the seriousness of this.
Oh, and I forgot to mention I had to have a growth shot, called Nutropin from the ages of 9 to 14 to help me grow or I would have been under 4 feet tall! I am still small today at 4"11 and 94 pounds, but much better then being that small! Of course when you are nine you don't think of that and just don't want a shot everyday. It wasn't so much the shot that hurt but the medicine.
At age 15 I began dialysis for the first time. When I was told that I needed dialysis I was scared, and in denial. It felt as though time had frozen for me and at first hearing that news I didn’t know how to handle it mentally. In time I came to accept it and remained on Hemo-dialysis for the next two years. I had a catheter placed in my chest that hooked me to the machine. Although it kept me alive I wasn’t happy.
I wasn’t able to attend regular high school and did independent study through my high school years. Then in 2002 I received my second kidney transplant and the surgery was successful.
I was fine for the first two months. Later on I developed a virus called Polyoma virus, which is a virus that only attacks the kidney. My body couldn’t fight back since my immune system was suppressed due to the anti-rejection drugs and a few months later the kidney failed and had to be removed.
I will never forget when the surgeon came in to tell me I was going to lose my kidney, surgeons have bad bedside manner and shouldn't give news like this, he was so cold and it was as if he was just telling me the time or weather, just "You're going to lose this kidney." He actually got into trouble since it wasn't even for sure at the time. The loss of the second kidney transplant sent me into a deep depression that lasted for months. There was a time when I felt that life was no longer worth living. Once more I resumed dialysis and felt as if that chain was once again put around my neck.
I ended up taking my GED but didn't have the energy to go to college yet I tried and failed since I think all the toxins in my blood were making it hard to concentrate. I had a catheter put in again and stayed on Hemo another 5 years and I wouldn't let them put a shunt in my arm. There was no way I was going to let them do this to me seeing how disfiguring it was to the people around me in the unit. I was always good about my catheters and rarely got infections. I once kept a catheter for three years without one infection!
The only good thing and neat thing during this time was when I was 19 and still on Hemo I went into a local level beauty pageant for Miss Teen USA and out of 300 girls, with catheter in my chest I made it to the top ten and got to go to the finals in Florida! I didn't place in that contest but it felt so cool to be able to do that and it made me feel better about myself lol! I still got a trophy!
So anyway, my antibody count was very high 98% from my previous transplants and so that meant very low chances of getting a match, meaning 98% of people with my blood type wouldn't match. I have O pos. But by a miracle of god, probably my sister watching over me also, I got that call I wanted to hear! The only thing that sucks and I hate is that this time they made the incision down the middle around my belly button vertically, and I already had two scars on both sides of my abdomen so I guess they ran out of space and didn't want to cut over the old scars.
On October 25th 2006 at around 4 pm they called and we all rushed to San Francisco Hospital and I got my third kidney that I still have now, and am so thankful to Jesus Christ that my long wait is over and I hope and pray daily I keep it for years to come. I have finally been able to start college and am doing well. I can think so much better - I have B's in all my classes and my plan is to be an x-ray tech, which when I’m done with the prerequisites, I’ll be able to start!
So anyway that is my story thus far and I wanted to share it and hope it inspired some people not to give up even when things seem bleak and I know what bleak is lol!
The picture below is when I was in the top ten finalists. I am the one with the purple star above my head. Don't know if you can see it but the flower on my chest above the dress was covering my catheter!
I'm a 22 year kidney transplant.
(October 3rd). I am 47 years young and, at 36 hours old,
my left kidney was removed (a polycystic tumor). Before
15 days were up, I had 2 more surgeries for right kidney
repair and bowel obstruction. The doctors told my
parents that I was lucky to be alive, but there was a
possibility of brain damage, as my heart stopped twice
and both times there was lack of oxygen to the
Hospital visits were always recurrent
throughout my childhood, always involving severe kidney
infections in the remaining right kidney. Then in my
teen years things got worse, now finding out all of
those recurring infections were the result of reflux.
Knowing I was doomed for chronic renal failure the
doctors performed a right kidney repair again. That gave
me two more years with my kidney.
Then I was toxic again. This time I
spent 4 weeks bedridden with catheters in the kidney and
bladder trying to lower the toxins in my body, but this
was a brief fix. Again the docs bought me more time,
giving me a urine bag (ileostomy). Again another two and
a half years with my kidney.
Then the Creatinine began to rise. A
Gore-Tex line for hemodialysis was put in my upper left
arm. The first attempt to put the Gore-Tex line in the
lower arm failed, as I had cutdowns in my wrist, arms,
head and ankles to find veins as a baby. The good news
is that Gore-Tex line lasted for 20 yrs. until I
requested it disconnected. Dialysis was one long year. I
wasn't tolerating it well, getting very sick, headaches,
nausea, weight loss, etc. The doctors were concerned and
were asking for a donor.
Receiving a kidney from my sister (who
is 14 years older). The match was 95%; as good as of we
had been twins. Here I am, seven surgeries later,
"alive". If it weren't for my mom and dad, sisters,
family, friends and someone who watches over me; (and
being Scottish and Irish of course), I wouldn't be
typing this letter today. I dedicate this to all who
support, live, love, and laugh with me. I love you all
I am Lou Lou, and I was diagnosed with sudden kidney failure in 2002. I was on Hemodialysis for 5 years, and part of that was 1-1/2 years of nocturnal hemodialysis which I think is the best! It made me feel I had a working kidney the next day I woke up from the dialysis.
I had a kidney transplant last July 1, 2007 from a deceased donor.
Transplant was a difficult decision for me. I told myself, when the call comes I will know what to do. So the call came at midnight of July1st, still hesitant, I decided to go ahead with it, went to the tx hospital and the surgery that 8:30 in the morning.
Recovery was a roller coaster for me, compared to others who had it so easy and smooth......but it has been better, except for a few curve balls.
Transplant is a gift of miracle, a gift of life........I am eternally grateful to my donor and family, who till now I don't know anything about, but hopefully I will in time.
I am now on my 11th month and very soon will be celebrating my FIRST YEAR kidney birthday!
I am very happy to be part of the TX buddies who is like my family now.
My name is Mary-K Voumard and I am 48
years old. I have two sons, Jeremy 28 and Rob 21. They
are both married and Jeremy has two precious little
girls, Chloé, 3, and Piper, 7 months.
I am such a blessed person. The Lord
has given me a journey that I would not trade anything
At age 32, we discovered I had kidney
disease and was born with only one kidney. Over the
years, I have struggled to stay healthy, but two years
before my transplant, my disease was worsening. In
January of 2000, I contracted E. coli. Here in Arkansas
that January, lots of folks were fighting off the flu,
and I thought I had a bad case of the flu. Over the
weekend, I continued to get sicker, so on Monday morning
I called my doctor for an appointment. I was told that
he was out with the flu! I thought I would tough
it out and, given some time, I would improve.
By 3:00 that afternoon, I had 104.5º
fever and became euphoric feeling. I went into
respiratory distress and could barely dial the phone for
my husband Mark to come home.
When he got home, I could hardly speak
and my color had turned green with my lips being blue. I
was dangerously sick.
Mark rushed me to the ER at Baptist
Medical Center where I was admitted and diagnosed with
End Stage Renal Failure. I spent 10 days in the hospital
on lots of IVs and was told they needed to start
dialysis, but I refused. My nephrologist respected my
wishes and started me on a regimen of meds to assist me
until we could find a suitable kidney.
My Mother, who at the time was 82,
wanted so badly to give me one of her kidneys. She was
so precious. Being the Christian she was, she prayed for
me daily and also asked the Lord to take her and not me.
One year after my transplant, I sat by my Mother’s side
as the Lord took her home. You see, the Lord gave me a
second chance with the love of my dear husband Mark, He
allowed Mark to donate a kidney to me. The transplant
took place on July 11, 2000.
This story really isn't about
me. It is about the precious family I have who
sacrificed and trusted and depended on faith to help me.
Without faith, I never would have made it through the
things I did. I have the most awesome life, and always
have had. I ask the Lord often to make me an example of
His love and let me share with others comfort and
My journey is not always easy and there
are peaks and valleys but what a fabulous life I have
and ever so thankful for my second chance.
The morning my Mother died, they were
taking her out of the house and I had walked outside. It
was just daylight and as I looked up into the heavens
the moon was still in sight with a single star beside
it. I was so sad to tell my Mother good-bye, but I knew
she was at peace for herself and for me, because I am
very much alive.
Encourage someone each day: smile at
folks you encounter, be the best you can be. Most of
all, love your life and be thankful of all your
God Bless each and every one of
Hello. My name is Michelle Martin. I am 34, born on March 13th, 1973 in Passaic New Jersey. Currently, I live in Pembroke Pines, Florida, with Ty, my husband of almost 12 years. I received my kidney from my sweetie on July 13th, 2005 at Jackson Memorial Hospital in Miami, Florida.
In August 1998, we purchased our first home. After a few years of marriage, we continued to plan for the future. We made appointments for our yearly exams. I always had been adamant about going to yearly doctor visits, routine dental cleanings, exercise, etc. When our office called with the test results, we were told that Ty’s tests were fine, but that my urinalysis was abnormal. After a few more tests and a kidney biopsy, I was diagnosed with Lupus Nephritis. My dad has had kidney problems due to Goodpasture's Syndrome and is currently awaiting his own transplant, plus one of my younger brothers had been diagnosed with lupus just a few years I was, so why did I think I was special? As March to September 1999 passed, I became deathly ill. I ended up going through six months of chemotherapy (Cytoxan), Epogen and Neupogen injections to keep my blood counts up and massive amounts of prednisone given in bolus doses. After five years at the same company, I had to leave my job as a secretary and apply for Social Security Insurance, or disability (SSI). All at 26 years of age.
Throughout 2000, I felt better. Then, on the morning of September 11th, 2001, my doctor personally called me at work, “I’m sorry to have to tell you this, but your ANA [antinuclear antibody] levels are up, and you need to start chemotherapy again." I began to cry, but everyone was crying that day, so I hid my illness for as long as I could. After only two months of chemo, I became anemic again and was visibly exhausted. Although I wanted to finish my BA, I had to skip the next semester at school. At work, I could no longer hide my condition. I confided in my superior and she cried.
Once again, I was admitted to the hospital and placed in isolation. Chemotherapy was stopped; my body couldn't handle it anymore. On administrative leave from work, I was back on heavy-duty steroids. My husband was a true Angel of Mercy. He helped me bathe when I was too weak to wash myself, fed me when my hands would shake and gently held me as I cried. Again, I lost my job, so I was back on SSI. I recovered at home, alone with Ty and my cat, while the rest of the world seemed to go on without me.
From September 2001 to January 2002, I had a port surgically inserted (the first of ten) into my left subclavian artery. I am 5’8," but my weight dropped to 108 pounds. Incredibly disheartened, I began taking antidepressants.
I contacted my nephrologist and discovered that I was eligible for a kidney transplant, we began the process in March 2003. Things were improving until I started to have pains in my back. Visiting the now-familiar ER, we discovered fluid had built up between the spaces of my lungs. I had to go back on dialysis immediately. I spent my 30th birthday on dialysis and oxygen.
In September 2003, I was rushed to the ER; this time I was limp and could barely stand up. I vomited and passed out upon arrival. I had to be intubated. I almost went into cardiac arrest. I was in ICU for a few days, then, due to complications brought on by immunosuppressive drugs taken for lupus, in an isolation room. I was hospitalized in ICU from September 2nd, 2003 through January 5th, 2004. While there, I became septic, had to have emergency surgery to remove my enlarged spleen along with my large intestine as CMV had destroyed it. An illiostomy was created. A feeding tube was inserted and a tracheotomy was cut into my windpipe. I was in a drug-induced coma for six weeks. Five blood drives were held and I received over fifty pints, along with plasma. There was plasmapheresis, IVIG, and a host of other things; during most of this, thankfully, I was unconscious. I had many infections, and was on every antibiotic trying to fight them. It was feared that I incurred brain damage from subsequent fevers. I’m told that I became jaundiced and that all my organs started to show signs of failure. I had just about every CAT scan, cardiac catheter, lung tap, breathing treatments, etc. I remember the evening I was finally discharged: it was as if I were famous. The entire staff at the hospital, from the nurses to the cleaning crew wished me well, even though I didn't remember half of them.
I started driving myself to dialysis only a few weeks later (as driving was still easier than walking) and we began the entire transplant process again. During 2004 alone I visited the ER on 24 separate occasions. Seven different people were tested as potential kidney donors: two cousins, my mom, hubby, friend, mother-in-law and father-in-law. My mom was naturally the best match, or matched 3-6 antigens. Unfortunately, she was disqualified after enduring her own biopsy. So, I sat on hemodialysis for a total of two and a half years.
It wasn't until January 2005 that I was officially put on the ‘active’ list for a cadaver kidney. I was called three times, but it was determined that my hubby was still the best choice although originally not selected by the transplant team. I got the last call for a cadaver kidney on July 12th, 2005, less than 24 hours before Ty and I were scheduled for our surgeries, and begged my husband to reconsider. He just looked into my eyes and said the sweetest thing that I've ever heard, “Baby, this is my life, too. Even if you were just my friend, and knowing all that you'd been through, I'd still do it." Yes, he's that good.
As we waited in the pre-op area with our gurneys touching, we held hands and were actually pretty calm. I think that I was more nervous for him; I had already been through about 10 surgeries and he'd never so much as had a tooth pulled. As they wheeled him away to surgery, I must have went into a “zone" until I could see him again. Four-plus hours later, we were together again. I was asking for pain meds ASAP, while he, behind a curtain simply said, “Quit yer bitchin'!" I've never been so happy to hear someone tell me to shut it! They did an open nephrectomy on him and had to take half a rib. He wasn't feeling it then, and said over and over that it was the “simplest thing" and that everyone should really be doing it. The next day, the pain was there, but he was firm in his decision and, to this day, says he’d do it again.
As of January 21, 2008, it has been two years and six months post-transplant and, other than two colds (I know just where I got them!) and my first-ever UTI, everything has been great! And the best news? We welcomed our son Jake Alexander less than two years after the transplant. The major upside for me--other then actually living--is everything else that comes with it. Downside? I can never complain about football, or much else, ever again (I still do, though)! God bless all donors, recipients and their physicians that have gotten us to where we are. Thank you all so much! Enjoy your life and try not to sweat the small stuff.
I am Rohan Patel, aged 24 years. The journey of my deteriorating kidney started on 5th of September 2005, when on 10th of September I was going to get engaged to a girl whom I loved beyond limits.
Two and a half years back I had a history of nephrotic syndrome which was suggestive of diffuse proliferative glomerulonephritis to which I was treated with steroids. I had normal serum creatinine then. On 5th of September 2005 I developed general anasarca following an episode of fever (my face and feet had swelling) so my dad consulted our family physician. He suggested I be moved to a specialty hospital and get tests done. On examination I was found to have end stage renal failure and was started on haemodialysis 3 times a week for four hours each. In this process a fistula was made on my left hand on the day I was about to get engaged (my to-be-fiancé had come to meet me in the hospital). The dialysis continued for four months.
All my family members i.e., my father, mother and sister got their tests done for donating me a kidney and fortunately all of them were a match for me. My sister insisted that my mum had to take care of me so she should decline and finally my elder sister (32 years) came forward to donate her kidney. Meanwhile she got prepared by undergoing rigorous testing and I underwent a kidney transplant on the 5th of January 2006. My surgery was performed at Muljibhai Patel Urological Hospital (Nadiad) gujarat India, which is supposed to be one of the best hospitals for kidney in Asia. My surgeon (Dr Mahesh Desai), my Consulting nephrologist (Dr Mohan Rajapurkar), and his entire team of surgeons and co-workers helped me to a successful transplant. I was discharged from the transplant suite after 15 days with serum creatinine level 0.9mg/dl and was advised to follow up in the OPD every alternate day. This continued for four months. After that I was asked to go home and have follow-up checkups every four months.
Now I am into my third year of successful transplant. I enjoy life as it is today. Can do everything that normal human beings do. In fact, "WE TRANSPLANTED PEOPLE ARE SPECIAL COS OTHERS HAVE JUST TWO KIDNEYS WE HAVE NOT ONE TWO BUT THREE". I feel so blessed to have such loving, giving, and supportive family and friends. They picked me up from dialysis and cheered me up when I was down, which was sometimes rather often! They brought me meals, and prayed unceasingly for me. In the end, the challenge was worth it because the benefits of having a new kidney far outweigh the struggle to get there! Last but not the least I am very much thankful to my sister in fact god in real life who did not care for her own life and put herself under the surgeons knife for no benefit to herself just so I could live a healthy normal life. Thank you loads Sis for GIVING ME A SECOND CHANCE TO LIVE LIFE, I wish every brother in this world has a sister like you.
In October 2001, I was 13 years old and
got very sick one day. I was unable to use my right hand
and was not talking in understandable form. My mother,
father, and 3 year-old brother walked with me out to the
car to take me to the hospital, but I collapsed and had
a seizure. I was rushed to the hospital, and then sent
to St. Louis Cardinal Glennon Hospital. There I was
diagnosed with kidney disease (Membranoproliferative
Glomerulonephritis Type II).
I went home, and soon later found out I
had to be on dialysis. I was a 14 year-old teenage girl
on hemodialysis, 3 evenings a week for 3½ hours, being
unable to participate in school sports. I was on
dialysis for 13 months, while we looked for a donor. My
aunt was the best match. When it got to be time for her
last test, about 3 weeks from the set transplant date,
they told us that the arteries into her kidneys were 2
into each, and were too small. She couldn't be a donor.
We were all crushed.
I had been on the transplant list since
November, after she couldn't be a donor. My family and I
were soon faced with a hard decision. The graft in my
left arm was clotted off again for the 5th time,
and it was already so ragged that they weren't going to
'fix it.' I had a dialysis catheter in my neck, but that
couldn't stay in for very much longer. I didn't want to
do peritoneal dialysis at all, where you have a catheter
coming out of your stomach and put 'cleaning solution'
into your peritoneum each night while you sleep or 5-6
times during the day.
On December 16, it was only 8:40 AM and
I was at school. Another aunt of mine is the secretary
at the high school and she came to my class and called
me into the hall. She was sobbing and she told me that
my mother had just called, she was coming to get me
because a donor had been found...and I was the most
The surgery lasted 2 hours and I was in
the hospital for 5 days. I returned home and back to
school two months later.
I have a new lease on life, and I
couldn't be more grateful. Everyone needs to be an organ
donor; it's a wonderful thing!
My name is Alese. I am married 37 years
to a wonderful and outstanding man. He is my support,
caregiver, and driver! We have two very handsome and
successful sons. They make their parents proud! I am a
former Realtor, however, I don’t drive and can’t read
small print, so I have retired. We live outside Fort
Lauderdale, Florida, approximately 45 minutes from
UM/Jackson Memorial Hospital in Miami, where I had my
Pancreas/Kidney transplant due to Diabetes on April 22,
I started with kidney disease (spilling
protein in my urine) until finally kidney failure. I
went to the dialysis center for approximately 13 months,
before the Gift of Life call.
On April 21, 2003, I received the best
call of my life. A transplant possibility was at hand.
We drove down to JMH for preliminary testing and were
told to return home. I received the call to return at 5
pm. Surgery began at 11 pm, and ended successfully after
I thank the teams of Dr. George Burke
for the wonderful care and their masterful skills, and I
thank the fantastic nursing team on the transplant floor
at JMH for their continuous care and understanding.
My home recovery was a bit slow and not
anything I have ever experienced. Four long months post
transplant, I began to be me again! The worst part was
the tremors, but as the meds were reduced, the tremors
began to subside. I still have residual mild tremors in
my hands, most noticeable by others when holding a cup
or writing with a pen. Most of the post transplant
feelings—weakness , lethargy, and mild depression—are so
deep in the past that it is hard to remember.
I do continue to struggle with low
blood pressure (orthostatic hypotension) and
hypertension, anemia and the retinal damage remains. I
can’t complain, I’ll take what I do have. I take
Florinef for the hypotension, Procrit injections for the
anemia and Nifediac for the hypertension along with a
myriad of other meds including CellCept and Prograf,
My birthday is April 1st, so you can
imagine, my transplant was a true gift, 20 days
I enjoy reading, needlepoint, being
with family, friends and boating all year in the many
waterways including the Atlantic Ocean nearby. I love
southeast Florida with its beauty and a wonderful place
to live and vacation.
To all transplant
recipients and donors, may we continue to enjoy good
health and long life.
In 1984 my brother and I were diagnosed
with diabetes. We both started out on insulin right
I did pretty well with my blood sugars
for a long time, and then they started jumping up and
down. It was hard to keep them regulated, so the doctors
decided to put me on two shots a day, and to check my
blood sugars more throughout the day. Do you know how
hard that was being a senior in high school, getting
excited about being out of school and planning my
future? But it was one thing that I was obligated to do
for the rest of my life.
Later on my blood sugars went way out
of control and landed me in the hospital's ICU with
ketoacidosis. That was the worst thing that I had
experienced in my life. It was a scary feeling:
wondering what was going on and what was going to happen
to me. I didn’t know if my life was coming to an end or
what. My blood sugar was in the 800’s; the doctors and
nurses finally got my blood sugar back down to
Once again, my insulin doses were
increased. I was told again "watch your blood
I thought that I was doing really well
after that big scare, until I started slowly developing
other complications from the diabetes.
The first problem I noticed was that I
began losing feeling in my hands, legs, feet and toes. I
could not feel much difference between hot and cold,
between sharp and dull. I knew diabetes was taking
control of me worse than I ever imagined.
The doctors told me that I needed a
nerve conduction test to see what damage I had in my
nerve endings. Sure enough, I had nerve damage and there
was nothing I could do about it.
After all of this was discovered, my
mother's side of the family started to have burning,
swelling and pain in their feet. All of my mother’s side
of the family was tested for CMT, Charcot-Marie-Tooth
Syndrome [named for the three researchers who discovered
it]. Unfortunately, I tested positive for it. I have to
wear braces on my legs and feet to help me walk. I can’t
bend down, run, stand on my toes or climb stairs.
I went on several years with nothing
major happening to me. My family and I decided we would
move from Mississippi to Tennessee. When we got moved to
Tennessee, I had to look for new doctors for my
I found a good family doctor; he
referred me to a Diabetes Specialist. The Diabetes
Specialist thought I would do better on an insulin pump,
to help keep my blood sugars regulated. It did work
better as far as my blood sugars.
I also had to see a kidney doctor in
the same office. The kidney doctor scheduled some blood
work and kidney functioning test for me. The results
came in: my kidney function was getting bad. The kidney
doctor and diabetes doctor discussed with me a
kidney/pancreas transplant. They felt it would be the
best thing for me. I didn’t know there was such an
option. My doctors set me up to meet with the transplant
clinic doctors to discuss my health problems. The
transplant clinic doctors took over my health condition.
I was set up to see a transplant coordinator to get the
transplant process started.
First, I had to go through more tests
than I could count on my fingers and toes. After all my
test results came back all right, I was okayed to be put
on the transplant list.
Second, I had to send blood work each
month for antibody matching. In July 1998 I was put on
the transplant list for a kidney/pancreas
On August 6,1998 I called the
transplant coordinator to see where I needed to send my
blood work for my antibody matching. The coordinator was
unavailable: I had to leave a message for her to call me
back. At 4:00 P.M. the phone rang; it was the
coordinator calling me back with the answers to my
question, or that is what I thought. She told me, "Kim,
you don’t need to send any blood work you need to come
to the hospital to have your transplant". I was really
stunned; it had only been 2 weeks since I was put on the
transplant list. I arrived at the hospital and was
scared to death. They got all my paper work done, drew
blood and they came in and told me it would be in the
morning before they got to me. That was a restless
On August 7, 1998, at 1:40 P.M., I was
taken to surgery to have the transplant. The doctors
called my family at 3:10 P.M. and told them I was asleep
and they were getting the organs ready. They would call
when they started the surgery. At 3:37 P.M. surgery
called and said they had started and everything was
going well. At 5:10 P.M. they called and said they were
doing the pancreas first and everything was going good.
At 7:45 P.M. they called and was finished with the
pancreas and starting on the kidney and should be
finished in about two hours. At 10:00 P.M. Dr. Amiri
came in and said the organs looked real good and they
started working just as soon as they hooked them up.
I was in ICU for three days and in a
lot of pain (like a big truck had just run over my
stomach). I got to see my husband and all my friends and
family and that made me feel much better. I was then
moved to a regular room where they closely monitored my
The next couple of days were spent in
the hospital and the pain was not as bad. Then I started
seeing more doctors and nurses than I could remember.
After a long week in the hospital, my blood work looked
great, I was ready to travel home to finish my recovery.
How would you like to have all this affect you while you
are young? You think a lot of medical problems happen to
older people, but that is not true. It can happen to
anyone. I was 32 years old when I received my double
transplant. This was the start of my new life. It has
now been 7 years and August 2006 will be the 8th year
anniversary of my transplant. All is going good for me;
I am even in better health. I take a lot of medicines,
but it’s not like having to check your blood sugar,
watch what you eat, going to the doctor all the time or
worrying about the complications of diabetes.
I volunteer my time with Mid South
Transplant Foundation promoting Organ Donation and how
important it is. I love to talk to people about organ
donation and show them and example of me and how it
saved my life as well as others. I also participated in
the 50th Anniversary of The US Transplant Games held in
Minneapolis, Minnesota in 2004.
If you are in the process of having a
transplant I suggest that you listen to your doctors,
ask questions, have a positive attitude and talk to
other people that have had a transplant.
Although I have not heard back from my
donor's family, I still write to them and let them know
what a difference my donor has made to me in my life and
how much I Thank the donor and family everyday for
making the decision to Donate in their time of
I thank God, the donor family, the
transplant doctors and my loving family and friends for
looking out for me and giving me a second chance at
My name is Joanne Giglia; I'm 31 years
old and live in Jacksonville, Florida. I had been Type I
diabetic since the age of two.
I don't think that my diabetes was ever
really in control when you consider how methods of diet
and treatment were in 1974 as opposed to today. I never
knew how to bolus a sliding scale of insulin with shots
to level out my sugars and it seemed I was getting in
trouble no matter what I ate. It was when I went back to
school at the age of 21 and began my degree in Nutrition
that I became obsessed with learning about diabetes and
nutrition. I finally found an awesome endocrinologist
who helped me understand sliding scales and carb
counting and told me diabetics could have sugar, in
However, my problems really started
about this time, when my kidneys began spilling protein
and creatinine; then came the high blood pressure. As I
reached the age of 25, I began experiencing hypoglycemic
unawareness. My body was so used to low blood sugars I
wouldn't feel it until my sugar dropped to the 40's and
even 30's and then I started having seizures because of
it. It got so bad I was pulled over for DUI twice and
even passed out in the car while driving!
Finally, in June of 2004, my kidney levels were
dangerously close to dialysis and my kidney doctor
referred me for transplant evaluation at Mayo Clinic in
Mayo/St. Luke's is very aggressive when
it comes to transplantation. Between July 12 through
July 26th, I went through the most thorough testing
imaginable. 1 was told the first day of my testing I
would be put on the list: my creatinine was up to 5.4 at
this point. I had had it with the ups and downs of
diabetes. I had always been so independent, but diabetes
itself and the blood sugar problems caused me a lot of
insecurities. I knew when I was low; I had no control
over my actions or behavior and felt a loss of dignity.
I wondered who would want to put up with me for the rest
of their life, because sometimes even I didn't want to
deal with myself. My boyfriend had been so amazing
during this time; he always took care of me, and
reassured me things would be ok. But I was ready for a
different kind of life.
Finally, on August 6th, 2004 I was
officially on the list, had my pager and was ready for a
phone call any minute. At 2 a.m. on August 31, 2004 my
boyfriend came in and woke me up telling me the pager
had gone off. I was stunned, couldn't—and didn’t—believe
it. By 2:30 a.m. he told me we had to be at the hospital
by 6 a.m. I didn't sleep from that point on. It's funny,
I don't remember being very nervous, just in disbelief.
The transplant team told me kidney/pancreas patients
were not waiting very long at all-they said an average
of about a month! So, by 12:30 pm that afternoon, I was
on my way to get my new, and hopefully functional,
I was brought back to my room about
10:30pm, however I don't remember the first few days
after surgery very well. A lot was going on: lots of lab
work, sugar testing, to make sure things were working.
And the medicine! My body had quite a time adjusting.
The Prograf made me very jittery, and the Prednisone
make me a moody insomniac, but those things have
My tx was 08/31/04; now it is 10/16/04
and I finally feel a little like my old self, only
better. I finally stopped taking my blood sugar and have
"let go" of the diabetes. I lost about 30 pounds from
the new kidney ridding my body of all that fluid and
toxins. Plus, I didn't have to have all that juice, Coke
and candy to bring my sugar up! My sugars have leveled
out with the decrease of the prednisone and even though
I had always eaten what I wanted before (in moderation!)
now it is just different. I eat now because I want to,
not because I have to bring my sugar up. It's nice not
to have to worry about testing, insulin pumps, and I
feel a lot freer knowing I am always in control now.
Life without diabetes is definitely
worth all the meds we now have to take. Everyday, I
think and pray for my donor family. It is still so
surreal that someone not only gave me this chance, but
how everything turned out so well.
If you have any questions, I would love
to help someone else through this experience, as it was
another transplant buddy that helped me through
My name is Amanda Helderle and I was born June 18, 1976, Father’s Day if I am not mistaken. That’s probably why my Dad and I have so much in common. I was born with a genetic disease called Cystic Fibrosis. Little was known about the disease in 1976 but now the options and life expectancies are endless.
I made it until my late teens early twenties when the docs started to recommend getting a lung transplant. Somehow I contracted a fungus that created its own little colony in my upper left lobe. Boy did it cause problems for me. I was on a ton of anti-fungal medications with no result except tummy trouble and coughing up blood. When it was REALLY time to talk about getting listed, my case was considered high risk.
After a two-year wait at my normal hospital, my surgeon left to go to another hospital. I went to another hospital in my area and was told my surgery would be high risk and they were not 100% sure they could accept my case and the outcome did not look good. (This was all told to me in a more polite way, but I was hearing it mean and hurtful.) On my own I decided to find another hospital that would accept my high-risk case.
A friend of a friend knew a coordinator at the University Of Southern California Hospital. I moved shortly after my evaluation and lived in Los Angeles for two years before transplant. I loved living in Los Angeles. I was living in West Hollywood with my boyfriend, dog and step-cat.
My case was strange well I think everyone says that….. I had just spent several days in the hospital getting "cleaned out". When I finally went home I just wanted to rest and that is just what I did. I rested so deep that "my call" came and I couldn't hear the phone. Finally, I woke up to the voice of my coordinator Brandi telling me I needed to eat nothing and get to the hospital ASAP. I really didn't believe this call since I had just finished a "clean out" at the hospital and this was a day later. It took another coordinator (Jay) and my doctor (Dr Hodges, who was out of town) to convince me I was not dreaming and I needed to make a decision. My next statement was, "I drove my boyfriend to work so I will have to pick him up first", and mind you Scott worked in the San Fernando Valley and USC was on the other side of downtown Los Angeles. Brandi’s response was I think he can find another way to the hospital. What was I thinking?? In addition, Scott and I had Dodger vs. Cubs tickets at Dodger Stadium for that evening. The whole evening was shot hahah
I received my transplant on May 14, 2004. The surgery went pretty well, it took almost twelve hours. I woke up fine and after quite a bit of tinkering the doctors and surgeons got me up and running. My lungs lasted a while, I comfortably named them Mike and Ike for the candy I could no longer eat because of the steroid induced diabetes. Mike and Ike lasted for three years doing very well. I was doing so many things that I had never done before or had not done in forever. My internal body wanted to go-go-go, but my legs were so worn out and couldn't keep up. It was totally opposite of my life before. My dog even had a hard time keeping up with me.
I moved from Los Angeles back to St Louis in August of 2006. It was a mixed emotional experience. So many things were going on - I had broken up with my boyfriend, had started dating someone new and was leaving such a wonderful place like southern California. Well, I took a 10-day road trip drive from LA to St Louis. The drive was wonderful in and out of all sorts of National Parks – all beauty. I would love to do that trip again. I returned to my hometown and was thrilled to see everyone. After being here for a while a realized the guy I was dating was not the guy for me and we broke up. He went back to LA and I stayed here to live my life. My life was going just fine here until August 2007.
Transplant #2 -- during a hike in August I felt winded in a really easy part of this hike and thought it was strange, I found out soon after that I was in chronic rejection. Some people have lived in chronic rejection for ten years or more. Chronic rejection hit me early and by January my lung function was 15% down from 89% in November. The doctors here at Barnes thought I should go on the transplant list, which I did in January. By Feb 14th I had my new lungs, excuse, my second set of lungs. Physically the surgery has been good but the emotional part was/has been worse. But I am doing very well!!! And I am so happy to begin my new second life. I’m just not 100% what I am going to do with my life, but I have a million and one chances.
I love being a transplant buddy. You can always email me if you have any questions
I am back in Bucharest-Romania since 1
December 2001. I did not know what will happen when I
came back. From the airport I had to go to my cousin's
house, actually a single room where I had to stay with
her and her boyfriend. My mom had to stay away from me,
cause there was no place for all of us. So she got to
one of her friends, and sometimes to her sister's
On 21 December I got on TV here, and
the city mayor gave us a new apartment, with two rooms.
I also got a computer and some money at that time. The
apartment was empty of course, but my mom did manage to
buy all the things we needed. Now my home looks
extremely cool, cause everything is so new. I have
appeared on TV and radio several times since then.
I am getting my medications for free
here, actually just the immunosuppression. But they only
have small pills. Like Neoral, they only have 25 and 50
mg pills here. And the CellCept, just 250 mg pills. I
don't get it why they don't have any bigger... And the
other meds I need I have to buy them, and maybe for
someone from another country might sound cheap, but here
the average salary is less than one hundred US dollars,
and I have to pay for my meds more than 100$ per
Then I have another problem. I am the
first and the only patient with a lung transplant here.
I thought our doctors here will manage this situation,
but they have no technology and no medicaments and not
so much knowledge about transplants. And so, they cannot
tell me ever if I have a rejection. This is my biggest
fear, and also not to get infected, because the
hospitals here looks like hell on earth. When I was in
Vienna in the hospital, they had a picture on a wall,
with a photo of the AKH hospital, made in 1936. Well,
believe me, most of the hospitals in Romania are even
worse than that photo. And also because here the system
doesn't pay the hospital personnel as it should, the
patients have to bribe everybody to get a little bit of
I am doing my checkups here, blood,
lung function, x-rays, ct--and the good thing about it
is that I am in my country and I know how this sick
system works, and also all this is free for me, as long
as I don't go to any of the private clinics here. (I
forgot to tell you: There are also extremely good
clinics, but they are private and I have no chance of
getting there because of the financial problem.)
I had to stay for about one week in the
military hospital here, cause I had fever. They have no
idea why I had fever... funny. They performed all kind
of tests here. Ct, x-rays, blood, echography for about
five or six times. Cause of my stomach pains I also had
at the time.
Now I am at home. I am pretty far from
the hospital also, and is a little hard for me to find
an ambulance to get me to hospital for my checkups,
cause I shouldn't travel with the bus. If you don't live
in Romania I don't know if you can understand, but
people here live in much misery and most of the people
are not very civilized. I don't want to blame anybody,
cause there are also many civilized people, but I think
because of the money problem, people here don't care
much about the good things in life. They just try to
survive, no matter if they hurt anybody. (UUUUHH, I am
such a philosopher sometimes..!)
I also discover now that I have no more
friends here. I feel like an alien, I have the feeling
that I am useless. I thought I had a girlfriend back
home, but she is so cold right now, I don't know, anyway
I don't feel much for here either now, cause I have been
through too many hard moments to start worry now cause
of a girl...LOL. I cannot find somebody to talk here
either. I had no internet access since now, and I hope
my mom will manage to pay the phone line we just got,
every month, so I could keep in touch with you by net. I
got from the 2nd wind the handbook. Thanks god the post
offices are ok.
Another surprise we had when we got
back in Bucharest, my moms company, she had an internet
café with another person, so that person got the
computers and moved, and killed the company, and another
"nice" thing that happen' was that some guys have stolen
my clothes and shoes I had here in Romania.
Now, I want to live, but I don't know
how. I have nothing to keep me motivated, I just believe
god will help me. I think the hardest thing now is that
deeply in my soul I feel so lost and so alone.
I will have to go back to Austria at
the end of February, but I think I have no chance cause
of the money problem and the bureaucracy here. Since I
have no insurance there I will have to pay for
everything. Hopefully my mom will figure out a way to
solve this problem.
On 22 Feb. I hope I will have 6 months
since surgery. And on 23 Feb., 23 years old. I feel like
my last four or five years have been stolen from me. I
lost absolutely everything, and now I have to begin my
life in a different way. So different. I want to stay
Sometimes I feel like crying and I
can't. But some other times I laugh a lot. I discovered
also that I lost interest for things that before surgery
was so exciting for me. The only thing that still make
me happy for few days are buying new things, SMS
messages if I get some, or phone calls, and good
My father died at 33 cause of a lung
disease. I wanted to do the transplant for him, and for
all other people in my country that need a transplant,
but they don't even know it is possible. ...I want to
create the coolest ever site. My host gives me free
unlimited space, and no adds at all. I have the domain
name, and I am working to create the coolest site ever
Everyone is invited to come with suggestions and ideas,
it is open, it is everyone's site, u can send me the
info u want to be on this site, or u can ask for
Actually there is no limit Everything
can be done, and will be done, in order to create the
coolest site about tx, for patients, for doctors, for
everyone. Is a lot of work to do. But this is the
My name is Brad Schneider. I received
my bilateral lung transplant on November 1, 2000. I am
30 years old and have been dealing with Cystic Fibrosis
since I was 6 months old. I was pretty healthy until the
age of 15. But that's when my health started to decline.
I was hospitalized at Children’s Hospital in Columbus
Ohio. I was in and out of the hospital all of the time.
I had many surgeries along the way.
In July of 2000, my family and I
traveled to the University Hospital of Cleveland to
discus my being placed on the transplant list. I was
pretty shocked when just a few weeks later they called
and said I was placed on the list. I tried to put it out
of my mind—I felt that it would be harder to deal with
if I thought about it constantly—but I couldn't ignore
Around Halloween I became very ill and
was admitted to Children’s Hospital with a bad
infection. Back in January of 1992, I was in a car
collision, which caused a severe hip injury, resulting
in a hip replacement. The replacement had become
infected with MRSA (methycillin-resistant staphylococcus
aureus). I was in ICU and very ill. I finally had made
it to the regular pulmonary floor when the call came. My
pulmonary doctor was concerned that the MRSA infection
would cause a lot of problems.
But the surgeon was more concerned with
the problem of not being able to get another set of
lungs. So the decision was made. I was transported to
the University by helicopter on the morning of November
1. My parents arrived a few hours later to find their
son half way through the most incredible thing, the gift
of life. I had been blessed by the generosity of
someone. And that generosity had given me life.
I was in ICU for about two weeks. Then
I transferred to the floor where I remained another two
weeks before returning home. I have had one bout of
rejection and several infections. As I sit here writing
this I am recovering from a week stay in the hospital.
Even though I have had some set backs and am still
dealing with my hip problem, it was one of the best
decisions I have made. Because it is wonderful to be
able to breathe.
I’m Preston (Buddy) Golder. At the age
of 43, I was diagnosed with alpha 1–antitrypsin
emphysema. I was transplanted in February, 1993 at
Columbia-Presbyterian Hospital in New York City. I moved
back to New York for my surgery because that’s where I
grew up, and my family and most of my friends—my support
system—are there. The period after surgery was not easy.
Everything hurt—even my mouth—and my eyes burned. My
electrolytes were completely unbalanced. The equilibrium
I had achieved with my lousy lungs was suddenly gone,
and my body and I had to learn to live with my healthy
new lungs! My leg muscles were so debilitated after 2
years in a wheelchair that I had to learn to walk again.
And I had to learn to breathe again! When you have
severe lung disease, you learn to get the maximum out of
each breath. By the time you get your new lungs it
becomes the natural way of breathing—but now you’re
really over breathing, and you tend to hyperventilate.
Until I learned to control this, I would awaken in the
middle of the night with panic attacks. But once I
readjusted, for the most part I’ve lived a fairly normal
life since the transplant.
The negative side has been that the
medication (immunosuppressive medication—which forms
part of the approximately 60 pills I must take every
day—gives me severe migraines several times a month,
occasionally so bad that I have to be hospitalized for
Because the immunosuppressive
medication weakens my immune system, I can’t fight off
ordinary infections the way most people can. Some people
on these drugs are real fanatics about protecting
themselves from infection. In general I don’t make a big
deal about it, but I have learned the hard way—after
getting sick three times—that I do have to be careful
when I fly. Because planes usually recirculate stale
air, which includes the germs breathed out by anyone who
has a cold or flu, it’s easy to catch something even if
you have a normal immune system. And even worse for me,
each time I got sick my immune system was stimulated
enough to start rejecting my lungs. I was hospitalized
for 2 weeks at a clip, and the drugs that saved my life
also made me so sick while I was on them that I
wished—briefly—I had died instead of being transplanted!
Now I do wear a hospital facemask when I fly. I get some
strange looks—but I don’t get sick! (Preston is also
experiencing liver and kidney problems as well as
osteoporosis, side effects from the medications he has
had to take both before and after his transplant.)
You’ve got to take the medications to stay alive, but
they do damage. It’s a trade-off.
But for those like me, there’s no
alternative. After the transplant, the doctors told me
that without it, I had had a week, maybe two, left to
And now—I can breath again! I can run
up a flight of stairs again—and not even get winded! I
would do it all over again without a doubt. You do trade
one set of problems for another, but with healthy lungs
and a positive outlook—you really can live a relatively
Our friend Buddy Golder died on Thursday, June 1, 2006.
He will be missed.
My name is Chanin; I am 28 years old
from Southern California. I received a bilateral lung
transplant September 30, 1996 at UC San Diego due to a
diagnosis of Bronchiolitis Obliterans Organizing
Pneumonia (BOOP) complicated by the development of
My illness began January 1994 when I
was 14 years old. I was not diagnosed with this disease
until almost 10 months after I initially started showing
symptoms. During those ten months, I practically lived
at the hospital, often times in the ICU, with severe
chronic double pneumonias and lung infections. I
underwent an emergency open lung biopsy October of 1994
and was then diagnosed with a very progressive form of
Unfortunately by that time, my BOOP had
left severe, permanent damage and scarring to my lungs.
Before my official diagnosis, my previous treatments had
included plenty of steroids, antibiotics, oxygen
therapy, IV feeding (TPN), inhalers, nebulizer
treatments and percussions. After my diagnosis my
pulmonologist became even more aggressive and in
addition to these medicines, he put my barely 73lb, 5'3"
body on even more massive doses of steroids, as well as
Imuran, Cytoxan, IV antibiotics for bacteria found in my
sputum, IV antivirals and many other sputum-thinning
medications. I became so weak that I was no longer able
to walk and I lost my hair.
After months of this treatment, the
doctors saw no improvement and each of my lung x-rays
showed more and more scarring. My PFT’s had dropped
drastically and by that time I was on a minimum of 4
liters of oxygen 24 hours a day. It was then that I was
told that I was rapidly declining and since there was no
cure for my disease, I would need a lung transplant in
order to survive. My family and I placed our faith in
God and decided to go for it.
It took me months before I could get
down to 25 mg of Prednisone per day without landing in
the hospital. Once I was somewhat “healthy" enough, I
was sent for evaluation at UCSD for a double-lung
transplant and was approved November of 1995. It was an
extremely rough wait for my transplant. Each time I was
placed in the hospital, which was often, I became
ineligible. Finally 11½ months later, I received the
call that a set of lungs was available for me.
At 17 years old I received my
transplant. Since then I have been able to accomplish so
many things. I was able to graduate high school, then
college, receiving my Bachelor's degree in Psychology,
then use my degree, watch all three of my nephews be
born and watch them as they grow, get married and buy a
house. I was even well enough to be a gymnastics coach
for a while, as I had been a gymnast as a child for 10
years before I became sick.
Overall, I have been healthy and have
led a very happy life these years post-transplant. I
have had a few complications including having some sinus
problems requiring two sinus surgeries and a couple of
bouts of double pneumonia, some miscellaneous surgeries.
I have regular OB/GYN surgeries and I also have
Osteoporosis. I have broken one hip and 8 years after
transplant I went into kidney failure due to
Cyclosporine toxicity. I ended up with Pancreatitis and
Congestive Heart Failure and had to start dialysis. In
November of 2004 I received a living related kidney
transplant from my dad, which I recovered well from.
Last month I had a little set back when
I had some type of stomach infection and small bowel
obstruction, but that was just another surgery and now
I’m doing well again. I hope to be able to meet others
who have also had lung transplants on here and I’d love
to hear other peoples’ transplant stories. I’m currently
on the immunosuppressants: Prograf, Rapamune, CellCept
and Prednisone and then of course my huge cocktail of
When I was about 13 years old, I was
diagnosed with Cystic Fibrosis. I wasn't a sickly child,
but I’d always had bad allergies (which run in my
family). After sinus surgery to remove nasal polyps, a
cousin, who is a pediatrician, suggested I have a sweat
test. This is the test for CF. When it came back
positive, to say I was shocked would be putting it
mildly. I remember one of the first things that popped
into my head was, "Oh no! I won't be able to have
children." I wasn't aware of the dismal prognosis for
many with CF to even worry about that. Thank G-d it
really didn't affect my life for quite a while. When I
would get a cold, I needed antibiotics. I did see a CF
specialist (Dr. Gorvoy—G-d bless him, a truly wonderful
and caring doctor!) He felt I should be able to lead a
normal life. For many years I did.
I met my wonderful husband, Dovid when
I was nineteen and we got married 4 months later. Life
was wonderful. It got even better with the birth of our
first son. I had a textbook pregnancy and felt great.
Had natural childbirth and the whole nine yards. We
lived in NY at the time.
We then moved to Philadelphia, PA,
where my husband was a Rabbi who ran programs for
students at the University of Pennsylvania It was
definitely a fun place to live. When Son number one was
14 months old, our first daughter was born. We were so
blessed. Again, it was an easy pregnancy, with some more
colds and coughs but nothing terrible.
We moved to Florida due to a change in
work for my husband. He became a Rabbi in South Florida.
Son number 2 was born shortly after we arrived.
I was teaching as well a mothering.
I'll admit at this point working with preschool kids
isn't the best way to avoid getting sick. Son number 3
was born. After this pregnancy, which was also very
easy, I was getting infections more often. But I was
always private about my CF since that wasn't how I
identified myself. When I was expecting son number 4, I
did get a very bad infection and had to be hospitalized
and on Ivs for the first time (at age 26), which I
thought really impressive. I was hospitalized once more
during that pregnancy. I did stop teaching at this point
to avoid being exposed to sick little kids. I had a
super easy delivery. My doctor at the time thought
having more children may not be in my best interest.
Not everything is up to doctors and
when our number 4 son was 4½ years old, our youngest,
another girl was born. We were really thankful to
G-d beyond any way I could put it into words. Somewhere
along the way during this time, I picked up
Burkhold-eria cepacia. This bacterium invades the lungs
and is very aggressive, causes much lung damage and
becomes resistant to almost all antibiotics. The doctor
I used at the time was very casual in telling me about
this and didn't explain that I was facing a very serious
situation. I needed and began receiving Chest Physical
Therapy twice a day. Which is really essential but a
very big pain in the neck when you have 6 kids to take
Now I began the fun of insurance wars.
They felt that paying for CPT for 30 visits a year was
more than sufficient. Do the math, that's half a month.
I was blessed with a respiratory therapist who is truly
a lifesaver. Her philosophy - A patient needs her she's
there. And this is after a rather bumpy start when I
made it clear I didn't want her to be there.
I changed doctors, which was a
lifesaving move on my part. Dr. Morton Schwartzman, of
the Joe DiMaggio CF center, is one of the most caring
and devoted doctors. He worked very aggressively to get
me on the medications I needed. Unfortunately that
wasn't enough. I was hospitalized many times, once for a
five-week stay. He mentioned Lung Transplantation to my
husband who wisely told the good doctor not to say a
word about it to me. I wasn't ready to even think about
that. I just never thought it would come to that.
Several weeks later he did bring it up
at an office appointment. I did the mature thing. I told
him I don't want to hear this and I drove home crying. I
was definably getting much sicker, but I couldn't see
myself as a sick woman.
Finally I saw that things were only
getting worse. I was always on IVs, or so it seemed. I
had to use O2 at night. So I told him, "Okay,
look into it." Dr. Schwartzman already had all the info
for me. He said I want you to go to Duke University
Medical Center in NC. That's where I would send someone
if it were my family. Little did I know, I would have to
first go for an evaluation and sell myself to the
transplant team at Duke. They determine who they feel
are good Candidates: people not to sick, not to healthy,
but mentally stable, with a good support system and of
course good medical insurance coverage or a lot of
I was very scared at this time, now not
of the transplant, but what if they didn't want me. The
team there is wonderful, but going thru the evaluation
it was like good cop, bad cop. Fortunately, my husband
and I always can find humor in things and turned our
5-day trip to NC into a mini-vacation (sort of).
About a week after the evaluation, the
transplant coordinator said, "We feel you won't survive
a year without the transplant. So get your family and
plans in order and be in NC in three months." Whoa! Of
course I cried for about an hour and then within a
matter of days had all our plans worked out. One close
friend in SC took 2 of my sons to stay with them as long
as necessary. My 22-year-old brother, who at the time
was studying in Israel, told me he was all mine and
could stay in Florida for, as long we needed. He stayed
in our house with our 3 older children, so they could
continue with their own school, friends, etc. Our
youngest was going to NC with us. Very close friends in
Raleigh with a daughter close in age said they would be
happy to have her stay with them as long as needed. What
amazing friends and family. Not only that our community,
locally, nationally and internationally helped raise
money we would need for all the expenses. The help of
all these people and their prayers are what got us
through what could have been a very hard time.
On March 12, 2001 we temporarily
relocated to Durham, NC. On the third night there, I
hear my husband answer the phone and say "LUNGS!" I just
stared at him. He said that was my transplant
coordinator and they thought they had a match for me! My
first thought was, "We aren't even unpacked." We rushed
to the hospital, not even sure how to get there. After
be taken from the ER to a room, and asked hundreds of
the same questions by different doctors, we had to wait.
5 hours later we were told the lungs were no good and to
go home. In a way I was relived since I didn't feel
ready yet, but on the other hand it would have been nice
to get them so quickly. (It was also our 15th wedding
anniversary that night.) We went home saying whatever
happens is for the best.
We went through some rough times after
that. A few days later I was in the hospital with a very
bad infection. Then my kidneys started failing. They
moved me to ICU and took me off the list
It was a very scary time. I didn't know
if I would make it or not. But my feelings were: " There
was no choice, I had to survive for my family's sake." I
felt like I had so much more to accomplish.
I was now on O2 24/7. Not
fun. But we could joke about even that. Like when the
kids would be visiting us and someone would be standing
on the O2 line and I would start to pretend
to not be able to breathe (guess you had to be there!)
We felt very strongly that G-d was
taking care of us and at the right time it would happen.
It was a Friday and my two oldest sons had flown in for
a visit. We were spending the Shabbos (Sabbath) with our
friends in Raleigh. My husband and sons were in the
synagogue, and I heard my cell phone ringing. (On our
Sabbath we don't answer the phone.) So I said "If they
are trying to reach me for a tx, then my beeper will go
off." Sure enough that's what happened next. Even though
it was our Sabbath, I was allowed to use the phone since
it was an important medical issue. I reached the
friendly Tx coordinator on call and she said "I think we
have a match, please come to the hospital." I was so
surprised, I don't know why. So I was making polite
conversation with her. Saying things like "Oh, I don't
think I've met you before, and it's so nice of you to
call." Okay, I was a little nervous. My friend ran to
get my husband. Let me tell you there was nothing harder
than saying goodbye to my 2 sons and daughter that were
My husband and I went of to the
hospital. We knew what to expect this time. We got there
at 9:30 PM. They didn't tell us until 5:00 AM that the
lungs were good. We did a lot of praying while we waited
for the news.
I was finally taken down to the OR. I
couldn't find works to express my feeling to my husband.
But I think he knew what I wanted to say to him. I could
never have gotten through the years of having not felt
well, his being mother and father very often, as well as
all this waiting without his constant love and
He had the harder job now, since I was
asleep. To make an even longer story shorter, next thing
I knew I woke up and the first thing I saw was my
husband's face. Oh, and the day I woke up was Mother's
Day! I was out of bed sitting in a chair for about 5
hours (thanks to lots of pulmonary rehab prior to the
transplant) I was off the ventilator an hour after I
woke up. The next morning I was moved to the transplant
floor out of ICU. That evening they had me out of bed
and walking around the hall.
I would be lying to say it was a piece
of cake from there on end. I had some minor set backs,
but that's all they were, set backs. With the support of
my husband, therapists, nurses, friends and the most
incredible transplant coordinator--Jean Rea--I survived.
Not only that I can breathe on my own. I feel wonderful.
My tx was on May 12, 2001. We didn't return to FL until
the end of August. But I made it back in time for my
kids to start school and I could be there!
I now take Karate classes, teach a
woman's study group, give cooking classes and also just
started to learn how to quilt. Not to mention being able
to be normal wife, mother, friend and I hope inspiration
Going through everything at the time
wasn't so hard, because I felt that I had to do what I
had to do. My husband didn't have it so easy, some of
the drugs made me a little nutty at times. Looking back
at everything, I marvel that my family went through so
much. I strongly believe G-d gives us the strength we
need to handle every situation. We made some incredible
friends throughout all this, for that alone it was worth
it. I try not to take any moment for granted. It's now
been 1 year and 4 months since my transplant.
Let me tell you breathing is a
Christy - Living-related Lung Tx
I was diagnosed with Cystic Fibrosis when I was four years old. I lived a very normal childhood despite having to take enzymes with every meal and have chest pt from my mom or dad to help loosen any secretions in my lungs. I started using a nebulizer once a day at the age of 16.
I was first hospitalized at the age of 23 while attending nursing school. I was married a year later and had a daughter Casey at the age of 25. I worked in the nursing field for three years before being diagnosed with a mycobacterium in my lungs. Some of the medications I took for the mycobacterium gave me toxic hepatitis. It resolved after a couple of weeks, but my weight dropped to 87 lbs. during that time. I received a port soon after diagnosis, because I had to receive long-term IV antibiotics.
Over the next year, my lung function fell pretty rapidly, even though I was being treated for the mycobacterium. My doctor then recommended that I start thinking about a lung transplant. My lung function was about 25% when I first started the evaluation for transplant. I was put on oxygen 24/7 at that time.
I was first referred to Barnes-Jewish Hospital in St. Louis, but was told there was a 2-year wait for new lungs. Since my doctor didn't think I could wait that long, he then referred me to Duke University Medical Center. After doing some blood work, they found out that I had a large number of antibodies in my blood that made me incompatible with 96% of the population. This meant that it would be very hard to find a cadaver match for me, and that I should consider a living-related lobar transplant. In other words, they would start testing family and friends who would be willing to give up a lobe of one of their lungs. They immediately found a match with my Mom's brother Joel. All we had to do was find one more match and I could receive a transplant. About 40 family members and friends were tested.
While all of these people were being tested, I was going through treatment to try and lower the antibody level in my blood. The lower it went the better chance I had of finding a donor in time. I had to have Plasmapheresis treatments three times a week at Duke. This treatment is where they remove your blood and separate the plasma from the whole blood to try and remove the circulating antibodies in the plasma. Each treatment lasted about two hours. I then had to get a gamma-globulin infusion which lasted another two hours. The treatment lowered the antibody level some, but not like my physician had hoped. At the same time, I had to have a feeding tube placed through my abdominal wall into my stomach, because I couldn't keep my weight up. The nutritional shakes that I would put through the tube contained so much sugar and carbohydrates that I had to start taking insulin shots. I had to have sinus surgery the same month to try and decrease infection in my sinuses. Because of chronic anemia, I had to have several blood transfusions over the following months.
By September, only one suitable donor had been found, and my pulmonologist, Dr. Palmer, knew that we needed to find a second donor quickly. My hospitalizations were so frequent at that time, that we wondered if we shouldn't just move to Durham until transplant. Since, we were running out of time, the transplant team decided that my mom should be tested. She wasn't tested before now, because she is 3" shorter than I am (donors are supposed to be the same height or taller). She was a match. After going through all of the testing that donors have to go through, they determined that her lungs were actually large for her size. This was a blessing, because it meant that her lobe would be of adequate size.
The transplant was scheduled for Oct. 26, 2001. Unfortunately, it had to be canceled because my mom developed a fever the night before surgery. They rescheduled the transplant for Nov. 12, knowing that I didn't have much longer to live.
On Nov. 7, I started running a fever of 103 and was admitted to the hospital. They ran some tests and took some blood cultures to figure out the source of the fever. That night, my blood pressure fell, my pulse rate increased, I had blurred vision and I became very short of breath. The physician on call had them prepare a room for me in the ICU. By morning, I started feeling better, and by the next afternoon, I was up doing two laps around the hallway. The physician who had been there the night before couldn't believe it. He said he was expecting to find me in ICU hooked up to a ventilator.
The night before transplant, the blood cultures came back and showed that I had a systemic yeast in my blood. This was so serious that they considered rescheduling the transplant again. Because they knew that I probably wouldn't make it if it was rescheduled, they agreed that transplant would take place on schedule, and they immediately started me on a medication for the infection. Casey stayed in my hospital room that night with Glenn and me, and it was a precious time for the three of us. At about 6 am, I started getting prepped for surgery, as did my mom and uncle. I had such a peace about me at that time. I remember a little about the OR, but they quickly sedated me. The surgery took about 7 1/2 hours and was performed by Dr. Duane Davis. My mom and uncle's surgeries took about two hours.
During surgery, the surgeons removed both of my diseased lungs and replaced them with my Mom's left lower lobe and my uncle's right lower lobe. They had to turn the lobes sideways in my chest cavity so that they would fit properly. I now had two beautiful pink lobes that were oxygenating my blood perfectly. The surgeons were very pleased with the surgery and informed my friends and family that everything went well with my surgery and with my mom and uncle's surgeries.
After transplant, my kidney function declined pretty rapidly. I gained about 30 lbs of fluid within a week after transplant. I had to be hospitalized several times within the next several months. I had to have another surgery in December of that year called a Nissen Fundoplication. Since I had reflux, they wanted to stop that with surgery to help prevent rejection of my new lungs. When I wasn't being hospitalized, I was going through rehab to strengthen my new lungs and help recover faster. I was able to leave Durham and return home 3 months after transplant. What a great day that was. My kidney function was close to normal again, and I was feeling great.
A lot has happened since February 2002. First of all, my lung capacity exceeded what they thought it would, so that has been great. I have also been able to keep my weight up for the most part. I have had many hospitalizations for my chronic sinus infections, and had my third sinus surgery in Oct. 2005. I have also been hospitalized for my diabetes. They found a mycobacterium in my lungs 3 months post-transplant, but that seems to have disappeared with medication. I continue to be deaf in my left ear and partially deaf in my right due to all of the IV antibiotics I was on pre-transplant. They thought that after I went off of the IV meds, some of my hearing would return, but unfortunately it hasn't. Because of the prednisone that I have been taking since transplant, I have severe osteoporosis in my lumbar spine. I have had 2 more blood clots which have resolved, and I am currently dealing with some chronic rejection that is being treated with an increase in anti-rejection meds. My kidneys aren't doing so well (the meds, high b.p. and the diabetes have taken a toll on them). I am currently being evaluated for a kidney transplant.
Glenn and I are divorced, and we are both remarried. The divorce has had it's ups and downs, but has been amicable for the most part. I got married on Valentine's Day, 2006 to a wonderful man named Jason. He has brought so much joy into Casey's and my life. We met at church and had a very short engagement. Casey is so happy to get a step-dad, and Jason adores her. Casey also adores her step-mom, and thinks it's pretty cool that she gets double presents, double vacations, and double holidays. Sometimes it's easy to ask "why" when bad things happen, but in the end, God always reminds us that He is in control and that things will work out for the best.
Hi. I'm an 8 mo. old transplant. (2nd birthday). I had the work done at Stanford in Ca. The doctors were the best in the world in my opinion. I'm alive and doing so well that I have a VERY high opinion of the people who worked on me.
My first birthday is 3/11/1943, the second is 6/27/2007, the day I received the donor lung, (right).
I had IPF. Found out in 2001 at Kaiser Perm. My condition got bad around Sept. 06 so I had to cut back on work. In Jan 20007 I went to Stanford H and C, spent two months doing tests and on 3/01/07 the doctor told me that the only thing that could be done was to have a lung transplant.
Without it I would have maybe two years left with oxygen. With one I could MAYBE have 15+ years if things go well. The doctor told me that at 64 yrs old I would never be the top end of the bracket of success. I asked to be listed and went through the listing process. I work for the USPS and had saved my sick leave so I had 1700 hours to fall back on. Money in the bank!
I missed a chance in May 07 -- Stanford called and I was admitted at 3am. They prepped me and I waited all day for the organ to arrive. At about 5pm the doctor came in and told us that there was a problem with the donated organ and they decided to cancel. So I was sent home.
Then on 4/20/07 I had trouble breathing so I was admitted to Stanford again and treated for, I really don't know what, but I was in for 9 days. Of course it had to do with my lungs. On the 25th I was told that I had DVT in my legs and they wanted to put a stent / filter in the vein coming from my legs. And that they would do it at 2pm the next day. Ok I said. Then at about 5pm on the 25th, two doctors came in and said that they had a lung for me and they would do it at 6am the next day. Wow. But I'm going to have a stent put in at 2pm that day. Well as would be I missed a second chance. I went home on the 27th.
The third time is the charm. I was going to my blood thin clinic at 1pm on 6/26/07. I was in the parking lot at Stanford when my cell phone rings. "Hello, this is Stanford, we have a lung for you. How long would it take you to get here." Well I was admitted at 3pm and went into the OR at 4am. I came out at 1pm and spent two days in ICU then went to IICU for about 3/4 weeks. I was discharged to ' The Home ' at Stanford for about 8 weeks. I went to rehab for 8 weeks and did OK.
I'm back at work now full-time doing all of my duties on the truck dock at the PO. I load trucks, push and pull containers that weigh up to 1000 lbs, take ALL of my meds with no problems.
I know that I had the transplant because I can see the scars but I don't feel anything that would tell me I had one. No weakness, no pain. I still have one bad lung but I feel normal.
|Dave Grisier: My Life in the Shadows
January 8, 1996
I took the last drag on my cigarette and flicked the remnants into the yard across the hood of the car. On the other side of the car (drivers side) stood my youngest daughter whom I had raised from the age of 13 when I had gotten custody of her.
That day, a few years earlier, had changed my life immeasurably. The change began at the Courthouse in Wauseon Ohio, about 35 miles from where I lived at the time in Toledo. It didn't take us long to take care of business as the Ex wife seemed to be ready to get rid of her. She was delivered there with her life contents that would be coming with us to Toledo in about 6 plastic garbage bags. I was looking forward to the change and the new responsibility, but I was totally unprepared for what followed.
The first year or two though I never felt impossible… were difficult to say the least. She had major adjustments moving from a smaller town to a city environment. I had major adjustments changing from Single Part time dad to father. But after all was said and done, I would not have missed the experience for anything in the world. You see, through our time together, the experiences, and watching her mature, I learned how I truly love the other 3 children also.
Now as I flip the butt of the cigarette into the yard, I look across the car at her and I tell her I am ready to go to my Drs. Office for a checkup. We both proceed to sit down into the car and I have the sudden premonition that I will not be coming home with her that day. I glanced over at her a couple times on that short trip to the office, having flashbacks of her as a much younger child. She always had a smile on her face, and one time she had even made a Smiley Face in her Ice Cream cone with dots at each end of the mouth that reminded me of her dimples.
We got to the office where I was the first to see my Doctor after lunch. We slowly walked back into her office where she looked at me, started me on Oxygen, and said “Dave, I want you to go right into the Hospital." She called a Life Squad, and with all the activity the adrenalin was coursing through out my body which made breathing only possible with greater effort.
The squad arrived, and as they tried to get me to lie down on the cot, I found it impossible to breathe. I became quite agitated about this and they raised the back to a more vertical position which made it better. As all of this was going on I remember glancing across the narrow corridor into a small office where my daughter was standing.
She had her back to me.
I didn't have to ask her why... I knew.
Loaded into the back of the Life Squad unit, I am under the watch of the technical doing what they do so well. In the background is the radio chatter of them talking to the ER people at the hospital. This is all going on like the softened and sometimes indistinguishable din of sounds you see in the TV shows.
My mind is traveling from one aspect of the situation to the next at a blinding pace. Attempting to make sense of it all, being pissed at myself for putting me here, will I ever see my kids again, is my daughter okay, what am I going to do next, I promised I’d be back into work tonight, why am I here?
A couple of years before, in 1994, my sister in law had a massive Heart Attack. In her case she had the best of the best at the hospital. The team pulled every stop and even went beyond the normal procedures to not let her go. I remembered her discussions of her near death experience. She spoke of floating detached while watching the team working on her, bright lights, a feeling of peace taking her over. Would I see the lights, or would I just go quietly to sleep?
At some point I must have lost consciousness as I only remember waking up in the ER with tubes and beeping sounds, and needles sucking blood out of me. Then I am gone again and become aware of a room. There is another person in a bed to my left and toward the windows. More tubes, and a constant flow of air on my face from the Oxygen Mask which is very bothersome to me.
This was the beginning of a major life change that over the past 10 years has made for many ups and downs in my life as I learned to cope with my COPD.
Not being able to work anymore and having to accept a life of disability.
The reality of life where 5 to 8 days in the Hospital with Pneumonia at least 2 times a year became the standard.
At the beginning my Pulmonologist estimated my life span to be between 5 to 10 years with the probability of it being towards the higher end of that time frame. Since that time Medication advancements have given me hopes of an extended period of time.
Jan 8, 2003
I now am looking forward to a great deal more time with my family and friends, and if all goes well come this April I will celebrate my first full 12 month period with out having to spend time in the hospital. 1 year? A Big deal? Yes. In my situation small steps are huge victories.
The bottom line? If you smoke…STOP!
If you don’t. NEVER START!
January 6, 2008
Since the time which this story took place I was close to “checking out" a couple of times. Or so those around me said.
I and my children were told that I could never have any kind of an operation. It was even mentioned that if I went into the Hospital another time with pneumonia I would more than likely be placed on a breathing machine and the kids should be prepared for the worst.
I am now going through the Pre Transplant testing at the Cleveland Clinic, where I was diagnosed with COPD w/Emphysema and serious Fibrosis. I hope that all testing soon should be done. Barring anything unforeseen I should be listed soon for a Bi-Lateral Lung Transplant, and then it will be the waiting game and keeping healthy.
Transplant Buddies, the family there and a few other sites have been instrumental in helping me cope over the past few months.
David A Grisier
My name is Frank, I’m 40 years old, born and lived all my life close to or in the most beautiful city of the world, Hamburg, Germany. I had the idea for and created the google-maps on http://transplantbuddies.illios.de
Three days after my birth I had a lung infection, spent 3 months in hospital and throughout my childhood I spent several times in hospitals. In 1998 I started to have oxygen at night and since 2001 I had O2 24h/day.
In January 2004 I was listed in Hannover Medical University Hospital and have been double lung transplanted on July 17th from 3 to 10am. Spent 5 days in coma after that, but recovered – spent 3 weeks in hospital and 5 weeks in an rehabilitation clinic.
I had 3,5 wonderful years being able to have a “normal” life doing things (again) I never thought that would be possible. I travelled around 25.000km with my car in the first year after transplant, I was standing at the base of Germany's highest mountain (Zugspitze), I swim in the North sea and the Baltic sea, did 2 hours walks at the beach of St. Peter Ording, did several flights, went do Amsterdam Netherlands, Austria and Switzerland and fall in love again twice.
I do now have a chronic rejection with my FEV1 falling within 1 year more than 1 Liter to an FEV1 around 1 Liter.
After school I started to study architecture but broke up with it because of health reasons. I became a teacher for Yoga and joined a 4 years long training to become a therapist for integrative gestalt therapy (as founded by Fritz Pearls). I taught Yoga for 10 years until I had to give up teaching because it was to exhausting for me to teach with oxygen.
I became a webmaster to several web pages and I enjoy taking photographs. I love to travel and have been to countries and places like Iceland, Denmark, USA, Soviet Union, Israel, Spain, Italy, France, Austria, Switzerland, Netherlands, Portugal, Canary Islands, Berlin, Frankfurt, Munich, Bavaria.
I enjoy visiting at www.transplantbuddies.org and I’m happy to found this page with its wonderful, caring and life enjoying special people!
A picture of me with Oxygen taken in Winter 2003.
Many of you may know my successful lung
transplant story. But for those who do not, you might be
amazed what one person has accomplished since their lung
My double lung transplant was September
12, 1997 at University of North Carolina Hospitals,
Chapel Hill, North Carolina, due to Cystic
Fibrosis.(Yes, almost 6 years! I cannot believe how
wonderful that is to say and the pleasure of
Here is my list of what I have done
since my bi-lateral lung transplant:
- Bike (my first purchase after transplant was a new
- Learn to swim for the first time in my life (8/98)
- Learn to drive a small motorcycle (7/98)
- Learn to drive a tractor, to plow snow with--our
driveway is long. (This is a big
- Farmall harvester tractor, not a yard tractor)
- Play baseball (5/98)
- Play Volleyball (10/99)
- Transplant Olympics- Played volleyball, got the
winning point for our team to advance (6/2000)
- Transplant Olympics - Ran the 1/4 mile, played
- Pit Crew for SCCR racecar, NASCAR racecar, drag
racer- truck (8/98)
- Schweitzer Soaring Plane over Elmira NY, Soaring
Capital of the world (7/18/2000)
- 5K "Run Like Hell" for CF - (10/98)
- On my sister's fundraising committee for her lung
- Caretaker for sister after transplant (3/01)
- Mentor for those with CF, and pre and post lung
transplant patients (8/98)
- Coordinator of SecondWind Lung Transplant Chat
- Named to Board of Directors - SecondWind Lung
Transplant Assoc (2/2000)
- Named as Officer of Board of Directors - Second
Wind Lung Transplant Association (9/2000)
- Named as Vice-President - Board of Directors
Officer - Second Wind Lung Transplant Association
- Created the name for the 2000 SecondWind Lung
Transplant Annual Educational
- Conference - "New Frontiers in Lung
- Part of Nominating Committee for new board members
for SecondWind (9/2000)
- SecondWind Conference Committee for 2001
Conference in San Diego (10/2000)
- Volunteer at my company which been with for 10
- Work Part time at my company (8/1999)
- Speak for OPO to high schools, nurse managers,
graduating nursing class for local college on my lung
transplant and organ donation (5/1999)
- Spoke to the employees of my company about my lung
transplant experience (3/1999)
- IACFA (International Assoc Cystic Fibrosis
Adults)- Named editor of Transplant Column for
- Board member for "Lungs for Life Foundation"
- Board Member for "Cystic Fibrosis Family
- Numerous articles written for CF Roundable, IACFA,
TSN Newsletter, Reaching Out on my transplant
- Travel by airplane for the first time in over ten
- Travel country continuously for business and fun
- Wrote and compiled book "Taking Flight: Inspirational Stories of
Lung Transplantation" with 255 stories of lung
transplant success (8/2002)
- Promote "Taking Flight" on TV - (channel 13,
channel 8) in Newspapers (Wolfe Publications) at
Organizational meetings, live radio interviews, UNOS
Publication, CF Publications, Transplant publications
There are so many adventures and ideas
I have for the future, and so many other "small and big"
things I have done, but too numerous to list here, but
it has been worth it and I would do it again in a
My name is Karen Range. Prior to February 2006 I was a fairly healthy stay at home mom of a 2 year old. In mid February I started coughing and becoming short of breath. I immediately went to the doctor and was told I had pneumonia. I was given antibiotics and steroids. I continued to worsen. I was then told I had bronchitis and given more antibiotics and steroids. This went on until I coughed so hard I cracked two ribs and was in unbearable pain. My next trip was to a Pulmonologist. He took all kinds of X-rays and CAT scans and told me that my sinuses were blocked causing the constant infection. I was put on long term antibiotics and told I would be better in 6 weeks. By now it is April and I had been coughing since February. I didn’t get any better in the next 6 weeks, so I was hospitalized for testing. A week later – the Friday before Memorial Day weekend – I was diagnosed with BOOP (Bronchiolitis Obliterans Organizing Pneumonia). I was told that with high doses of steroids this would resolve in 6 months to a year. After 6 months, I was still not getting any better. In fact, my lung function had declined slightly. I was then sent to the Mayo Clinic in Rochester, MN for a second opinion. At Mayo I was told that I had Constrictive Bronchiolitis Obliterans and not BOOP. I was also told that there was very little that could be done to help me. There was no medication that would open up the badly scarred small airways. My only hope was a transplant.
My husband and I were in shock. We had gone to the Mayo Clinic for hope not devastation. I was not yet 40 years old and in need of an organ transplant. We decided not to believe them and came home determined to find another solution. In January of 2007 I started seeing an alternative medicine doctor that thought he could help me. After months of treatments, my lung function was still declining and I was failing physically and emotionally. I finally gave up and made an appointment to see my Pulmonologist to talk to him about transplant. He was very supportive of our decision and made the referral for us at the Cleveland Clinic.
Currently, I am almost finished with my evaluation and eagerly awaiting my last appointment with the surgeon before having my case reviewed so that I can be put on the list to receive new lungs.
Transplant was something that I never thought I would ever have to face in my life, but with the help of my Transplant buddies and my incredible family I am certain that I have made the right decision. I look forward to that day that I can take a full breath again and dream of the day that I will dance with my son.
I was on the verge of turning 30 in
January of 1988 when I came down with a cold and found I
was having trouble breathing just walking across the
street. I had quit smoking three years prior to this
problem. I scheduled an appointment with my preferred
primary physician, Dr. Susan Schooley. She listened
carefully to my description and sent me for a chest
x-ray. I will never forget the look on her face when she
told me: "I don't know what you have. I've never seen an
x-ray like this before." She showed me the x-ray, then
sat me down and did an arterial blood gas. From that
moment on, for the next eight years, I was never without
my oxygen tank set first at 3 liters/min, then 4 l/min
and years later more than 6 liters/min, 24 hours a
I was hospitalized and the parade of
specialists followed. Finally, it was decided that I
should undergo a lobectomy to try to improve my
breathing. But when the surgery was preformed, the
doctors discovered that all of my lung tissue was
diseased, not just the top lobes as they had initially
expected. Lung tissue was sent out to labs all over the
country for diagnosis. Apparently the pathology was very
unusual. The consensus diagnosis came back- I had
Eosinophilic Granuloma (Histiocytosis X), now known as
Pulmonary Langerhans Cell Histiocytosis.
A doctor who I had never seen before
walked into my room and asked me if we had discussed my
lung transplant. My husband and I were stunned. This was
the first suggestion that I would have to resort to such
a drastic measure. We asked him to leave. I went home to
recover from my surgery and put my life back
I asked Steve Turpin, my pulmonary
doctor, for a prognosis. He told me I had two to eight
years to live. I said "That is a strange prognosis, what
is that based on? He said "On autopsy results." I
decided I would wait as long as I could before
considering a transplant- I read the papers on lung
transplants and was understandably scared as long-term
survival in 1988 was not the best. Things sure have
changed for the better. I returned to work and started
pulmonary rehabilitation on the same day. I worked 4
hours in the morning and went to rehab 4 hours in the
afternoon. At the end of 4 weeks, I was working full
time .My job as a laboratory research specialist was
fairly active- to go from room to room using equipment I
would walk about 6 miles a day. I also never broke my
habit of working standing up. I worked for seven years
full time while on oxygen. In April of 1992, four years
after going on oxygen, I gave birth to my daughter,
Sarah. She was one week early and small due to my oxygen
status but perfectly healthy. My husband, Rick Merritt
and I were overjoyed. We never dreamed we would be
blessed with this precious life.
Two years after Sarah was born my
condition started to decline. My fingernails turned blue
more easily and my oxygen needs went up. Prednisone
tapers helped but only for a month, then a week. I
finally listed in September of 1994 for a double lung
transplant. I quit work in March of 1995. On March 25,
1996 I received my lungs at Duke University Medical
Center from a 20 year old male African American who had
been shot. I owe him my life.
After recovery I kept a promise to my
four-year-old daughter to carry her up the stairs. Prior
to the transplant I could not manage that ordinary task
even when she weighed only 5 pounds. What an experience
to finally be able to run and play with my child! At
three months out we were able to swim in the ocean
It has now been 6 years and counting
since my transplant and life is wonderful. I am so
grateful for the time I have had with my husband and my
nine-year-old daughter. In 1998, I attended the U.S.
Transplant Games in Ohio, swimming in the 50-yard
breaststroke, backstroke and freestyle events. In 2000,
I came back for a repeat performance medalling in the
100 y breaststroke.
In addition I have spent time learning
another language, American Sign Language, and interpret
for the deaf on a volunteer basis at church. I have also
volunteered as a tutor, in the trainable mentally
challenged classroom and in a pre-school for the deaf
and hard of hearing Reaching my fifth year with
virtually no complications convinced me it was time to
prepare for a long future. I never expected to live this
long and to be so healthy! I am now pursuing a master’s
degree in the visually impaired training program at
North Carolina Central University in teaching
orientation and mobility skills to the blind and
I have also devoted time to spreading
the message that organ donation works in the hospital,
at churches, in the schools and drivers education
classes through volunteer work with Carolina Donor
Services and devoted time to donation awareness and lung
transplant patient support through SecondWind National
Lung Transplant Association, Inc and Transplant Buddies.
I am currently President of the lung transplant
association and have run the SecondWind support group
for transplant patients and their families for the past
two and a half years at Duke Center for Living.
I thank my husband for taking such good
care of me, my daughter for giving me the drive to live,
and my donor and his family for providing the precious
gift of lungs. Last, but not least, God for giving me
the faith to move forward.
Bless you all,
My name is Lonye and I live in Salem, Oregon. I have been married to my wife for almost 18 years. I was diagnosed with CF at about 3 months old. I have an identical twin brother also with CF. He is doing pretty well, lung wise and is not needing a transplant, thank God! I grew up to believe that I was a normal child with loving parents, that treated us as boys and not as boys with CF. This, I believe, has influenced my life with CF. It taught me to do what needs to be done and then go on with what you
need to do. I never let things stop me.
I've had CFRD since I was 16. I started to get my sinus issues in early 2000. I have always taken
enzymes as well. I have never been able to keep weight on. I am 5'7" and never really went over 125-129 lbs. Yet, my brother could put
on pounds easier. When I got my transplant, I kept gaining weight. I am currently at 153 lbs. I have been going on diets so that my clothes will fit.
I got married when I was 24 and we started checking into the possibility of having a baby. With CF, the only way to have a biological child was to go through the fertility stuff. After four tries and the emotional roller coaster ride from hell, we have a beautiful daughter that will turn 6 at the end of this month. Plus she looks just like me!
I was evaluated at Stanford for a transplant back in Jan. of 04. My numbers were in the high 20's but, like most centers, they want to have all the drug regimens exhausted first before any transplant. So, they said I was doing too well to have one. I made it another 3 1/2 years before I got listed. I had my first picc line in the early 2000's and probably a total of 6 or 7 regimens from 2000 until my transplant. My wife started a blog web site that led up to my transplant and there after. So, I will let that tell the rest of the story. There are 200 plus pictures. The rest I will let you guys read and look. I have met many wonderful people on these types of websites. My first one was Cf2chat back in 2003. They helped me so much to understand having CF and in deciding to have a transplant. The hardest part to me was watching people you get to know and care about pass away. Well, take care and I will try to post often! My website is www.lonyes.blogspot.com
My name is Meghann Murphy. I'm 28 years old, and I live in Lexington, NC.
I was a completely normal and healthy kid until I was 12 years old. In February of 1993, I became ill with the Flu. I had all the symptoms and felt crappy. My mom called our family doctor, but his office was full. So, he asked her what my symptoms were over the phone. He said that it sounded like the flu and to just keep treating me with the over the counter medicines. The next day I woke up feeling a lot better and my temperature was gone. I wanted to go to school, but my Mom made me stay home and rest instead. By that evening my temperature was back up to over 101. Plus, I was having trouble breathing. I remember feeling horrible and I asked her to take me to the ER.
Once at the ER, I was diagnosed with pneumonia in both of my lungs. They put me in the hospital to give me oxygen over night and medicine. During the night, I got worse and by the next morning I was in respiratory failure. Our town is small and they don't even have a pulmonologist on staff. So, they sent me, by ambulance, to the nearest big hospital, which was about 20 minutes away.
Once at the new hospital, I was put on a respirator. The doctors said that I had somehow developed a staph infection on top of the pneumonia and that it was killing all my white blood cells. Therefore, my body was having trouble fighting the infection off. They told my mother that they would do everything they could to save me, but that they couldn't guarantee that I would survive through the night. The staph germ was moving so fast, they didn't know if they would be able to kill it. I had tubes everywhere. Chest tubes, I.V.'s, you name it, I had it.v
I was on the respirator for 3 weeks in Pediatric ICU. After they removed me from ICU, I was on the floor for a week and then they released me from the hospital. Upon my release, the doctors told me that I would have SOME scarring in my lungs from the staph pneumonia, but that it wouldn't be too bad. They said that by the same time next year, I should be recovered enough to do all the things that I had done before I got sick. (I.e. cheerleading, swim team, etc.) And that my life would go back to normal. They sent me home on 1 liter of oxygen with instructions to slowly wean myself off of it.
Trusting that they knew what they were doing, I was slowly weaning my oxygen down. I was going for hours during the day without it. But all I could do without it on was just sit still. In addition to that, I was still losing weight even though I was eating like a pig. I had lost down to 85 lbs from 110 lbs, while in the hospital. But, after I got home, I continued to lose weight and got down to as low as 74 lbs. I was a stick. I had no energy. I was pale and looked like a ghost. Concerned my mother talked to the doctors and they said that my weight loss was probably because I was depressed and that wasn't eating enough. So, they sent me to a psychiatrist. I was so weak that I couldn't even walk into his office. My step dad had to carry me. The shrink didn't help. All he told me was to treat my food like it was medicine. Yeah right.
Finally, the pulmonologists at the hospital referred me to Chapel Hill (UNC Hospitals) to visit specialists about my "eating disorder". I went down there that summer in June or July. While i was there, they did a chest x-ray. The doctors were shocked by what they saw. They said my lungs looked like swiss cheese from all the damage to them. Then one day, the transplant surgeon came into my room and looked me in the eye and told me, "With lungs like yours, you won't live longer than 2 years without a transplant." I was horrified. The doctors at Chapel Hill told me that the reason why I kept losing so much weight was not because I wasn't eating enough. It was because my lungs were so damaged that I was using up all my calories just trying to breathe! I was actually doing my body more damage by going without the oxygen. My family and I were in shock. They put me on continuous oxygen at 2 liters at rest and 4 liters with activity. They started the evaluation process and I was listed that summer.
I waited for over 3 and half years and went through 1 "no-go" (or "dry-run" as some of you call them) while waiting. I have a rare blood type (B +). During this time I went to physical therapy/pulmonary rehab 3 or 4 days a week. I had my teacher bring my work from school to my house. During those 3 and 1/2 years, my lung capacity actually got a little better due to the pulmonary rehab. By the time i was 16, I was able to go out and get around and hang out with my friends. I still had to use my oxygen 24 hours a day, but by that time I was used to it. I decided I wanted to go back to school for as many classes as I could handle. But, I also knew that if I got called for a transplant, I would have to relocate down to Chapel Hill for 3 or 4 months after transplant to do rehab. And that would cause me to miss class and I wouldn't graduate on time. So, we discussed this with the transplant team and they told me that I was healthy enough that I could go "inactive" on the list until after I graduated. It was very important to me to go back to school and be with my friends and just try to be as normal a teenager as I could. So, that is what I did.
After HS, I decided that I wanted to go to college. After meeting with the transplant team again, they actually told me that I was TOO healthy for a transplant right then. And, that I could stay inactive on the list until my lungs got worse or that I was getting closer to needing one. So, I went to college and graduated in Dec. of 2003. I've remained "inactive" on the list for the past 12 years.
But, recently I've been having problems with my CO2 level staying high, especially at night when I sleep. My pulmonologist recently told me that she felt like I was getting close to having to be reactivated on the list. Before I knew it, I was being scheduled for a re-evaluation; since it had been 15 years since I had my first one. I'm pretty convinced that when the evaluation is over, they are going to reactivate me on the list.
Right now, I have mixed feelings about the whole thing. I found the Transplant Buddies forum and thought that it would be a cool idea to talk to some other people who have been and/or are in my shoes.
Regalo di Vita (Gift of Life)
February 19, 2008
Today is the 3-year anniversary of Natasha's lung transplant and, as such, she asked that I send the following retrospective journal entry. As far as an update of her health, she is still in the hospital with fevers/infection, but made a real turn-around yesterday. The following excerpt will explain why, since her transplant, snow has become a healing sign for her. Well, yesterday when we awoke the sun was shining and the sky was gorgeous, vibrant, blue. Then, in the blink of an eye the winds blew-in the clouds, the sky turned grey, and it began to snow so hard that it was practically impossible to see one's hand in front of one's face! It snowed like that for about 20 minutes until the sun broke through the clouds and turned the sky vibrant blue once again. That's when Natasha sat-up in her bed and said, "I think I'm turning a corner!" after which we created the "pink lungs at the end of the rainbow" mandala.
"Mom was in the kitchen of our apartment making spaghetti sauce when the call came through. Saturday, Feb. 19, 2005 at 9:00 am. I stumbled out of bed in complete awe. This was the day that I had been waiting for. After a few seconds of shock I collected myself and got into the shower. During this time I experienced such a rush of feelings. Mainly scared and excited at the same time.
We left our apartment within 30 minutes and headed to the hospital. It was a very cold day with heavy winds. Everything that was going to be happening didn't hit me until I sat down in the car. As we drove I prayed aloud the prayer to St. Jude, patron saint of impossible tasks. I asked him to guide me through a safe and successful surgery. I also prayed for the soul of my donor and thanked her for providing me with a new life. A life where I could breathe with ease and enjoy doing all of the things that I love. As I prayed tears streamed down my face and it was then that I realized this was reality. The most beautiful snow that I had ever seen started to fall from the sky and carried us like a blanket to the hospital. I truly felt that this was a sign, telling me that this was my time to transform into a new being. This new being would no longer be chained down by the burdens of tugging for breath and fighting for life. I would be released and lifted, rid of suffocation.
I arrived in pre-op and was prepped for surgery. During this time phone calls were made to loved ones. The words on the other end of the phone served as my guiding strength and inspiration. Almost like my shield to protect me during battle. Knowing how much hope and faith everyone had for me allowed me to fight harder than ever. I remember an old friend telling me that in order to have a successful transplant you must be mentally prepared. Her words were very wise and true. Lastly, before I was wheeled-down to surgery, they took all the jewelry that I was wearing and put it in a patient belonging bag. I remember taking off my CF bracelet that was given to me by my best friend just before I had left for St. Louis. I read the words on the bracelet “Just Breathe" one last time. Then it was finally show-time.
I hugged and kissed my mom and sister and told them how much I love them. It was very hard for me to see how scared they both were. Within minutes I was put from the stretcher onto the operating table. As I stared up at the tiles on the ceiling of the OR my mind filled with flashing snapshots...glimpses of my childhood - blowing out birthday candles, decorating the Christmas tree, picking up sea shells on the beach, family dinners, making snow angels; moments of hardship - hospital admissions, oxygen cannulas; times of glory - dancing across stages, listening to the sounds of my tapping feet, special moments shared in Times Square; and ideas of grandeur for my future - visions of stability and balance, ability to keep up, dancing without struggle...A mask was put on my face and a medicine was given to sedate me. I made the sign of the cross and the rest was out of my hands. I had no control over my destiny at this point. My life was in the hands of God and medical experts. During my surgery angels watched over me and guided the hands of my surgeons. Eight hours later I was reborn. I had received the gift of life. A second chance to visit the world, this time with a beautiful clear set of fresh lungs.
Once I was in the ICU they began slowly weening me off the ventilator. This was a difficult process for me. It was hard for me to understand that I was really going to breathe on my own so shortly after a lung transplant. Then it was time to extebate me. As they pulled the tube out of my mouth I remember gagging and choking followed by the most painful cough of my life. But the breath that I was able to take-in just before coughing was so incredibly amazing. I was breathing all on my own and was able to inhale and exhale with deep, healthy breaths. This to me was just astounding. At that very moment, I recalled for the first time what it felt like to breathe easy, to breathe strong.
The recovery process was long and painful but always full of hope. Each day I felt a little better and grew a little stronger. I was able to see visions of what my future could hold. Each day I amazed myself with the progress that came forth. I was doing it. I survived. And what seemed impossible before now became quite simple."
I am Rachel Nates,28, and I live in Viera , Florida with my husband, Brian, and my long-haired Chihuahua , Hurley. I've had breathing problems for the last 2 years or more. It started with shortness of breath, and I just thought I was out of shape. I started going to doctors, and they thought it was just anxiety. They prescribed me an inhaler and some other medications to help. It didn't help. I had shortness of breath upon exertion... and it was all the time. I knew this wasn't anxiety. I convinced my doctors that further testing needed to be done. After “passing” a stress test (even though I couldn’t complete it) and doing a pulmonary function test that diagnosed me with “mild asthma”, I didn’t think my symptoms were being taken seriously.
I was referred to a Pulmonologist. They did a walk test on me to find that my oxygen saturation was 77%. The doctor freaked out and ordered an emergency CT scan. He thought I might have a blood clot, so they would just check me in to the hospital over night and put me on some blood thinners and I would be good as new! Not the case.
After the CT scan, I went back up to the doctor's office (it was at the hospital). The moment after that changed my life forever. He called me into his office where he and the other doctor was looking at my results. The other doctor told me that I had pulmonary fibrosis and needed a lung transplant. I laughed. You're kidding, right? No. Not kidding.
My face turned white and I almost fell over. The nurse grabbed me and put me in a chair as shock set in... I started shaking... My mom and I both started to cry. Everything after that was kind of a whirl-wind. They put me in a wheel chair and my mom got my car to drive me home. Brian, my husband, was working and I called him and told him to meet us at home because we needed to talk. I couldn't tell him over the phone. They had oxygen delivered to my house and I remember the neighbors coming over going “what is going on?”.
The doctors gave me a referral to Shands to get a second opinion and get on the lung transplant list. At Shands, I was actually diagnosed with an extremely rare lung disease called LAM (lymphangioleiomyomatosis) by Dr. Harman, the Chief of Pulmonology. She said it was 'textbook LAM'. The medical student that was working under her even asked her if she could keep a copy of my CT scan, because she had never seen it in real life before. Basically, LAM is a disease that affects women. It causes cysts to grown in and around your airways, making breathing extremely difficult. It’s similar to emphysema, but it’s both obstructive and restrictive– the worst of both worlds.
She wanted me to do an experimental study, but I just wasn't ready to make that decision. Since LAM is so rare, there is very little known about the disease. There is no known treatment or cure. She said she wanted me to do the study and then if that didn't work then we needed to talk about a lung transplant. I kept getting worse - and I finally had a mental break-down. I needed to make a decision.
I asked for a 'sign'. I wasn't sure what to do. The next day, I was shopping with my mom. I had my oxygen on and a gentleman approached me about it. Turns out, he had a lung transplant because of pulmonary fibrosis 12 years ago at Shands. His brother had one 3 years ago for the same thing. He and his wife were able to put me at ease about the whole thing. He was on the transplant list for 2 months and his brother was on it for 5 months. We exchanged numbers and I will be in touch with him & his wife during the whole process. That was the sign I needed. On June 3, 2008 I was put on the lung transplant list at Shands.
I'm just ready to be healthy again. I'm at the point where I'm on oxygen 24/7and it is extremely difficult to go out... so I stay at home most of the time. I get REALLY out of breath when I exert myself. It takes me several minutes to catch my breath again... all from walking across the room. I'm just doing everything I can to get ready for the surgery so I can have a quick recovery and can get back to my life. I owe it to my family and friends... and especially my loving husband who has stood by me through all of this. I couldn't do it without him.
But, seriously, this is the best thing that has ever happened to me. I was so miserable before my diagnosis, life just wasn't right... and now I have a whole new lease on life and the things that used to bother me just don't anymore. I love my husband in ways I never thought I could... I'm genuinely happy and excited now about getting my new lungs. I feel like a totally different person than I was a year ago. I have also been able to meet some really amazing people because of this. I've made some friends for life. I have been able to see God bless my life in ways I never thought I could. I truly have something to live for now.
'When God takes something from your grasp, he's not punishing you. He's merely opening your hands to receive something better. The Will of God will not take you where the Grace of God will not protect you.'
I have also found someone who is an extremely talented filmmaker who has already started filming my story and my journey for a documentary. I hope that it will help others who are facing transplant and also be a story of inspiration and hope for others. I am also starting to write a book for transplant patients… a collaboration of talking to others about all the stuff you wish someone had told you and detailed instructions and check lists on how to be prepared for transplant – before and after. It is my goal to get it in the hands of every person facing transplant so that it can be a tool to help make this difficult part of their lives a little bit easier.
I also plan on dedicating my new life and my new lungs to helping create awareness for organ donation and to raise money for research for LAM. I have always wanted to do something like this with my life, but never found a charity that touched my heart enough for me to do it… but I guess the charity found me.
I continue to have a positive outlook and just want to share my story to help others. I think that is my purpose for going through all of this. If I can have someone tell me that I’ve been an inspiration to them, then that makes it all worth it.
Please visit my website to follow my journey: www.rachelnates.com.
As I blew out my birthday candles at my thirty-sixth birthday party, I made a special prayer that I could stay alive for one more year. It was not too long before that time that I'd been told that I had less than a year to live, because I was dying from Cystic Fibrosis. In the event that I needed emergency assistance, I decided to leave my apartment door unlocked. This plan of action saved my life. On January 18, 1996, my respiratory therapist found me semi-coherent, on the bathroom floor, with my canula detached from my face. Sandra had come to give me a breathing treatment. I was taken by ambulance to the nearest hospital. When I became conscious, I looked over at my parents in the ICU and felt a great appreciation that they were called to meet me at the hospital as I lived alone.
A few evenings later, I asked the ICU nurse to help me get out of bed. I wanted to walk in place for twenty minutes, because I knew how important it was for me to get some exercise. I wore an oxygen tube in my nose as I proceeded to slowly march in place. While I held the nurses hand, I said aloud, "I will never give up! I want to live! I want to live!" It made me feel so alive, unlike the way I looked. I felt a little shaky and my skin tone was a bluish color. After I said my famous marching words, I looked over my shoulder to see my parents' reaction. Their emotional reaction will remain indelibly ingrained in my memory. My determination was so alive. I was going to fight this battle!
Later this evening, I felt very peaceful along with feeling a sense of urgency. Although I was physically alone, I felt a great love, I felt surrounded by our heavenly father. As I started to pray, I felt every fiber of my being absorbed by Him. I said, "Dear God, please, if there is one night that I need and want new lungs, it is tonight." I always prayed every night, but I never expressed such a desperate, urgent plea for help.
Hours after midnight, the lights flicked on. There was my doctor who exclaimed, "Risa, you are going to Chicago tonight! They have lungs for you!" At first, I thought I was dreaming. All of my favorite therapists and nurses helped me to get ready to leave the hospital. I was living in Florida, so my family and I flew by air ambulance to Loyola University Medical Center.
When I reached the operating room, I said in a very upbeat voice, "Bye mom and dad, I will see you both tomorrow." When I met my surgeon I said, "Take me, I’m all yours." I learned that I was on the respirator for an additional eight hours after the operation. When I woke up from surgery, my first request was for ice, because my throat was very dry. I then asked if I could listen with a stethoscope to hear my clear sounding new lungs. Later, I asked for a mirror so I could see my lips and fingernails, which were pink. The entire transplant team was very impressed with my enthusiasm.
A nurse in the ICU called my parents in to visit me. When I saw my parents I was not yet able to move much. My mother had tears in her eyes as she exclaimed, "Today just happens to be my birthday, this is the best birthday present I ever received!" The next day, my father asked me, "How does it feel to breathe?" I replied. "I feel like I have superwoman lungs!" I smiled, took a breath, and laughed. Within a mere ten days, I was discharged from the hospital. It was necessary for me to live in Chicago for three months to facilitate post-transplant observation.
My father philosophized, "You have to appreciate where you have been in order to appreciate where you are going." These words of wisdom helped me cope emotionally with some minor setbacks. I did experience some rejection and a minor infection. I have been rejection free for five and a half years and have had no serious signs of infection.
To write a letter of appreciation to my donor family was paramount to me. I have written four letters in the past six years. I wrote about the gratitude and respect that I have for the family. They had the foresight to see life for another human being. They gave me the chance to breathe freely for the first time in my life. I always pray for them. I have not received any replies so far. I had an intuitive feeling about his race and his birthday. I found this to be a true discovery by family services from the organ donor program.
After returning to Hollywood, Florida, I contacted several charitable organizations and civic groups to arrange speaking engagements on organ donation. This is my way of giving back to society for the precious gift that was given to me. In 2000, I created www.transplantbuddies.org. Many patients, both pre- and post-transplant, enjoy helping one another on a daily basis. There are topics for almost all facets of transplantation. I also participate at Jackson Memorial Hospital in their mentoring program.
I enjoy fast walking, aerobics and weight training. Deep-breathing exercises are part of my routine during resting periods. I believe in holistic therapies and find a great benefit from them. I met a wonderful man named Cary shortly after my transplant; I am very serious about him.
Facing a near-death experience has taught me a great deal of appreciation for life, for my family, friends and doctors who have stood by my side through good and bad times alike. Regardless of what I might experience in the future, I feel as though I can handle anything. However long I shall live will be god's plan. As one can imagine, this life changing experience has enlightened my spirit in many ways.
In 2004, I was diagnosed with chronic rejection. I lived with a great lung capacity for eight years. I decided to go back to Loyola Medical Center in Chicago for a treatment called Photopheresis. After three months, I decided the treatment was not helping and decided to head back to my home in Florida.
My transplant team at Jackson Memorial Hospital re-transplanted me in July of 2005. Fortunately, my health improved day by day once I left the hospital. I had a difficult operation due to the fact I had my lungs for almost ten years. I had to have a tracheostomy which at first seemed difficult. I received Campath induction therapy with my second transplant and I believe that was a big help especially for re-transplantation as I no longer have to take steroids.
I never dreamed that I would do as well as I did especially for a second transplant. I will be 49 years old in October of 08. Twelve days before my second transplant, Cary and I were married. We are living life to the fullest. God Bless my Donor and his Family.
Hi, my name is Ryan. I would like to
thank everyone who gave me the gift of life.
I’m a 19-year-old teenager with CF. On
the 16th of May, 2002, I received a double lung
transplant. I would like to say that if it weren’t for
the donor, and all the great staff that looked after me,
I wouldn’t be here today thanking all for their hard
My transplant was a very hard and long
experience, as I was in ITU for three weeks; my body
just wouldn’t respond to all the medication and
ventilation that it was given there. There were a lot of
mishaps along the way, but the staff never gave up hope.
And after three weeks I was put on to the transplant
unit, where the staff were all very helpful in my slow
On the unit I was able to make friends
with a lot of people who had been through similar
transplants. I was in the unit until the 28th of June,
when I was fit to go home. I'm getting on really well,
but still have to visit the transplant clinic once a
fortnight, but that’s a small price to pay after all
that I’ve been through. There are a lot of things that I
need to do to keep me doing as well as I am. There has
been a lot of time that I have felt really good and
didn’t think that I needed to do some of the things that
I have to follow everyday. And I soon found out that
it’s all done to make us well. I have had a couple of
mild rejections, but have been lucky that the treatments
have worked for me.
After all the illness I had to start
with, life now can become normal. (Well, what I think is
normal, as I don’t really know what normal is. With CF
you never have a normal life.) It’s great to be able to
breathe with out the help of any machines helping you.
It’s now three months in to my new life and I’ve still
got a long way to go. But I’m sure that things will get
Once again I would like to thank the
donor that has given me the life that I have now and
hope that they will know they have given more to my
family than anyone could ever know. I lost my sister 4
years ago and know how hard it is to go through what
your family will be going through at this time. Thank
you very much from the bottom of our
My Gift from God and the Sacrifice of a Loving Family by Scott Fouts
On February 27, 2007, I received a double lung transplant at Vanderbilt University Medical Center in Nashville, TN. I would like to thank the family of my donor, wherever they are and say I hope to meet them some day.
This is my story of what led up to the transplant and how I have progressed since that day. Please allow me to back up about 11 years where the transplant story begins. Due to Cystic Fibrosis and the effects this disease has had on my lungs, I was beginning to show signs of progression. My lung function was down to 19%, even though I was working as Department Manager 50 - 60 hours per week. I went to a local Pulmonologist who said there was nothing he could do for me and referred me to Vanderbilt for a double lung transplant evaluation.
In December 1996, I underwent the evaluation process. In January 1997, Vanderbilt was ready to have a meeting with me and my support team, consisting of any friends and family members who would be there to support and assist me after the transplant. We went to the meeting where we learned more about the transplant process and the statistics of survivability.
I wasn’t sure I was ready for a transplant. As a born-again Christian, I know what my future holds when I leave this world and why would I want to postpone that? Vanderbilt gave me one month to make a decision. Through many prayers, I decided it was not time for a transplant. It was the most difficult decision I had ever been forced to make.
The transplant team told us that from their experience, once someone's lung function got as low as mine was, I would only have about a 6 months left to live. I would be very fortunate to even receive a transplant that quickly. I still stuck to my faith and said it wasn't time for the transplant. I worked full-time for another 8 months.
In 1999, I met Sandy. The more time I spent with her, the more I liked her. We have such similar likes and dislikes. You would think we were poured out of the same mold. We became best friends and it got to the point that where one of us was, the other was always nearby. We became engaged and then were married on March 11, 2000. Sandy and I remain best friends to this day, and our love continues to grow.
Off and on through our relationship, we had talked about children. One side affect of Cystic Fibrosis is male sterility. The only way I could father my own children would be through artificial insemination. That was out of the question. The next best option was adoption. I had always wanted children, but was afraid of being a good enough dad and could I handle it?
One day in 2005, I saw a flyer for a Christian Foster/Adoption Agency. I wrote down the contact number and went home and talked it over with Sandy. (Note: About this same time, Timmy was born.)
We decided to become foster parents. We had to go through every conceivable test you could imagine. Background checks, fingerprints, home inspections, medical tests; you name it. Well, the FBI lost our fingerprint cards. It was almost a year later before we heard anything from them. I had given up because my breathing had begun to get worse and I just accepted it as God's will that we were not going to be parents.
Timmy had been a patient at the Children’s Hospital where Sandy works, for most of his 14 month life. He spent more time in the hospital, due to a major heart problem, than he spent at home. When he was at home, he was not cared for properly. The State finally took custody of him because he showed signs of serious neglect and malnutrition. Timmy came to live with us after he was released from the hospital. We were prepared for the day he would have to be reunited with his biological parents, but we were so head over heals in love with this child that I dreaded the day we would have to give him up. We took him at 14 months old (at a 6 month level) and with God's help and through many types of therapies, got him to and beyond his age level. I could go on and on about him, but this is a transplant page. To make it short, in July of 2006, Timmy became available for adoption. Of course we wanted to make him a permanent part of our family. Because of this and the success of my marriage, how could I come to any other decision but to be listed for a lung transplant now that I truly felt the time was nearing. I felt like if God could match a child so perfectly to our family, He could easily match a pair of lungs to me.
When I started discussing transplant options with my doctors at Vanderbilt, they were thrilled I had decided to go with it. I was evaluated in December of 2006. The average wait time for transplant is 6 to 18 months. I seriously doubt that I had 6 months left to live, much less likely 18 months. On top of that, my blood type is AB+. That could either be a very good thing or a very bad thing. I was # 1 on the list with that blood type. Thankfully, I got the call a month and a half after being listed. If you think about it, the first time I was evaluated in 1996, the lungs I’m breathing with now were only 5 years old, and would not have fit.
On Tuesday, February 27, 2007, Sandy and I took her car to a transmission shop because it had developed quite a serious problem. She followed me to the shop in my car while I drove hers. That was the first time I had driven in several months. On our way home around 2:00 p.m. my cell phone rang. I answered the call and the transplant nurse asked if I'd like to have a beautiful pair of 15 year old lungs? I was almost speechless. I told her we would be there as quickly as possible. The surgery was finished in the early morning hours of the 28th.
I got out of the hospital one day short of two weeks after the transplant surgery. I had to go to clinic once or twice a week for the next few months, and I had pulmonary rehabilitation five days a week. Before the transplant, I was on 5 to 6 liters of oxygen 24/7. It was all I could do to stand long enough to brush my teeth. I would force myself to walk on the treadmill a few minutes two or three times a week. I had no energy whatsoever. I probably walked less than 500 feet in a day for who knows how long. By 2-1/2 months after transplant, I was able to walk 1 mile in 20 minutes. Three weeks after returning home, I had completely disassembled our 1966 Mustang and now (1 year after transplant) I’m almost finished with the complete restoration.
It is hard to believe I can do so much on no oxygen and no more inhalers. My oxygen level is consistently 96-98% on room air. My FEV1 is now between 90 - 112%. Before transplant, it was 0.5 (12%) and now it is 3.75-4.10.
Timmy’s adoption was finalized in October, 2007. He is now our pride and joy and one of the main reasons I decided to go the transplant route. Since the transplant, we have been to the beach, the Smokey Mountains, a few car shows, and pretty much anything else we want to do. Today, Sandy and I are celebrating our 8th anniversary. I’m very sure that would not have been possible without my new lungs. If you want to see all the updates I've posted, you can check them out at: http://hometown.aol.com/neverslowdown/transplant_updates.html
42M/CF a life - Become a Donor!
The doctors can do the transplant. God does the healing.
I was diagnosed with Cystic Fibrosis in
1970 at the age of two. First, I want to thank the
family that was willing to donate their loved one’s
organs. After three years and letters sent, I still
don’t know who my donor was, but God knows that I am
very, very grateful.
Just after 3:00 pm on Friday, September
19, 2003, I was taking another nap (it’s amazing how
much you sleep when you’re having trouble breathing)
when I got the call that would change my life entirely.
I received a call from the transplant nurse, Sharon
Osborne at UC San Diego. I got to UCSD Hospital from Los
Angeles at 5:30 p.m. If you’re wondering how I got there
so fast, I had arranged for a private plane to fly me
down from Whiteman Airport. It is just amazing what
people will do for free when they want to help someone.
I will never forget when I kissed my wife and daughter
goodbye before driving to the airport.
I was in pre-op by 7:30 pm and was
hooked up with two IV’s and getting prepped for the
operation. My wife had to drive down with my daughter
Allie, and a good friend; she arrived at the hospital at
9:30 pm. I found out a couple of months later that my
daughter, who was 6 years old at the time, said to my
wife as I walked out the door, “I like daddy the way he
is." I get choked up every time I think of that. My wife
and I were always very careful to be positive around my
daughter when it came to my upcoming double lung
transplant. However, kids are truly so smart, smarter
then we will ever know. I can recall always telling my
daughter, when daddy gets his new lungs we will be able
to ride bikes and swim together. Oh, I will never forget
the first time I swam after my transplant. I felt like
Mark Spitz at the 1972 Olympics.
My wife and I prayed and read the bible
from 9:30 pm until I was finally wheeled into the
operating room at 10:30 pm. I remember the surgeon, Dr
Kragen, asking me right before they pushed me into the
OR “are you ready?" I answered, “Yes. Are
I don’t remember anything that, just a
couple of minutes in the OR with the anesthesiologist.
Amazingly, I woke up only two hours after getting out of
the OR at 9:30 am. I found out later that it only took a
couple of hours to take out my lungs but there was a
five-hour pause before my new lungs
arrived. (At 5:30 am my family and friends who were in
the waiting room, actually had watched the cooler come
into the hospital headed for my OR).
When I woke up in the post-op ICU unit
it was 11:30 am. I felt great. I remember giving my
family and friends a thumbs-up, and hearing the nurse
telling me everything went well and just relax. I was
still on the ventilator and oxygen. After only two hours
I was doing so well that the doctors took me off the
ventilator. In fact, an hour later I was off of oxygen
and had an O2 level of 100% for the first time in my
A week after being out of the hospital,
the greatest thing that happened to me: I went to
breakfast with my family and parents. We ate at a
restaurant right on the Pacific Ocean in San Diego.
After we ate, I took a walk with my daughter and wife.
In Allie’s entire life, we had never walked on the beach
until that morning. I only live about 20 miles from the
beach here in Southern California, but avoided the beach
like the plague. Well, after walking with Allie for a
few minutes my eyes started to tear up. I remember Allie
asking what was wrong. I was too choked up to speak, so
my wife explained that daddy is just so happy, he’s
crying. And, you need to understand I’m not a crier. My
dad was great, but he was in the military and taught me
to be a man. In fact, I never saw my dad cry, and he
didn’t pass away until I was 20 years old, so crying
just doesn’t come naturally to me.
After only 3 months I was back on the
ice getting in shape to play hockey. my lungs were
great, but my legs were so weak. when you can hardly
walk for a year you don’t realize how weak your muscles
get. It took months to get my legs back in hockey
condition, but I was so grateful to be alive and back on
Five months after my operation I biked
the Los Angeles Marathon with one of my best friends,
David Greene. That summer, 10 months after the
transplant, I participated in the United States
Transplant Olympics in Minnesota. I highly recommend
that people get involved with the yearly transplant
games. You don’t have to be athletic, just participating
and being around these people is incredible and will
lift your spirits whether you have been touched by
transplantation or not.
I met some great people while
participating for the Southern California Team. I ended
up winning one gold and two bronze medals in track and
field events. Then won a silver medal playing volleyball
in the group round.
A few days after the Transplant
Olympics, I was playing ice hockey, practicing with
professional players from the Los Angeles Kings for the
first time in my life. To say this was a dream come true
may be the biggest understatement of my life.
I have never had rejection, Thank God.
And now enjoy playing with my daughter and being there
for my wife. I actually enjoy cleaning the house and
taking out the garbage (“What’s wrong with me?"), just
because I can. I now play in 3 hockey leagues and can
bench press 230 pounds…
I now have a steady good job as an
accountant, and for the first time in my life, feel I
will see the money from my 401K plan sometime in the far
My name is Steve Ferkau. I was diagnosed with cystic fibrosis on the day of my 13th birthday in 1973. I had been sick all of my life, but now we knew what the illness was – we knew the cause, and the prognosis. At that time, life expectancy of a CF patient was 14.
I remember living with my illness growing up. Though I was fairly active, I was also never as good as the other kids – I could never keep up with them. Not even the girls, which can be pretty humiliating as a young boy! Yet, I also felt incredible support from the kids around me… Most of them knew what I had – they understood the obstacles I faced.
I met my princess, Laura, in my mid 20s. Ironically, by that time I had come to terms with the idea that falling in love wasn’t in the cards for me – I had a lot of trouble with the thought of developing a relationship with another person, then leaving them. And, I knew that watching me go downhill and die of CF would not be an easy thing. As I fell in love with Laura, I had a number of difficult discussions with myself. I guess I decided that I deserved to be in love with someone. I’m glad I did, Laura has made all of my struggles worthwhile, and all of my joys more joyous.
An incredible doctor took care of me for 28 years – he guided me through so many obstacles… When we decided I should be listed for lungs, he told me that this would be the most difficult year of my life. Neither of us imagined I would wait almost three years.
I struggled for 40 years with cystic fibrosis. During most of those years I didn’t even know I was struggling – that was just how I knew life to be. The last several years waiting for transplant I knew I was struggling.
Sometimes I wondered or imagined how life might be without CF – what it might be like to breathe “normally". I was not-at-all prepared for this. Breathing as I do now is better than my wildest imaginations!
I had four “false alarms" while I waited. Four times, four families, going through four devastating moments in their lives – reached out and tried to save my life. On April 8, 2000, the phone rang a fifth time. A family in Iowa was experiencing the most devastating moment in their lives. But, in the months before, their precious daughter had told them how strongly she felt about organ donation.
I didn’t know that Iowa family when I was transplanted – I learned about their precious daughter a few years later. I learned her name was Kari and she was 17 when she passed. I met her family and several friends a few years after that… They are a truly beautiful family.
My passion now lies in telling people about organ donation; and mostly, telling people about Kari.
I get to speak quite often about organ donation. I get to tell people about Kari – I get to show them her beautiful smile. I get to tell them about the life she’s given me.
I get to help donor families understand what they’ve done for someone. And, how we recipients feel about them and the loved one they lost. Speaking to donor families means the most to me – I want them to see how I feel about Kari and her family. I want them to understand there are people out in the world whose lives they’ve saved, who feel the same about them.
I get to help medical professionals and organ donation and transplant professionals see the result of their efforts. I get to tell them how grateful I am for what they do, and how grateful so many of us are. I’ve had so many of them touch my life over the years. Kari saved my life when I needed her most, but so many of these people carried me to her door, and helped carry her to me…
I get to help people considering organ donation understand exactly what donation does for others. And, show them that donors and donor families are heroes in the eyes of their recipients.
I get to give people waiting for an organ hope – hope that others will hear our message and someday save lives, including theirs… Hope that others will want to be someone’s hero when they leave this beautiful planet.
But most of all, I get to tell people about Kari – I get to help her smile and her beautiful spirit live on in so many hearts and minds.
I waited three years for Kari to come into my life. I know so many precious people waiting for lungs and other organs. When I tell people about Kari, I tell them how she felt and what she’s done for me. If enough people understand the goodness in organ donation like Kari did, maybe the pain and fear involved in waiting and wondering won’t be as great, or as long.
I participate at Transplant Buddies – and I also contribute to a blog about organ donation called Revive Hope. A precious girl named Jenn is one of my fellow contributors on our Revive Hope blog. Jenn was one of Kari’s friends who I met, and who I now adore. Meeting her and learning more about Kari and about Jenn has been one of the more wonderful things in my life. Jenn has developed an incredible passion for telling people about organ donation, and about me and Kari.
Jenn once told me that she thought the greatest fear Kari’s Mom has is that people will forget about her daughter. That will not happen on my watch – not while I’m breathing.
I have a website I use as a tribute to Kari at www.ClimbingForKari.org
Our Revive Hope blog is at www.ReviveHope.com
My name is Susy García. I received my
bilateral lung transplant on November 23, 1999 due to
IPF. I was always a very active and healthy person until
I started having difficulty breathing. At first I
thought I was “just a little out of shape", teaching
school, and a full time student as well, I thought I
just needed to get back on my bike like I used too.
Every opportunity I had, that is just
what I would do, ride my bike thinking things would get
better. The more I would ride, the harder and harder it
was for me. I decided to go to the doctor and after many
tests and biopsy. I was diagnosed with IPF and
eventually would need a transplant. A transplant me? I
was devastated, not having any major health issues. That
just could not be right, so I went to National Jewish
hospital in Denver Colorado for a second opinion. In the
back of my mind I still thought maybe I could ski one
more time since I’m already in Colorado!
Once in the hospital in Colorado I had
many test done to me. After a week the doctor came to
give me my results. He looked at me very teary eyed,
hugged me and said, “My little Susy, (there was nothing
little about me after nine months of very high doses of
prednisone) you are very very sick, go back to Miami and
put yourself on a transplant list ASAP". I was crushed.
Forget skiing, biking or anything of the sort.
Back in Miami, the doctors evaluated my
for a transplant, and was listed. After waiting eleven
months, dependant n oxygen I was called and received my
double lung transplant at Jackson Memorial Hospital. I
was in the hospital thirteen days. When I was discharged
I thought life begins now.
Since I’ve had my transplant I go
skiing the highest mountain Vail has, scuba dive the
deepest ocean I can possibly dive, and returned to
biking on a daily basis. After my transplant I’ve
adopted the idea just live large and enjoy everyday like
it’s the last.
A Caregiver’s Random Thoughts
While talking with some of my coworkers
about my wife’s pre- and post-transplant experiences,
some have commented that it must also be hard on me to
go through this with her. Thinking about that for a
while, I have honestly answered that it was
not. I will readily admit that it was
often times frustrating, sometimes tiring, and at other
times depressing but never hard. I say this since I have
always tried to keep matters in the proper perspective.
My wife has lived with her respiratory problems since
childhood and has adapted herself to deal with whatever
comes along. Housekeeping does not come easy to someone
who becomes exhausted easily. I’ll do my best on the
weekends to try and do as many house chores that I can.
When I’m feeling a little pooped out, I’ll say something
like “just give me a minute to catch my breath and I’ll
be alright". What that woman wouldn’t give to be able to
say that and get some of her strength back! Sorry, but
that was only a dream.
Then there are the times when getting
ready for bed and she says, “Sorry honey, not tonight,
I’m tired". That I realize is not being turned down but
knowing that she is physically exhausted and that’s just
from trying to make it through another day. I can get
over feeling tired but I know that she can’t always do
that with a little nap. She didn’t know for her first 52
years that all of her problems were actually related to
CF. At first she was told it was asthma, later on it’s
bronchitis, then it’s chronic bronchitis, and then it’s
this or that and finally someone says it’s
Well then, that explains everything,
right? Nope! It wasn’t until a very observant pulmonary
specialist hears a sniffle and asks if she had sinus
problems and if she was ever tested for CF. Yes to the
problems but no to the testing and now it all makes
sense and maybe she can get a lung transplant. Hard is
going through life and not knowing what is wrong. There
is nothing at all that I do that is hard compared to
this. I only wished that there was more that I could do
Frustration and worry are just part of
the package, do we have enough liquid oxygen in the
portable Helios for a few hours out of the house, do we
have enough spare e-tanks for just-in-case, can I pull
off the road fast enough to switch tanks before her
headache starts, you all know about little things like
that. How about the frustration of getting those dry run
calls only to hear a little while later to not even
bother to leave the house since it wasn’t a good donor,
worse yet to get as far as the pre-op holding room and
have a NO-GO at the last minute. You say to yourself
that it must be for the best but you question how many
times that you’ve gotten “the call" and wonder how many
more before you almost give up hope. As her caregiver
and loving support, I’ll be there with a shoulder for
her to cry on or the arm to offer my strength, always
holding back a tear knowing how disappointed she must be
feeling. Somehow we find a way to keep a positive
attitude believing that her time will come, that maybe
the organs were not good or that they were not the best
ones for her.
Her seventh and last call came at the
beginning of this year and somehow everyone that we
spoke to knew that this was the one. Were they all just
being supportive or did they have an insight that we
weren’t aware of? Maybe I should ask for the winning
Lotto numbers. They were right, this was the one and by
the grace of God, she survived the ten hours of surgery
and in a matter of a little more than three weeks, she
was sent home to enjoy her new lungs and a new life. I
am elated to say that so far she is coming along very
well, good and healthy lungs showing up clear on the
x-ray. What a miraculous way to start the new year!
Looking back at all of the little things that we have
gone through, seeing her for the first time without the
use of an oxygen hose more than made it worth while. We
tend to more appreciate the things that don’t come easy
and that we have to fight for.
It is obvious that I do believe in
miracles but not necessarily the kinds that we’ve heard
about in the past. You must have a belief in some Divine
Creator to get through this and to witness things that
you cannot explain. My personal belief is that He works
his miracles in all of the little things that we either
don’t see or just take for granted. Never mind the
parting of the Red Sea, I am amazed at how all of the
heavy rush hour traffic suddenly parts so that I can
maneuver over to the faster left HOV lanes on the
highway when we are running late for our appointment.
Have you ever looked up and said a little "Thank You" as
you are the last one to make a turn before your light
turns red? If you can look at little things like this as
mini-miracles, your travels can become a little more
calming. After that, the miracles start getting better.
God calls home another angel in order to present a donor
for you. Your transplant surgeon and his team is having
one of their best days, organs arrive on time and look
healthy and the surgery is a success. Isn’t modern
medicine one of His greatest miracles? I have never
asked God to cure my wife but I have prayed for the
strength and patience to make it to our goal of
transplant. I have also thanked Him many times for the
wonderful doctors and nurses who have helped us along
the way. Last but not least, I have thanked Him for our
donor and prayed for consolation for the donor’s
My name is Kim. A little over 11.5 years ago I received a heart/double lung transplant. Yup, a new pumper and a set of new blowers. Why did I need my chest cavity cut open?
I was born 28 years ago (1/3/80). I was born a lot earlier then planned. Because of this, I ended up with a lot of health complications but mainly in my heart and lungs region. While it was obvious that my lungs were underdeveloped it didn't even occur to my doctors for a couple of years that there might be something wrong with my heart. Remember: this is early 1980s thinking.
When I was 2.5 years old my doctors thought I'd be doing somewhat better being on oxygen. After doing a cardiac catheterization on me it was discovered that I had holes in my heart--holes that were unrepairable. I was diagnosed with Eisenmenger's Syndrome and PPH (Primary Pulmonary Hypertension). Once that was discovered my doctors "tip-toed" around this new kind of surgery, an operation that might be able to fix or even "replace" the organs of mine that were in bad shape. An operation called a transplant.
When I was almost 5 years old my parents decided to move the 4 of us (I now had a baby sister who was born HEALTHY) from Boston, MA to Tampa, FL to see if the warmer climate might help me. It worked. I ended up having a normal childhood. Some of you might be reading this thinking "yeah right" but it's true.
I grew up in a great neighborhood with lots of kids my age. I could go down the street, across the street or even a block or two and my parents didn't have to worry about me. All my mom would say was "call me when they're [my friends parents] getting sick and tired of you so I can come and pick you up" LOL! I was an average/above average student in school. I was active in Girl Scout and in my church. I remember family road-trip vacations up to Boston during the summer. A lot of the kids I became friends with I'm still friends with and it's been over 20 years!
In June of 1994, I went to my cardiologist for my yearly check-up. It was the first day of summer vacation and I was antsy just to go in, get checked and go on with my summer. Fate had other plans. My usual doctor wasn't available so we had a fill-in. This doctor took one look at the results of my echo cardiogram and said the words that would shake me to my very core: I've just gone the results of Kim's echo we need to get moving with the transplant. TRANS-WHAT?!
Growing up my parents didn't know how to tell me the truth (who could?) but they NEVER expected me to find out in such a blunt way. My dad was in the room with me so I was hoping he'd tell me that this was a joke or something. Unfortunately, the look on his said it all: "I'm sorry, Kim, but I didn't want you to find out this way." To add insult to injury, the doctor MUST'VE caught the expression on my face and instead of "backtracking" and taking a more sensitive route in telling us about transplant centers he just kept right on going.
In December of 1994 my family and I (which now consisted of a second sister who was also a preemie but was spared of health complications) went up to St. Louis, MO for an evaluation at their transplant center: St. Louis Children's Hospital. At first, the doctors thought that they could do some repair on my heart and just give me lungs. After a week's worth of tests (including a whole day with a psychologist) it was deemed that I would need a heart and a new lung (only listed for 1 because of my scoliosis). Since I was the first patient they'd ever had with this type of illness I became their "guinea pig". After that first visit they said, "come back in 6 months"...June of 1995 "come back in 6 months"....December of 1995 "we need to speed things up a bit."
The five of us moved to St. Louis in April of 1996 to wait for the call to arrive. Almost exactly two months later, on June 14th, it happened. Luckily, the first call was the real thing and not a false alarm. Since my donor was so much younger than me, I was able to get her heart and both lungs. Amazingly enough, the operation and recovery went very smoothly. So smooth that it scared my doctors!
From March of 2006-February of 2007 I experienced my first EVER bout of rejection--in my lungs. An experience I hope (and pray) that I NEVER have to go through again.
Has my transplant experience been perfect? Nope. But is my life better because of it? HELL YEAH! I wouldn't have lived to graduate high school and college (albeit, an AS degree but still). I wouldn't have lived to see my baby sister graduate high school. My now 10 and 9 year old cousins would've heard stories about their 'late cousin Kim.' Instead, I get to hang out with them. I've been able to compete in the U.S. Transplant Games. At the 2006 Games (yes, when I was still in rejection) I somehow won a bronze medal--GO ME! I look forward to competing in the 2008 U.S. Transplant Games in Pittsburgh.
I am so thankful that my still un-known donor family said YES in their moment of tragedy and I'm proud that I've been able to give these heart and lungs such a good home. :-)
I was born with the congenital heart conditions: tricuspid atresia, atrial and ventricular septal defects, and pulmonary valve stenosis. My first heart surgery, a Blalock-Taussig shunt, was a palliative procedure at almost one year of age. At age three, a modified Fontan, open-heart surgery was performed, followed by leg surgery to retrieve a catheter tip lost in my bloodstream. At age six, another open-heart surgery was done to close an atrial septal defect, which could not be repaired using a catheter and an umbrella device. Later, scar tissue from respirator tube insertions caused breathing problems and was alleviated with laser throat surgery.
My final Fontan surgery was in 1997. The surgery was unexpectedly difficult in trying to get my heart pumping again, maintaining my blood pressure and controlling severe arrhythmias. My heart was swollen too much to close my chest and that had to be done the next day. Then I had a mild stroke resulting in left side hemiparesis. Peripheral neuropathy also became a problem. A pacemaker was implanted to help keep my heart from beating too slowly, but never helped with my tachycardia episodes.
A few years later, my knees became swollen and pain shot through my arms and legs. One of my medications, procainamide, induced lupus symptoms and messed up my nervous system. Next came abdominal pain from gallstones. A laparoscopic cholecystectomy surgery was performed to remove my gall bladder. From that point on I developed intractable ascites. Soon after, I contracted peritonitis. Hernias became a problem and my navel had to be removed to repair one of them. As of 05/23/08, I have undergone 149 paracentesis procedures to drain the fluid from my abdomen.
In November, 2003, I learned my liver was in failure, secondary to the Fontan circuitry problems with my heart. I needed a new heart and a new liver to survive. I was placed on the Tx waiting list at the end of November, 2006 and received my heart and liver transplants on February 1, 2007. One week after the transplants, I coded and had to be opened up again to repair leaking vessels to my heart. My kidneys went out and I received dialysis for a month until they started working again. After 49 days, I was released and went home. So far, my biopsies have been negative. I still deal with intermittent abdominal and joint pain and go in for paracentesis procedures to drain out the ascites fluid, which I hope will finally stop soon.
Hey there everyone! My name is Patti and someone told me about this site in one of my groups on Myspace. I have Cystic Fibrosis and was diagnosed at the age of 6 months. I have been in and out of hospitals all of my life for lung infections and bowel obstructions. I have had 22 surgeries (including minor ones) and have plenty of scars on my abdomen. I was told in November 2004 that I was going to have to find a transplants site that was willing to do double lung and liver transplants at the same time. Because of the CF, my lungs were deteriorating and I had cirrhosis of the liver (diagnosed at 14 years old). At the time that I was told that I needed the transplants, I had only 40% of my lungs left.
I found the Cleveland Clinic and they wanted to see me before they would determine if they would do a surgery that they had never done before. Sure they have transplanted lungs and transplanted livers, but they had never done all three together before. I had my first appointment with them in June 2005 and then another in July 2005 and then everything was brought to a halt. On August 1, 2005 I found out that I was pregnant (9 weeks along)! It was a shock because we didn't think that I could get pregnant. I was told by almost all of my doctors to terminate the pregnancy because it would hold the transplants off too long and it would probably destroy my lungs even more. Well, when they couldn't guarantee that I could get pregnant again, my mind was made up that I would go ahead with the pregnancy. My little boy was born 7 weeks early on January 10, 2006 and was a tiny 3lbs 5oz but he was perfect. He was in the hospital for a month and came home on Valentine's Day 2006!! We had also found out in the month that he was in the hospital that his right eye did not develop all the way and he was blind in that eye and had a "keyhole" pupil in the other eye. He has a "glass" eye in the right eye and he wears glasses for the vision in his left eye.
In March 2006, I started my work-ups for my transplants again and the doctors told me that having a baby showed how strong I really was. My lung function was down to about 30%. I kept getting infections and getting worse. I was placed on the lung and liver transplant lists on August 24, 2006. I was hospitalized for infections and coughing up blood on September 28, 2006 and was in until December 1st. The doctors decided to release me so that I could spend the holidays and my son's first birthday with family. Of course if the organs came within that time, I would have to go back to the clinic....6 hours away from home.
I spent the holidays and my son’s birthday at home and then was admitted to the hospital again on January 22, 2007 for coughing up about a liter of blood. I had two surgeries to stop the bleeding at my hospital close to home and then was transferred to the clinic on January 27. The doctors talked to me about taking me off of the liver transplant list because they thought that the lungs would come faster and that's what I needed the most or else I wasn't going to make it....we would wait for the liver and I would have another transplant in the future. My lung function was down to 16%. My doctor came into my room on January 30 and told me that we had a perfect match....I was getting the transplants that night. Oh she said....we have the lungs AND the liver! I made history at the Cleveland Clinic that night....I'm their first ever double lung and liver transplant all together. I think there had only been about 19 in the US before me.
I recovered quickly and went home after only 4 1/2 weeks. I got sick again in May with really bad stomach pains and found that there was an infection in my colon that medications did not take care of and had to have emergency surgery to have it removed or again, I would not make it. The surgery for that was June 14, 2007 and I have had a colostomy bag since. It really sucks but things could have ended up worse.
So, here I am almost a year after my transplants and I feel great!! We have had a couple of other bumps in the road (rejection twice) but it was nothing major. I am so glad that I chose to go through with the transplants because now I am here for my husband and son and am living a great new life!!
I was born September 18, 1976 with alpha1 antitrypsin deficiency. My mother noticed that there was something wrong with me, I wouldn’t eat or absorb milk and I had failure to thrive. They at first didn’t know what was wrong with me, so my mother had me tested. Tests soon showed that I had alpha 1 antitrypsin deficiency which is a rare lung disorder. Its a genetic disorder caused by defective production of alpha 1-antitrypsin (A1AT), leading to decreased A1AT activity in the blood and lungs, and deposition of excessive abnormal A1AT protein in liver cells. There are several forms and degrees of deficiency. Severe A1A deficiency causes emphysema and/or COPD in adult life in nearly all people with the condition, as well as various liver diseases in a minority of children and adults, and occasionally more unusual problems. It is treated by avoidance of damaging inhalants, by intravenous infusions of the A1AT protein, by transplantation of the liver or lungs, and by a variety of other measures, but it usually produces some degree of disability and reduced life expectancy. The disorder itself is usually found only in the Caucasian race and its genetic, meaning the mother and father both have to be carriers. After my mother found out I had this illness, she had all of my brothers and sisters tested, (I was the last of 4) and it was soon showed to be that my older brother also had the disorder, but for some reason or another, which I don’t think is known among doctors, he did not have liver problems. After I was diagnosed as an infant, I then spent the first 10 years of my life in and out of CHLA in Los Angeles for GI bleeds. I had severe Ascites of the Liver and my belly was bigger then my head as a child. Because of the emphysema I was tired all the time and my mother had a hard time taking me to high elevations because I couldn’t breathe. I would throw up blood and have bloody stools. My liver was failing. At age 3 I had 3 ft of my small intestine removed, (In which for reasons I’m not clear of). I then slipped into a coma and they told my mother I wouldn’t make it to see my 4th birthday (I think these are the ages). In the late 1970's or early 1980's, when liver transplantation was new, doctor’s offered my mother to transplant me, but because back then the only rejection medication they were using was prednisone, my mother declined because she would see the children pumped full of this steroid with big cheeks and other severe side effects and my mother didn’t want to put me through that. (She probably was given information that I was stable, but I’m not sure). In 1985, researches finally came out with the drug Cyclosporine, which finally increased the success of transplantation. I was soon worked up for a new liver and placed on the UCLA Transplantation list. During the summer of 1986, Channel 7 news, (ABC News) did a cover story about me and how I was on the waiting list for a new organ. In December, I think it was like 1 week before Christmas, my mother's beeper rang. They had a liver for me from Texas. (I don’t have details I don’t remember). I was flown by helicopter from my town in La Crescenta,
Ca to UCLA Medical Center. 12 hrs later I was transplanted. Because transplantation was still new, my transplant operation took a total of 12 hrs. It was so long that the back of my heels eroded from lack of circulation, causing ulcers. When my transplant was over, I was stable for a little bit, but then I declined again. I went into not only liver failure, but kidney failure as well. I lost I think it was 1/4 to 1/2 of my kidney function, again, I’m not sure, ask my mom. I was very, very jaundice (yellow). And without another liver, I would die. The Lord then gave me another liver. This time the liver was from Minnesota. 3 weeks later, I was wheeled into the hospital room again. I remember the surgeon, Dr. Busitil, (who is now a famous surgeon), told me that they were going to transplant me again, and I told him that I was ready. I was more than willing to go back into the operating room. I then got the second transplant. This time it took, I was given a third chance at life. I slowly got better and got released. 1 month later I rejected. I rejected 2 more times after that once in 1989, and the second time in 2000. I was the one of the first group of 100 transplant recipients to receive the drug cyclosporine. In 1996, I gave birth to my little girl. Despite the fact that I had to take anti-rejection meds throughout my whole pregnancy, my daughter came out completely healthy. In 2005, I was diagnosed with thyroid cancer. I had a complete thyroidectomy with radiation and have been cancer free ever since. I’m a born again Christian and I hope to serve the Lord by giving hope to those who are either waiting for a transplant or have just received a transplant. To let them know that there’s hope and that Jesus died on the cross to give us not only a new organ but to give us life. I owe my many chances of life to God, because he is the one that moved the hearts of those parents to donate the organs to those who are dying. The gift of life is precious and not to be taken for granted. I hope I have brought hope and encouragement to anybody who reads this testimony.
I would like to thank my husband, for
with out his wisdom, love, and support, I would not be
alive today; my family, for their knowledge, hope, and
loving support; and anyone who reads my story, for
allowing me to let you know there is always hope.
I was diagnosed with Hepatitis-C in
1993. I didn't admit it to anyone, even to myself: I had
no outward signs and felt great. It was my ‘secret’. In
1995, at age 45, I met my husband and life mate. We went
back to his house to talk; I noticed on his coffee table
a book: on the cover it said Hep-C. I asked him if he
had Hepatitis, and he said, ‘Yes’. He was the first one
I ever admitted it to.
Shortly afterward we were married. Soon
after our marriage I started feeling bad, so my husband
took me to his doctor. after a battery of tests, I found
out that I had cirrhosis of the liver. My husband had
done interferon and it helped him, his virus is still
undetectable to this day. I did the treatment for a year
with no side effects, but the liver was in end stage by
this time and I had been in and out of hospital many
times. My doctor referred me to UCLA, where I meet the
doctor. that would save my life. He told me the liver
was so far gone, that the only thing at this point that
we could do was get me a new liver.
You face a lot of demons when you know
you are dying, so I made my peace with God and left it
in His hands. I was in hospital several times once I was
on the waiting list, and didn't think I would make it
very long. I started a real downhill slide because I
really didn't think I would get a liver. ‘I am no one
special, why should they give me a liver and not someone
else?’ that was how I felt. Then my husband said
something to me that blew me away, it was very simple.
He said, "Adrienne, God didn't bring you this far to
drop you on your fanny now!" And it was really the
It was 10:00 PM when we got the call.
My husband and I looked like Keystone Cops, running
around and around in circles, bumping in to each other,
so excited that we finally got the call. I had only
waited six months and I was shocked when the call
finally came. The only thing I seemed to be afraid of
was the fact I didn't want to die on the table without
being able to say good-bye to my husband, family, and
friends. But again that simple little thing my husband
had said to me stuck, so bravely ahead I went.
The operation a success! I was making
my own bed at hospital after 4 days! Yes, my life is
much slower these days, but it is so good to be alive,
My Hep-C is back, but I live one day at time and that is
all we can do. So please have the hope, faith, and
courage to go on, there is always hope! God bless all of
you. If I can help in anyway let me know.
Update: As I mentioned earlier, my
Hep-C came back with a vengeance; I had my first major
rejection in April of 2002. After doing a year of
peg-riba, and the virus being undetectable, I really
don't know—and the doctors haven't a clue—if this may
have caused the rejection. It just seems kind of strange
to be so many years post-transplant, do treatment, and
then go into rejection.
While I was in the hospital for the
rejection, the transplant surgeon came in to say hello
and to tell me the news that I needed another
transplant. I guess it really didn't sink in at first.
Then a few hours later it hit me, ‘you mean I have to do
this all over again?’
So I had all my evaluation tests again
while I was in, they got the rejection controlled so now
I'm just in chronic rejection since that time. I was
finally re-listed for second transplant in October 2002,
and I’m still waiting and waiting and waiting.
I have my good days and bad, but all in
all, it’s not so bad the second time knowing what to
expect and also have so much knowledge now. The first
transplant I didn't even own a computer, so I was alone,
except for my family.
I am so grateful to so many through the
years and now for the opportunity to help others in need
who have just had or who are waiting for transplant.
Giving back is the most important thing in my life.
Other then my family it is what I do, and who I am.
In April of 2006 I became seriously ill and was forced to leave my job as a Teacher's Assistant. After being hospitalized several times, I received the ultimate gift; a lifesaving liver transplant. Prior to the surgery, a social worker at the hospital asked what I would do if I had this second chance at life. I told her that I would dance at my son's wedding, that I would bring my daughter to her first rock concert and would happily drive my younger son to his baseball practices without complaint. Although I would never have dreamed it possible, I also wanted to go back to school. I recall not wanting to be an observer in my life anymore; that I wanted to live my life. On October 31st, 2006, I received the phone call that changed my life.
Thanks to one selfless, giving act of a family I have never met, my new birthday is November 1st, the National Day of Rebirth. I don't know if anyone, with the exception of another transplant, can understand the feelings I have today about life. Every single day I wake up and think about the blessing I have been given. I don't take anything for granted anymore. I feel like I'm wasting precious time when I sleep past 7 a.m. Suddenly, I am aware that I have a higher purpose in this life. I need to give back to the world, for this gift that I've been given. I began walking every day and watched the world go from cold winter to a spring with everything (and me) coming to life again. I walked my first 10k race for education and many more 5k's with my friend Chris, a cancer survivor. I was incredibly proud to help plan and dance at my son's wedding on May 26th. I took my daughter to see FERGIE at the House of Blues in June and it was G.L.A.M.O.R.O.U.S! I watched my son Ryan pitch at a playoff game this past July. Many times throughout his high school and college career, I've told my oldest son that he better watch out because I was going to go to college with him. In August, I was proud to see him get his Masters Degree. Over the years I've worked hard to help put my husband and son through college and raised three children, but my turn to go back to school never came. My husband has been through it all with me and has been a great source of strength. We celebrated our 25th wedding anniversary last March, and my gift was a college catalog. After a 29 year interruption from school, I enrolled in the Adult Human Services program at our community college. Last September I began volunteering for Donate Life and Gift of Hope; two organizations that helped make it possible for me to receive a transplant. I feel my purpose while in school is to help raise awareness in the community and on campus that nearly 100,000 people in the U.S. are currently waiting for life-saving transplants. I want to spread the word that transplantation works and I'm living proof! Under the guidance of Gift of Hope Organ and Tissue Network and Donate Life Illinois, I have run several donor registration drives on campus, and even formed a chapter of a Students for Organ Donation at College of DuPage. My long term goal is to become an Advocate for patients waiting for transplant. Life can go on through another human being, as a result of this process. What a tremendous impact this has had in my life. Transplantation is the ultimate form of charity, and I would like to do more to inspire others to consider this completely selfless giving of themselves, by pledging to be an organ donor.
It was about 8 1/2 weeks ago that I had my liver transplant. What a roller coaster ride this has been. I had been sick for about 5 years when I finally went to the Mayo Clinic here in Jacksonville, Fl. I had previously visited Shands in Gainesville but was not happy with them so my family insisted that I try Mayo. It was the best decision I ever made.
After about a year of being treated and tested at the Mayo Clinic for all of the things they we pre-transplant people have to go through, my MELD score hit 15 and I was finally listed. I was on the list for 5 weeks, to the day, when I got THE CALL. Needless to say my emotions went wild, scared to death of the surgery and the problems afterward and at the same time happy because I was finally going to have a chance at a new life. We (my husband, my daughter, her boyfriend and I) got to the hospital about 5:00 P.M. During the check in procedure about 10 other family members showed up so I was indeed surrounded by LOVE!
I was in holding till about 2:30 A.M. My surgery began at 3:15 and lasted about 6 hours. I woke up in ICU and don't remember anything that happened during the next 48 hours.
On a side note, I was told later that Dr. Tanner, my surgeon, went to the waiting room to talk to my family right before my operation was to begin. My crazy brother spoke up and said, “Dr., I want to know one thing, have you ever done a transplant before?” Without missing a beat, Dr. Tanner said, “No, but I stayed in a Holiday Inn Express last night!” What a way to break the tension. Needless to say he is a GREAT doctor as we all know now and he has a great bedside manner.
After a couple of days I finally came to (somewhat) and was amazed at all the IVs and tubes in me. My new liver was having a hard time waking up too, so I was in ICU for 6 days. At one point, Dr. Tanner told my family that it was possible that they might have to re-transplant me. I didn't even know this till after I got home. On the fifth day my numbers started improving so on the sixth day I was moved to a regular room. My new liver was functioning just perfectly.
Praise God, I had so many people praying for me and God answered their prayers! I can't say the hospital stay was something I would want to repeat, but I had some of the best nurses in the whole world. Most of them were so kind and compassionate and they made the stay a lot easier. One of my favorites was a guy named Clay. He would make me laugh by talking like Forest Gump. He was really good at it too.
I have not had any problems with my new liver. I do have a hernia that they tried to repair during the transplant surgery, but it didn't work. It is now about the size of a small watermelon on the left side of my stomach. Dr. Tanner predicted that it will be October before they can do surgery on it because he wants me to heal on the inside first. In the meantime, I look like a 55 year old pregnant woman. I will be so glad when they finally repair it because besides being very uncomfortable, it is not a pretty sight at all. On the bright side, I know things could be worse.
I can't praise the doctors and the staff at the Mayo Clinic enough. To me they are tops in their field and I would highly recommend Mayo to anyone. I was even lucky enough to be transplanted in their new hospital which had only been open about 3 weeks. It is so beautiful, it looks more like a hotel than a hospital and all the rooms are private which is very nice.
Hope I didn't ramble on too long, but I wanted to tell some of my story. I love everyone here at transplant buddies. You have all been such a great help and an inspiration to me in these last few months.
God Bless and to everyone waiting for a transplant, hang in there. I know that the waiting is the worst part but your time will come and you too will be writing your success story here.
Thank you Dad! Hello Everyone, I would love to share my story about my liver transplant with everyone! I have never written about my transplant before. A church in Mn. requested my story about a year ago but a lot was going on at that time and I never did write it. Maybe they will be next.
My story began in 2002. I had accepted a job at a new retirement community as an assistant property manager/marketing manger. Starting a new company is a big task, so this job required 60 hours a week right from the start. So that’s what I did, I kept on working. Now I started with this company at the end of 1999, so I had been working 50, 60 hours a week for 3yrs. I was getting tired, but I had always worked many hours so this was not new for me. I thought old age was approaching. Also, my dad had Parkinson’s disease so I had started to help him a little bit with things.
A few months went by and I was getting worse. I went by my Dad’s house one day and he told me I looked exhausted. He pleaded with me to slow down. I believed I just needed some rest and maybe some good vitamins. So that is what I did, I rested and bought some good vitamins. The vitamins didn't work, as a matter of fact I felt terrible. I started to itch. Badly!!! So I thought ok., which one of the little energy pills did this? I started eliminating pills one by one. This took 3 weeks. I was getting very sick.
I now knew I had to go to the doctor, but before I made an appointment my son invited me on a shopping spree. Well what woman would pass that up? My son had not seen me for a while because he was a district manager for a large company, and, like mom, worked 60 plus hours a week. We talked on the phone, but my voice sounded ok. So we started out on our shopping spree on a very dark rainy day. My son was driving and busy telling me about an important meeting he had coming up so I don't think he noticed much about my appearance, although he did say I looked tired, and wondered if I had been dieting. I assured him I was fine but a little tired.
We went shopping at one of his favorite malls about two hours from our home. As he drove I could hardly stay awake. He knew that was not like me to act that way, and again wanted to know if I was ok. I again said I was so we started shopping. He went on his way trying on suits etc., while I tried to find a place to sit down. A sales lady noticed and asked me if I felt all right. I told her I didn't and asked her if she could assist my son so it would speed things up and we could leave. I swore her to be silent as I didn't want to worry my son. She helped, kept quiet and we were back on the road.
Half way home my son wanted to stop and eat. That is when he noticed how bad I looked. Sitting across the table he could see how jaundice I was. He looked startled and said, "Mother you are yellow and your eyes are the color of butterscotch." He told me he thought something was terribly wrong. I got home and called my doctor and the office manager said I would have to wait 2 weeks, I told her how jaundice I was but she still insisted I would have to wait. Finally I saw the doctor, he looked at me and said "Go to the hospital, I will meet you there." He beat me to the hospital.
When I got there he ordered every blood test you could imagine-stat. I knew I was bad. He checked for liver Cancer, Lupus, Hep, a,b,c and other tests. They all came back negative. He then called in specialists in several fields of medicine. They next did a liver biopsy. It took a couple of days for results even with people working around the clock. They told me my bile ducts were damaged but not scarred. So they ordered medicine to thin the bile so it would flow through the ducts. It worked. Everything seemed fine. They told me to come back in a month (after a 9 day stay in the hosp.)
I was doing well. My doctor did tell me that if I had not gotten to him when I did I would have died in about 3 days. The bile was backing up in my system and poisoning me. So I went in for check ups - monthly, then every 3 months, 6 months etc. and finally 1 year. My doctor said I should live another 35 years easy and without a transplant, but come back every year. I did and everything seemed fine.
My dad was now going into the final stages of Parkinson’s. My stepmother was in a near fatal car accident. She had broken bones everywhere. She now would be in the hospital for several months. I started taking total care of my dad; it broke my heart to watch him decline. It was a privilege to care for him but clearly the most painful experience of my life. He was my rock, my best friend, my daddy. And every day a little more of him left me. The stress was off the charts!
I started to decline too. My doctors warned me to slow down, and put my dad in a nursing home. I told them no and swore them to their vow of silence, not to tell my family. I wanted to see my dad through this. Reluctantly they said ok. I cut my work to 36 hours a week and continued to take care of dad. He now could never be alone. My brother tried to help but lived out of town and really could not help. Other family members were old and had their own health problems. My son wore himself out trying to help and he had a family of his own to care for. But I made dad a promise that I would not put him in a nursing home and one way or another I wasn't.
My boss suggested that dad come and live at our retirement community. What a blessing! She also said I could take care of him while I worked. This was great. But it ended all too soon. Three months after I moved him in he had to leave because he could not walk any longer. We were an independent retirement community so he could no longer stay. I found another retirement community that would accept dad so I moved him there. I now had to sell his home. I was lucky it sold in 3 weeks.
By now I was having several bleeds, 1 a month, from varices. I had 7 blood transfusions and banding done. My doctors were helpful to get me in and out of the hospital fast, in no more than 2 days. But with every transfusion I got weaker. I was loosing ground fast. And now Dad’s safe home was no longer safe. I got another move out notice. Dad was getting confused. Parkinson’s had taken everything from dad and now it was after his mind. He thought he could walk. So he tried. He was in an out of the emergency room from falling. It would be at one of these visits that doctors would decide to tell dad that I would die very soon if I tried to take care of him. Dad then put himself in a nursing home.
So I now was moving fast to get on the transplant list. It took 3 months of testing to see if I was strong enough to have the surgery, I passed! I had quit my job and now stayed in bed or watched TV. Blood tests were drawn almost weekly. My ammonia levels were so high all I wanted to do was sleep. My doctor worked diligently trying to get me on the national transplant list, but my meld score was not high enough yet. He finally got me on a midwest list but that was the best he could do.
At my next visit my doctor said I had only about 8 weeks left; at this time I did the second hardest thing in my life - prepare dad for my death. I went to visit him and gently started to talk about what a good life I had lived, I told dad that if I didn't beat this thing then I would go to a better place. He said, "I want you to fight with everything you have left, but if you don't make it I will be right behind you." I then reminded him God is in control and he would not take him until he was ready for him. Dad knew that and agreed with me, his faith was even stronger. That would be our last visit in person. We talked on the phone every day. Dad would pray for me over the phone, sometimes I would hear his weak voice crack; he tried so hard to be strong for both of us. He prayed for me every minute of every day. He up held me before the Lord and turned me over to him.
My call would come about 1 month later. It was on a Sunday (the Lords day) that I got my call at 10:00am. The transplant nurse said, "Debbie we have a liver for you." "Be here in 2 hours." I quickly called dad to give him the good news. He cried so hard but these were tears of joy. He told me he wanted to go with me but he knew he was not able – his exact words, "Debbie I will not be with you physically but I will be with you in the spirit." He was! I did not need any medicine to relax before surgery I was completely calm and ready to go.
My surgery was a complete success. It was over in three hours and my doctors said the liver was a custom fit. Remember those antigens? My donor had the same match, I didn't need any blood.
Many miracles happened that day. I believe because dad prayed the entire time, he just never stopped taking me before God. I owe my miracle to dad, and by the way he told me later it was the biggest and best miracle he had ever seen. He told me he had never had so much faith. For those of you who may be wondering about dad, he got his biggest promotion yet - he went home to be with the God he prayed to every day so faithfully a few months after my transplant. But he did live to see me fully recovered. I was with dad when he died. He died in my family’s arms as we sang his favorite songs to him. You can probably guess what he told us before he died. "I will not be with you physically but I will be with you in the spirit." And he is!
"Thank You Dad!" "I Love You!" ~ Deb ~
Erin Brenner loves to paint, swim and ride her bike. She loves frogs and worms and squeals with delight at the sight of them. She also can’t wait to be a doctor when she grows up – big ambitions for such a little girl. That is especially true since Erin had such a fragile start in life.
Erin started vomiting the day she was born. Her pediatrician thought she was either lactose intolerant or had reflux disorder. After routine blood work at the hospital, the doctors told her parents that Erin was in kidney failure. At the hospital, Erin was diagnosed with a rare disease affecting her liver and kidneys, which meant she would need a transplant for both. After taking her home and giving her lots of parental care and nutritious food, Erin’s kidneys began to stabilize and it became apparent that if she received a liver transplant quickly enough, she would not need a kidney transplant.
"We knew we had to wait until a liver transplant became available and that it would save her life, but when the day came to hand her over to the surgeons to perform the transplant, I was terrified," Irene said. "Letting go of my little baby girl was the hardest thing I ever had to do, but after the transplant surgery, seeing her healthy, I knew we had won. We could beat anything."
Now a fiery six-year-old with curly red hair and dancing brown eyes, Erin enjoys everything she does with zest and enthusiasm. She plays soccer and softball for the town league and is involved in girl scouts, gymnastics and karate. One of her crowning achievements was medaling in the track competition at the 2006 U.S. Transplant Games last summer.
"Erin showed everyone that transplantation works," Irene said. "I hope that in the future she can show people on the organ waiting list there will be a day when they will live, love and laugh too. I hope her smile and determination is a big thank you for all the people involved in organ donation."
Erin and her family look forward to the 2008 U.S. Transplant Games next summer, but they never lose sight of the donor family’s sacrifice – the gift that not only saved Erin’s life, but changed her entire family. "Erin’s illness has grounded us and humbled us in many ways. Her donor’s family has shown us what miracles are and how precious life is," Irene said. "Participating at these Games is great for our entire family and has taught our other two children how special life is and to be proud, not only of their sister’s achievements, but of their own."
I sometimes wonder how I survived that
period. In November 1993 my Mom died after a long and
hard battle with cancer. Dad was supposed to die first
as he was 10 years older and had been sicker, but that's
not how things worked out.
Much of November and December was spent
trying to straighten things out and arrange for care for
my Dad. And 1994 was on the horizon. In 1984 I was told
I had non-A, non-B hepatitis and underwent every
treatment on the books for almost 10 years. During the
1994 holiday season came the news that I needed a liver
transplant, as I had only about 18 months to live. Happy
I can say enough for the medical
treatment I received, both locally and at Johns-Hopkins.
But I had other non-medical questions: How do you handle
all the meds? How long before I get back to "normal",
etc. A call to the transplant coordinator located
someone nearby who had had a liver transplant just a
year before. What a blessing that Jim and Nancy turned
out to be. Jim was straightforward and very, very
honest. Nancy had learned all she could about the whole
thing over the Net. And they were just a phone call
away—or even closer when needed.
How long did I have? How long a
I'm a big guy—6 foot, 4 inches tall and
285 pounds. While I sometimes thought this was a
disadvantage, it turned out to be a blessing. The first
call from Hopkins came in June—only 6 months on the
list. I had to be there by 2 a.m. So began the first
journey. The stay was short. The liver was not
acceptable. That's just the way things happen—I
Of course the waiting was not
uneventful. I learned a new word—encephalopathy. Boy,
did I learn. I went out to get in the care one day to go
to the doctors and stood by the car door for a LONG time
with keys in hand not knowing what to do. Luckily a
neighbor across the street saw what was going on and got
me back in the house. (It’s very important that your
family and neighbors know what is going on. Needing a
transplant is nothing to be ashamed of.) Of course when
I got back in the house and into bed, I knocked the
phone off the hook. My wife had called the doctor's
office from work to make sure I had gotten there. When
told that I had not, she called neighbors to have them
check on me. And I didn't remember a thing.
The worst bout with the big "E", as it
came to be known in our house, occurred a few weeks
later. To make a long and painful story short, I ended
up in the hospital. (I was taken to the "psych" floor
under armed guard). Before my wife could get home from
the hospital I was wide awake, knew where I was, and
asked the nurse to call my wife. When the nurse reached
my wife, her reply was, "What's he done now?" Luckily an
adjustment in meds kept this from happening again.
The second call came in September. Be
at the hospital before 2 a.m. After a wait of over 12
hours they said, "Go home. The liver is full of fat
cells which die when transplanted and we will not accept
it." This was a lot harder on my wife than it appeared
to be on me.
October 5th was my uncle's birthday. At
10:15 that night, Cindy—the transplant coordinator on
duty—called and told me that this was lucky number 3. I
told her that I wasn't sure I was coming to the hospital
again for another disappointment. My wife told her that
I would be there by 2 a.m. (Do these things ever happen
during the day?)
So, with my good friend John as driver
and my sister-in-law, Norma, as moral support, we began
another journey to Baltimore. When we arrived in
Emergency the nurse said that she was not sure where to
start. I suggested that she called the doctors to let
them know I was there. She said that I must have been
there before. Right!
About 7:30 the surgeon, Dr. Maley, came
to the room where I was waiting (the same room the very
first liver transplant at Hopkins had been in—a good
sign or what?) and wheeled me to the operating prep area
much to the delight and surprise of the nurses.
About 8:30 the technician said to count
backward from 100. What comes after 97?
About 11:30 that evening my wife saw me
after recovery. She said that I talked to her. Guess I
did not say anything wrong—we are still married.
After 12 days, I went home. I was so
glad to be out of the hospital. They were wrecking my
pea fields! Those on prednisone will understand that.
Boy does that med do something to you.
So, it's been 8 years in October 2002.
Life is good. No, it's great! The major problems
post-surgery were adjusting the meds. What's been going
on these last 8 years? Well, I've spent a lot of time
mentoring pre-transplant patients. I also volunteer at
the local hospital and at Hospice.
On my anniversary every year I write a
letter to my donor family. I've not heard from them.
Maybe someday. Seven folks now have a new chance thanks
to their kindness.
What can I say to those who are
waiting? You are not alone. There is someone who really
does understand what you are going through. Reach out
and ask for a mentor. He or she can help make the
journey a lot easier for you.
God bless donor families, those waiting
and their families, those lucky ones who got a new
chance, and the medical
My name is Gracie and I was married for
6 years to the most wonderful man in the world. His name
was Ed and he and I met because of our love for music
(we were both musicians and sang/played guitar together
in a duo). Like I said, we had a wonderful life
together, but it didn’t last long enough.
He was diagnosed with a rare liver
disease in 1993 (Primary Sclerosing Cholangitis), which
had no known cause or cure. The only thing that would
save him was a liver transplant. He was placed on the
waiting list in 1998 at New England Medical Center in
Boston, MA. We waited for 3 long years, as Ed got sicker
and sicker. Finally, one September night in 2001 we got
the call we had waited for. I was thrilled: I thought it
was the answer to our prayers.
Unfortunately, it wasn't. Ed suffered
many complications (and he was a reasonably young man of
51). He fought hard and valiantly, through eight
surgeries. The doctors tried their best to make things
work. He finally lost his struggle on Oct. 22, 2001 and
my life will never be the same.
I felt that there wasn't enough
information given to pre-transplant patients and their
families. I went back and read through all of the
paperwork they gave us and I only found short little
blurbs about how people can have "complications" and
For the six weeks that Ed was in the
ICU, I felt so lost. I saw people coming and going,
getting their transplants and going home. We were still
there. We didn't know what to expect. Now I'm still
lost, and although the hospital staff was wonderful,
there weren't any resources for people like me. There
was no one to talk to.
I still feel that transplantation is a
wonderful thing. The person who (and his family) donated
his liver to Ed was extraordinary human being and I will
always be grateful for the chance this gave us. I just
thought there was a need for a place to go for those of
us who are lost and still in shock over the
disappointments from all of this. And maybe people who
are hoping and praying for their loved ones who are
still trying to recover, or patients who grieve over the
loss of a transplanted organ can also find this place
one to ask questions or just to talk.
Where do I begin?
In 1972, I had a hysterectomy at the
age of 25. During my surgery, I was given a blood
transfusion, which at that time; the blood was not
really tested for deadly disease, as it is today. Even
though I was a picture of health, I knew something was
wrong but I didn't know what. I was so tired and sick
all the time. I relied on my doctors’ word, and thought
I had Chronic Fatigue Syndrome. (Sometimes a doctor’s
excuse for your illness, when they can't figure out what
is wrong with you). I went from one specialist to
another and many unnecessary surgeries, only to find
out; in 1989 I had hepatitis C, a very debilitating,
Sometimes hepatitis C takes many years
to surface. And by the time most people find out they
have it, it has already damaged the liver. In some cases
it can be treated with Interferon to stop the damage.
And now there is a new treatment (PEG-Interferon), which
recently was FDA approved. But some, who can't be
treated, end up having a liver transplant.
From the time I was diagnosed with
hepatitis C in 1989 until 1996, my liver numbers went up
and my blood platelets went down, still stumped, the
doctors thought I had leukemia. Another round of
specialists, and no one yet knew how to treat me. (I was
still relying on their words).
I was sick for so many years, thinking
I always had the flu. Not understanding what was really
wrong with me. There were many days I would get up
feeling all achy and tired. Just taking a shower wore me
out. I would have to lie down and rest to gain enough
strength to get myself dressed. I had night sweats,
thinking it was ‘change of life’. (Little did I know). I
went through many bouts of depression, because, I felt
so inadequate. (What kind of a wife and mother was I?)
Plus the uncertainty of what was really wrong with
My poor family didn't know what was
wrong with me and had no idea of what to do for me. I
couldn't even partake in some of our family outings
because of feeling so tired and sick. Through all of
this, I had a nervous breakdown in 1993 and was
hospitalized for several weeks. During this time, I grew
"Strong" mentally and I knew, with the grace of God, I
would be able to rise above anything that was handed to
me. But it still was a hard journey! Mentally I was
strong but my body was not corresponding. I continued to
feel sick everyday, and still didn't have an answer to
why I was feeling this way.
I started searching for new answers! I
was compelled to find a doctor that would take this
matter seriously, know what hepatitis C was all about
and what could be done to help me.
I finally found two wonderful doctors,
who knew exactly what was wrong with me, and what needed
to be done. Immediately, I was sent for a liver biopsy,
and was told I had Cirrhosis of the liver. My condition
was bad. (A lot of precious time was wasted, because of
negligence and being misdiagnosed for so many
In February 1997, I became very ill,
and was sent to UPMC Hospital in Pittsburgh, Pa. A very
fine hospital, where I was seen by many wonderful
doctors. They ordered another liver biopsy, 32 tubes of
blood, and many other tests. Finally I was on the right
track, but a little too late! I was told at that time; I
was in the End Stage of liver Disease and needed a liver
transplant. I would be placed on a transplant List
immediately, and that it could take from 1 to 3 years of
waiting. The news of this put me in a state of shock,
This can't be happening to me. My world came
crashing down! Would I have enough time? Would my
husband and I share another year together? Would I, see
my grandchildren grow up? As a mother, every
question went through my head.
I turned to God, knowing he had a
reason for this happening to me, and he did. He helped
me to grow into a very strong Christian and individual
who new I had to fight this or lose the game. My life
became God's, turning it all over to Him, knowing He was
the only one in control. I knew I had to win, because I
had to show others, how the power of prayer works! And
God really tested me; believe me!
During that time of waiting, I grew
sicker and sicker by the day. I developed a tremendous
amount of fluid (ascites) in my legs and abdomen. I had
severe cramps in every muscle and joint. I was nauseated
constantly. And I had intense itching all over my body
(I thought I'd lose my mind!) I became incoherent, and
had to rely solely on my family to take care of me. At
times I lost touch with reality, because of high ammonia
levels in my blood. (A condition that can lead to
hepatic encephalitis, which can lead to a coma)/
Months passed on, and I didn't think I
would make it to the next day, but with the power of God
and my strong faith, I trudged on. I couldn’t, and
wouldn’t, give up!
I was called to Pittsburgh for nine
possible liver transplants, only to find out, that each
one was not a match, or someone more critical than I
needed it. Anxiety took over, but I never gave up and I
continued to pray. I knew God would not forsake me.
On February 19, 1998, my 32nd wedding
anniversary, I was taken to Pittsburgh because I could
not breathe. I was told that the wall around my right
lung was full of fluid and it needed to be drained
immediately. I had 53 liters of fluid drained from that
lung in a period of three weeks. At times I was so weak
and so sick, I could hardly function.
At home, my bedroom became my
sanctuary. I had to be fed, bathed and dressed. My time
was running out. The doctors told me to hang on, that a
liver would come through soon. I held on to every shred
of hope, and remained faithful to my Lord! I would not
My liver numbers continued to rise, as
my skin started to turn yellow; my creatinine and BUN
were at their peak; my RBC and WBC were out of range;
things were beginning to shut down; I grew sicker, and
needed a liver soon! I waited patiently for the phone to
ring or for my beeper to go off. I continued to pray,
and to ask God, "Please let me see a new day!"
Well, on March 28, 1998, (thirteen
months later and the 10th call) I was granted a new
life: I received my miracle gift, a gift that
was given to me unselfishly, from my wonderful donor
family. Even though they were grieving over the loss of
their loved one, they graciously gave me a gift to save
my life. Because of this precious gift, an Angel lives
on through me, and I am daily reminded of this
miraculous gift. A day does not go by that I don't offer
my thankfulness to God and my blessed donor family.
Without this precious gift of life, I would not be here
The saddest part of this transplant for
me is knowing that a young boy had to be taken from his
life in order to save mine. In a story I recently heard,
God says, "it is more gracious to give, than to receive,
and the rewards will be high, for all those who live up
to these words". In this I take great comfort, knowing
that my donor Angel, will be richly rewarded for his
precious gift, which was given to me. And for this I am
The surgery was a success and I was out
of the hospital in fifteen days, with no complications.
I was sent home to live my new life! Who ever
said, "Miracles do not happen"? I am living proof that
if you pray and believe with all your heart, miracles do
happen! My life is truly a miracle
Easter Sunday was the day I was
released from the hospital (what an appropriate day).
When I stepped out of the hospital that glorious sunny
day, I raised my head to the Lord, with a smile on my
face and said, “Thank you, Lord, for this new day and my
I passed my 3-6 month critical time,
with no rejection and no infection. But hepatitis was
another story! Eight months after my transplant in 1998,
I was told that my hepatitis C was back in full swing,
and was advised to go on treatment to help kill the
virus (having a transplant does not get rid of
hepatitis, it still lives on in the blood.)
Pondering over it for a month, (because
of the side effects) I finally decided to give it a
shot! I went on a combination drug treatment of
Interferon and Ribavirin. The Interferon was by a shot
that I gave myself 3 times a week. And the Ribavirin was
in a pill form taken daily. I was told that I might
become sick, with the worst flu-like symptoms, but, if I
could make it through the first 3 months, I would have
the symptoms licked.
Well, with the strong constitution,
that I have I knew that I could conquer those 3 months.
Which I did! I am not saying that the side effects were
not bad, because they were, but I fought it, knowing I
had a chance at beating this hepatitis C. The total
treatment lasted 18 months.
With the Interferon, I had the flu
aches, nausea and I was very tired. (But we go through
that just having hepatitis C, so that was not a big deal
for me.) The Ribavirin was a little bit harder to
endure. First of all, my red blood count dropped down
low, and I became a very tired and short-of-breath. So I
was started on Epogen shots weekly. Then I developed
kidney stones in both kidneys (a side effect that they
found out through me). I had to be hospitalized and had
to have 2 stints put in the Kidneys, for the Kidney
Stones to pass through. They also put me on a drug
called Allopurinol to break up the stones, and keep them
from turning into larger ones.
Ribavirin makes you feel depressed and
in most cases you are put on a mild antidepressant,
which I was able to bypass. I made it through all of the
18 months of treatment, of both the Interferon and
Ribavirin, but don't think I didn't put up a fight Sadly
to say, I didn't clear the virus, but God has his
reasons for that. Still, I am so grateful for my second
chance at life through the beautiful miracle He has
My viral count is still high, but my
liver enzymes remain low and in range, which means that
at this time the hepatitis is not affecting the new
liver, praise God!
This virus is a hard thing to go
through, but new treatments, are on the way! We must
stay strong, support others, and pray that God will give
the doctors the knowledge to find a cure for this
dreadful hepatitis C virus. One month after completing
that grueling treatment, I was able to fulfill a dream
of mine. And that was to compete in the 2000 Transplant
Games. I didn't win a medal for finishing first, but won
a gold medal from my family for recognition of being a
winner in their eyes!
I am one lucky lady, wouldn't you
God has truly blessed me in more ways
than one. Never say, "I can’t," because through God, we
can do anything we want if we put all our trust and
faith in Him.
On March 28, 2002, I will be
celebrating my 4th year transplant anniversary. Even
though I still have hepatitis C, I am so happy and proud
to say, that I am doing "fantastic!
My liver numbers look great Praise the
Lord! I can do more now, than I could do when I was in
my thirties. My family can't keep up with me. None of us
knows what the future holds. Our lives are in the hands
of the Lord
But for today, I live. I try not to
think about tomorrow. I take one day at a
I was diagnosed with Primary Biliary
Cirrhosis in 1986. It is a slow progressive disease. My
first symptom was fatigue, which became all consuming by
2000. A lot of other autoimmune diseases popped up:
Sjogren's Syndrome, rheumatoid arthritis, severe
thinning of my corneas, itching that was relentless,
skin problems, and then pneumonia. Slowly, as the liver
shuts down, the poisons in you body take over everything
including your mind. I could no longer reason, do math,
remember phone numbers, names, events, etc. I covered it
up pretty well I thought but later I learned that I had
not done as good a job as I thought. Days, weeks, months
became a blur. It was like I lived in a fog.
In January of 2000, my
gastroenterologist did another liver biopsy and saw that
the disease was causing more damage to my bile ducts. I
was suppose to be moved up on the list in March but
thrrough a paperwork error, I was not. I got a call on
July 9th but had to tell my surgeon to pass because I
had pneumonia. It was not until the Sunday after
Thanksgiving that we were called again. We waited at the
hospital for 14 hours and they had to tell us the liver
was no good. Two weeks later, a two-hour wait, and the
liver had hepatitis C, so it naturally went to someone
else. Christmas came and went, and on December 29th I
was put on call and taken off 3 times in one day. That
night the phone rang and said for us to come in. We went
and they took me to surgery at 4:45 AM. I woke up six
hours later in ICU, on a ventilator, but was off it in
six hours. I was in my room the next day, and eating
solid food the day after that. I came home 6 days after
surgery. I have not had any major problems, and am doing
anything I want.
I went to the Transplant Games in
Orlando and pitched the softball, and my husband and I
did the 5k walk. The most marvelous thing we did there
was to attend the Donor Appreciation Ceremony. I belong
to a very active support group and have become friends
with recipients and donor families and all the wonderful
people in our hospital and organ center. Life has never
been better and yes I do tell my story to promote organ
donation awareness. No one should die because the didn't
get a chance at the marvelous
Kyle was born on September 13, 1999,
and was diagnosed with biliary atresia at 8 weeks. He
had the Kasai surgery on November 29, 1999. He had
significant portal hypertension even before his Kasai
surgery, which enlarged his spleen and caused internal
bleeding. After the Kasai he had many complications,
including pneumonia with a collapsed left lung. He was
hospitalized for his first Thanksgiving, Christmas, and
Although he stabilized and began to
grow, the damage had been done and his liver disease
progressed to cirrhosis. He was listed for transplant in
January 2000 and we immediately started living donor
testing. I was refused as a living donor even before he
was officially listed. I have polycystic kidney disease
and couldn't donate. One by one, other family members
were also ruled out.
We had a pager and waited for the call,
but months went by with no call. In November 2000,
Kyle's Aunt Lyn was tested to see if she would be a
match. Lyn is my brother's wife and is not a blood
relative, but when my brother was ruled out as a donor,
she volunteered to be tested. She was a match and
finally on December 19, 2000, Kyle got his new liver—a
gift of love from his aunt.
During the 5 months before transplant,
Kyle had almost constant infections and IV poles were a
regular sight in our home. He had MANY antibiotics and
other meds. He had internal bleeding for 9 months before
transplant. Five days after transplant, Kyle was walking
around the ICU with no IVs and no internal bleeding.
Today, Kyle is 3 years old. He loves to
play outside and ride in the car. He's very active and
healthy. He likes anything with wheels and will play
(and sing) for hours. He's already had 3 new stitches in
his head for falling outside. He likes turning the
lights on and off, and flushing things down the toilet.
To newcomers he is a normal little boy who doesn't look
like he's ever been sick. All his liver numbers are in
the normal range.
We felt very alone for much of the time
that Kyle was sick as we didn't have a computer and we
didn't know anyone else who had biliary atresia—or any
other liver disease. We now have a happy, healthy little
boy and a tremendous network of new friends because of
his illness. I am glad to have the chance to tell his
The year was 1997. After a night out on
the town with my husband I awoke with flu like symptoms.
I had been working some really long hours managing my
own retail store. I laid around for a couple of days and
was not feeling any better, so I went to the hospital
and was admitted for tests.
Several doctors came to see me, but it
was ultimately a gastroenterologist who delivered the
devastating news. I was diagnosed with Chronic Active
Hepatitis C. I remembered when I got this virus back in
1976, thanks to a very small tattoo I had gotten. The
virus came and went so quickly that I never really
thought about it again until this bombshell was dropped
Dr. Knowles, my gastroenterologist, set
up my evaluation at Baylor Medical Center in Dallas, and
I went, stayed five days, and had every test known to
mankind run on me. Or at least it felt like I had. I
came home and waited for the phone call that would
determine my fate.
That phone call came one week later. It
was the end of April 1997. I was told I had extensive
cell damage due to the on-going hepatitis, and was being
listed for a liver transplant. I received my beeper and
settled in for the long wait... I was getting sicker and
sicker as the months passed and praying for that phone
call to come in time.
July 1998. 9:15 pm. I get the much
awaited phone call that tells me a liver is waiting for
me. I was already packed and ready and my way by 10:00
My surgery was scheduled for 1:00 pm,
but I actually didn't go in until 4:30 pm. The surgeon
was doing some extra test on the new liver and wanted to
make sure the match was perfect.
My surgery lasted 5 hours and all went
extremely well. A perfect match I was told. After 24
hours in ICU I was moved to room 1414 on the 14th floor
and recovery began...
I stayed 6 days in the hospital and
then off to Twice Blessed House, an apartment complex
set up for transplant patients at Baylor, for my 2 1/2
month stay. All was going well until my 3rd week out.
Blood work showed rejection, and I was put back in the
hospital. Massive dosages of steroids were given me to
bring me out of the rejection, but they were not
working. Soooo... I got to be one of the 15% who had to
take the OKT-3 treatments. The shot I took everyday made
me feel just awful, but doctors assured me the end
result would be worth it. Easy for them to say, they
weren't the ones lying there with flu like symptoms 10
times worse than the actual flu. Anyway, I toughed it
out and after 7 days in the hospital I was released back
to Twice Blessed House and the healing truly began... I
did have to go back and forth to the hospital for
another 7 days to take the OKT-3 shot, but the worst
part was over, and I was on the mend.
In September, I got to start coming
home on the weekends, and this helped so much. I was
getting stronger and stronger everyday and I could
really feel the change.
Finally on October 3rd I was released
from Baylor and free to go and enjoy my new life, and
that I have. I go to Baylor every three months for
check-ups and even though the hepatitis is back I still
feel great and that I am in the best hands I can be with
the whole staff at Baylor, and God watching over me.
My medicine levels are low. I take 75
mg of Neoral twice a day and 250 mg of CellCept twice a
day, and that's it. I feel very fortunate to be at these
God has truly blessed me with this
second chance at life and for bringing many transplant
friends into my life.
Organ donation is the greatest gift
that one person can give to another. Those who can
donate should, and for those who have already, our
undying love to you always.
Peace and love to all who will read
On Feb 28, 1999, my daughter, Madison,
came into this world—seven weeks early, but looking very
well .To our surprise, within that first 24 hours,
Madison started vomiting profusely and had to endure
many tests to find out why. The doctors did not know
what was going on, and she was sent to the University of
There, she was diagnosed with
syndrome (Berdon syndrome)—such big words to describe
such a little girl. This all meant that Madison had a
large bladder, small colon, and little or no motility to
her small bowel. Children with this rare diagnosis
almost never survive. We were given the option to let
Madison go or to supplement nutrition with TPN (Total
Parentral Nutrition), but she would need a small bowel
transplant. Well, that’s the option we chose, the docs
not really agreeing with our decision.
She was transferred to another hospital
for preparation, and for our training in her care; that
is where she stayed for the first 2½ months of her life.
In this time, we were introduced to a GI doc that was
familiar with the small bowel transplant, and made
arrangements for her to be seen at the Children’s
Hospital of Pittsburgh in October of ’99. that is when
we found out she would need a multi-visceral transplant
of the stomach, pancreas, small bowel, and liver
(because prolonged use on TPN had caused cirrhosis of
the liver). She was placed on the waiting list, doing
relatively well, but getting sicker all the time with
We got the call on June 6,2000.
They had organs for her. The surgery took 15 hours, but
went well. Madison did very well the first 2 weeks after
surgery, then started rejecting severely. she was
gravely ill for two months, on a ventilator; we were not
sure that Madison was going to live. The docs took such
great care of her that Madison pulled through. Two weeks
after getting off of the ventilator, and a total of 4½
months in the hospital, she was released.
And to this day she is doing relatively
well. Organ donation saved my child’s life and many
others like her. So please keep spreading the message.
My name is Maribel Miranda Mendoza, I
am 19 years old and I have Biliary Atresia. I was born
on February 5 1982 at UCH Hospital in London, weighing 8
pounds, 7 ounces. A week later I developed jaundice,
pale stools and was not able to digest milk and was not
gaining weight. Therefore I was re-admitted at UCH where
they decided that I needed to have a liver biopsy.
However, as they didn’t have the doctors who specialised
in liver at the hospital they contacted Kings College
Hospital, which specialises in all types of liver
disease for a doctor to come down and perform the
biopsy. Whilst awaiting for the results I was kept at
the UCH for further investigations and close
observations, then two weeks later the results from the
biopsy had arrived, and the news wasn’t good as they
detected abnormalities in my liver. It was then decided
I’d be transferred to Kings College Hospital in SE
London, where they’d take over my care. Two weeks later
after having further investigations, they diagnosed me
with Biliary Atresia, and I needed to have a Kasai. So
on March 25th 1982 Dr Howard performed my Kasai. Which
thankfully was a success and was on a drain bag for only
8 weeks. During the first year or so after my Kasai I
went for monthly check ups at the clinic and as I grew
older I progressively got better and so gradually they
increased the gap between my check ups and every 2-3 yrs
I was admitted for OGD to ensure everything was okay
At the age of 7 I became very fussy in
what I was eating I was very skinny and the doctors
where getting concerned as I was underweight, weighing
just over 3 stones and had to be force fed in order to
eat. Therefore they gave me a vitamin supplement to put
on my food, which would also make it sweet so that I
would eat. I eventually I gained back my appetite and
was taken of the supplement. Since then I seemed to have
been okay up until I was about 14 years old. My
bilirubin shot up quite drastically too 300+ and that’s
when the doctors told my mum that it won't be very long
till I would need a transplant, probably within the next
5 years. From then onwards my bilirubin levels kept
going up and down for a few years.
Then on January 2000 just after the
Millennium I became ill, at first I didn’t take much
notice of it as I thought it was just a bad flu and
would soon go away. However 2 weeks later I noticed I
wasn’t getting any better and I was losing weight and
was in a lot of pain so my mum phoned my doctor and I
was admitted at Kings and I had Chronic Cholangitis, and
developed Secondary Biliary Cirrhosis. I was in hospital
for 3 weeks, and was on a large dosage of IV
medications. During my stay I was told that I had to be
moved over to the adult care and that they would take
over my care, so I was introduced to the adult liver
team and visited the adult liver wards. It was a whole
new experience for me, which I wasn’t too keen on. I was
then told that I needed to have a liver transplant as my
liver is deteriorating slowly and they want to do it
before it gets worst. It was all too much for me to take
in at the time. Luckily I’ve got good friends and family
around me to comfort me, and the nurses on the
paediatric ward were a great comfort when I was feeling
down and needed a shoulder to cry on. During that year I
had about 4 bouts of Cholangitis and was in and out of
the hospital. I was then listed for a transplant on June
and I am now on oral antibiotics, which I take daily
until my transplant.
On June 2000 I finished college, it was
a tough year and I thought I’d never get through it as
there were so many times when I just wanted to give up
and drop out. However I was lucky to have such great
teachers who understood my situation and who helped me
get through it. Since then I have worked for the first 3
months, but became too weak to carry on so I quit.
Then on June 4th 2001 at about 10:30 pm
the phone rang, and it was my transplant coordinator
telling me to come down to the hospital, as there is a
possibility of a suitable donor for me. So by 11:30 the
ambulance had arrived and I was driven to the Hospital.
When I got there I had to have all the tests to see if I
was fit to go through with the transplant. At about 2 am
all the tests were over, and it was just a matter of
waiting for the time to pass, as I was scheduled to go
into theatre at 7 am on June 5th 2001.
It was a 14-hour operation, as the
surgeons had complications because one of my veins was
damaged which they had to repair and I had lost a lot of
blood, so I needed 2 blood transfusions whilst in
surgery. After the operation I was then brought back to
LITU where they stabilised and monitored me till I woke
up. I didn’t wake up until the next morning and the
first thing I said was, "I want my mummy". So the nurse
phoned my mum at the hospital accommodation and she came
straight down. I opened my eyes to see her crying, so I
cried with her. Though I don’t actually remember any of
this, its what my mum told me.
The next day I was transferred to the
high-dependency unit, where I stayed for almost 3 weeks
because I caught many infections, and was highly sedated
for ages. My central line, wound and chest all got
infected, which complicated things a lot and made me
weak for a long time. It wasn’t until the fourth week
when I started to walk around a little bit with the help
of someone, and started to talk a bit more. Also my
kidney got very weak, which meant that I was not
discharging enough fluids so I had to be given extra
fluids through IV. By the end of the third week I was
moved down to one of the normal wards to make a full
recovery. Because my wound got infected with MRSA
[Methicillin Resistant Staphylococcus aureus], it was
continually leaking, as it had to be re-opened to get
rid off all the fluid and infection inside. I had weeks
of sleepless nights, most nights my bed had to be
changed at least four times because of the leaking.
During night times when I was alone I
often cried thinking I wouldn't get through it all,
because the pain was unbelievable, every hour I would
ask for pain killers. I sure wouldn’t want to go through
it again. I was kinda lucky to have a young girl next to
me who was really sweet and we became quite good friends
and we would be depressed together.
I was discharged on July 5th 2001. My
wound still hadn't healed or closed yet, but the doctors
didn't see any reason why else I should be in hospital,
when I could have a district nurse come to my house to
clean and dress my wound daily. However a week after I
was discharged, I spiked a temperature of 40 degrees
[104º F.], so I was re-admitted for a week. Since then
I've been okay and slowly been getting my energy back
and I have started to go out again with my friends and
do normal things. My wound finally closed last
Everyday I thank God and my donor and
his/her family for giving me a second chance in life I
also want to thank all the people who have helped, me
supported me and been there for me through the years,
family, friends, teachers throughout my school years and
the doctors who saved my life. However my biggest thank
you goes out to my MUM. I owe her my life and I love her
so much. I know it couldn’t have been easy for her and I
just hope that someday in the near future I can repay
her back in some way.
I was born Dec. 21 in Minnesota. I had
baby jaundice but was healthy, so they thought. While
visiting my grandma in Wisconsin, my sister became ill.
My mom took her to the doctor and decided to take me
along. There was no reason for her to take me because my
grandma could have watched me.
After the doctor checked my sister, she
asked my mom if she could look at me and my mom let her.
The doctor told my mom she thought something was wrong
with me because I was so jaundice. She suggested I be
taken to my pediatrician at home as soon as possible. As
soon as we returned home my mom took me to my doctor. He
checked me and said to take me to the hospital
I was then diagnosed with Biliary
Atresia a rare liver disorder in newborns, which
destroys the bile ducts that carries bile from the liver
to the intestines. This disease is a progressive
destruction of the bile ducts. At age two and half
months I had my first surgery called the Kasai. The
kasai is a surgical procedure that connects the liver
and small intestine so the bile can flow. I had the
kasai just in time. After turning three months old it
would have been too late to have the surgery. Without
the surgery my life expectancy was 4 years or less. Even
with the surgery there was no guarantee it would
Even if it did work there was no
telling how long it would work.
When I was 10 yrs. old my spleen had
become enlarged from the effects of the liver disease. I
didn't like my large tummy because I couldn't play
soccer like my brother and sister. I decided that I
wanted something done about it. So in January 1987 my
surgeon tried to embolize (shrink) my spleen in two
different procedures but it didn't work. My surgeon had
to remove my spleen after the second procedure.
I was readmitted to the PICU about a
week later. After my spleen was taken out I had gone
into liver failure. My family was told that without a
liver transplant I would live less than two years.
I was transferred from Children's
Hospital to the University of Minnesota to be worked up
for a liver transplant in February 1988. I was extremely
ill while waiting for my transplant. I was kept alive on
IV's. I couldn't eat or drink because of bleeding
varicies. While I waited I was plagued with unexplained
fevers, ascites, varicies, and pancreatitis. Because of
the unexplained fevers I couldn't be put on the
transplant waiting list.
In order to be on the waiting list I
had to be fever free for two days. Whenever this would
happen and my name would go on the list my fever would
return and my name would come off. This went on until
they found that I had cytomegalovirus (CMV).
After being on and off the list for
four months a liver became available. The surgeon came
into my room to tell me but I didn't want it. I was
scared and not ready. I knew that I could die without
it. A few hours later we were told there would be no
transplant that day. The parent of the donor had changed
his mind and didn't want to donate. I turned to my mom
then and said "Don't they know a little girl is going to
die?" The waiting continued.
A week later on April 30, 1988 we were
told there was another liver available. This time I was
ready and wanted the transplant. I went into surgery
that night and by the early morning of May 1, 1988 I
received a new liver, the ultimate gift of life! When
the surgeon took my liver out it crumbled and
disintegrated in his hands. It was amazing how long it
did keep me alive..
My recovery went fine and I left the
hospital in June. I started sixth grade in the fall
along with all my friends. The first year I was in and
out of the hospital a lot but each year it gets
The only thing we knew about the donor
was that the liver was from a seven-year-old boy in a
van accident. In October 1996 I decided to write a
letter to his family for the first time. I had a reply
less than two months later.
A Life Lost, A Life Saved
Jeremiah was their oldest son. He had
been crossing the street in a crosswalk and the car
should have stopped. It didn't and he was hit while his
sister watched. He was in the hospital for a week before
his parents made their decision to donate his
On August 8, 1997 my family and I along
with KARE 11 News made a long drive to Franklin,
Indiana. It was there that I finally got to meet the
family who so unselfishly donated their son's liver so
that I could have a second chance at life! I am so
grateful for the decision they made in their time of
grief. A thank you is never enough for this kind of
I was diagnosed with Primary Sclerosing
Cholangitis around 1995, and became gradually sicker
until the time of my transplant, May 25, 2001, Henry
Ford Hospital, Detroit, MI.
The number of bleeds the surgeons had
to deal with complicated my surgery. I think that I was
transfused with 110 units of blood products over the
course of 2 days of surgery. Hospitalized for 30 days, I
couldn't eat for 2 weeks, and my weight dropped to 114
lbs on a 6-foot frame.
Yet, I knew the moment I awoke from
surgery, my new liver was working well. From that
moment, I felt like a new person. No jaundice. No
itching. And a ton of energy. It was an absolute
And I am happy to say I am now back to
a lean 155 lbs, run 25 miles a week and even trained
this last summer for the 2002 Chicago Marathon.
Unfortunately, I twisted my knee 2 weeks before the
race, so I only ran the first 5 miles before my knee
quit. I will be training this spring for the San Diego
Marathon in June, and will make another attempt at
Chicago 2003. I promote donor awareness in Metro Detroit
fulltime and consider all these efforts a tribute to my
donor family and their loved one's liver that now
functions in me.
I was diagnosed with HIV in 1990 and Hep C in 2000. I figured I would need a new liver someday but wasn't concerned because I helped care for my little brother who had already had two liver transplants, and he seemed to sail right through both surgeries and did not experience any rejection episodes. It never occurred to me that being HIV positive was considered a contraindication to successful transplantation until my liver became severely cirrhotic and my doctors in Houston said that there was nothing they could do for me.
Unable to accept that fatal news, I used the internet to learn everything I could about my condition, searching for any information that might help. During my manic search I discovered that a research project, headquartered in San Francisco and including 20 transplant centers across the country, was recruiting patients with HIV who required a solid organ transplant (liver or kidney). One of the objectives of the study was to prove that having HIV was not a contraindication for a successful solid organ transplant. To my disappointment, however, I discovered that no transplant center in Texas participated in the study. In fact, the closest participating hospital was Tulane Medical Center in New Orleans and the disastrous affects of Hurricane Katrina had caused that location to cease accepting new patients for a while. I decided to contact my son who lived near San Francisco and arranged to stay with him while I underwent all the testing necessary to determine whether or not I qualified to become a study participant.
Before I was able to finalize all the arrangements necessary for me to move to the Bay Area, I was hospitalized in Houston with rapidly progressing end stage liver disease. My brain had become so toxic that I could not begin to comprehend the seriousness of the situation I was in. It was obvious to my father, however, that I would soon die unless I could get to San Francisco immediately, qualify for the research study and receive a transplant. He and one of my brothers conspired to get me out of the hospital in Houston and, under my brother’s care, fly me to San Francisco. My doctor in Houston advised against my taking the trip because he thought I would not be able to survive the flight. We ignored his advice and took the next flight available to San Francisco. I readily admit that it was one of the worst experiences of my life and I swore that I would never get on another airplane, but I didn’t die and we did make it to San Francisco. I was admitted to the University of California at San Francisco the next day, February 10, 2006. My name went on the transplant list immediately and within a few weeks my MELD score was approaching 30. In addition, I qualified for the research study which to me, (using my seriously impaired brain) meant I was destined to live long enough to have a liver transplant. During the next six weeks I spent more time in the hospital than I did at my son's home and on March 28, 2006, a suitable donor was located and I was given a new liver and a new life. Amazingly I was on the transplant list for a short six weeks.
Two and a half years have passed since that date and I have not experienced any rejection episodes or any problems at all with my new liver. Also, my HIV viral load has remained undetectable and my CD4 count is within the normal range. As time goes on, however, I become increasingly aware of the challenges my doctors face in balancing my meds so that the immunosuppressive medications required to prevent organ rejection do not conflict with the meds I must take to maintain a strong enough immune system to control the HIV.
I am convinced that the number of people in this country with HIV and liver and/or kidney failure who have had the good fortune to receive a life saving organ transplant is woefully small. In Europe, about 30% of HIV positive patients are co-infected with a hepatitis virus and sadly, as of 2003, cirrhosis resulting from chronic hepatitis has emerged as a leading cause of death among HIV positive patients. I am so proud (and fortunate) to participate in a study designed to alter this trend with irrefutable statistical evidence. The results of this study may in the not too distant future provide the impetus necessary for the medical establishment in this country to change the standard of care for co-infected individuals, thereby extending lives that heretofore have been considered disposable.
January 18, 2005, I was going to Seattle and was in a minor car accident. This happened going east on to 520 to south I-5.
My car was hit from behind and swung around and hit the cement barrier.
The police came took a report and sent me on my way. When I hit Bellevue I realized that my car was driving strange because the back axle was bent.
I felt fine for a couple of days and than my leg froze up and could hardly walk.
I went to a chiropractor, massage therapist and acupuncturist to see if they could help.
I also went to a back doctor to see if he could help with the pain.
That was on January 26, 2005 and he put me on a NSAID called Etodolac, which I took for 30 days, I went off the drug for 5 days and was put back on the drug, Etodolac for another 30 days. During this time I went into Acute Liver Failure, this was caused because the drug was given to me a second time.
My symptoms were I was fatigued, had sore breasts, no appetite. I really thought I was pregnant at 47. As these were the same symptoms I had when I was pregnant 16 years ago. I was turning yellow and did not realize it, as we had just gotten back from Hawaii and I was turning tanner as the week went by.
On March 18, 2005 I turned yellow.
I called the doctor that prescribed the medication to me and he told me that it could not be the medication even though the paper work I had received from the pharmistists said that it could cause you to turn yellow. I went to the walk in clinic and the doctor there said it could not be the medication; I even won a 5 dollar bet. Lost the liver but won the bet.
On March 19, 2005, I went to the doctor and they took blood test and had an ultra sound to see if I had gal stones, that test came back negative.
On March 20, 2005 I had another blood test.
On March 21, 2005 the doctor called and told me it looked like it was clearing up.
On March 22, 2005 they called and told me to get to the UW Medical Center, where they admitted me and put me on the transplant list. The doctors at the UW did not believe it was the Etodolac until they removed my liver and told me that it was the Etodolac that was the cause of the liver failure.
On March 28, 2005 I was given a liver transplant.
On May 18, 2005, they did back surgery to correct a herniated disk.
Since September of 2005 I have been working out 3 days a week to rebuild my body to be able to compete on my horse and to regain my life.
I am currently only taking one anti-rejection drug at a low dose that should be going lower soon. With a lot of support from my family and friends I have been able to work myself back to my old self. My sister is here and she can testify to that.
What I hope that you walk away from this talk is one thing.
As a doctor, listen to your patient, I told the back doctor to please do an MRI because I knew there was something wrong with my back, he chose to put me on drugs instead. I got my MRI two weeks after the liver transplant and they found the herniated disk.
After the fact I found out that the Doctor should have been doing blood tests for liver function during the time I was on the drug. This information came out of a Nursing handbook. If the doctor had me take these tests maybe the outcome would have been different.
I suffered from a genetic condition called Gardener's syndrome (FAP). This disease is a mutation of cells in the intestinal tract and stomach area where polyps (cancerous and non-cancerous growths) grow. My mom passed away 12 years ago from this condition. When I found out that I also had it, I began many years of colonoscopies and maintenance medications to shrink the polyps. Nothing really worked. In 2005, my gastro doctor informed me that I needed to undergo surgery to re-section my intestines (a J-pouch), otherwise by the age of 40 I had a 100% chance of having colon cancer. Upon undergoing evaluations and prep work for surgery, they discovered a desmoid tumor the size of a tennis ball that was wrapped around my intestinal tract.
I went to Ft. Lauderdale in January 2006 for exploratory surgery, but they could not do anything with my intestines because of the size and location of the tumor. I began seeing an oncologist in February to try all sorts of medications to try and shrink the tumor and at that time, a transplant was mentioned. All of the medications made me extremely sick, I suffered from lots of painful ovarian cysts, had weekly CT scans and ultrasounds, but after 6 months time, the tumor was not shrinking. My doctors in Ft. Lauderdale recommended a world renowned transplant specialist in Miami- Dr. Andreas Tzakis at Jackson Memorial Hospital. I went for my consultation in Aug and went through all of the insurance stuff to get accepted on the national list. On Oct. 4th, I was put on the list. After 11 days on the transplant list, I was called saying that organs were available for my transplant. I drove to Miami- a 4 hour drive from where I live in Orlando. On Oct. 17th, 2006 I received my transplant. Six of my organs were transplanted that day- my stomach, spleen, pancreas, duodenum, small intestine and large intestine. It was an 18 and a half hour surgery. I did really well.
I went back to recover at my Dad's house in Clearwater on November 30th. Unfortunately I was only there for 9 days before I was rushed back to Jackson Memorial and later diagnosed with perforation of the intestines. I had emergency surgery to repair that but only had a 3 hour window of survival.
I have had a few complications from the transplant. Dehydration was a huge issue for me to overcome and because of my Prograf levels went in the hospital for renal failure. I had to have stints put in my ureter then. I have had major problems with eating in general, but finally got those under control. I lost all of my hair because of the medications. I developed diabetes and had to inject myself 5 times each day with insulin and suffered from really high blood pressure.
Things are good right now- no problems. I get my blood tested monthly and have had nothing but excellent reports. I do a monthly protein test also to check for levels of citrilline showing possible rejection. And, I am down to taking only 6 pills total each day!
Dan Doucleff Transplant Story
My story started about three years ago, I was sitting at my desk at work and heard the woman in the cube next to me (Katrina) counting out what seemed like an awful lot of pills of some sort. I noticed she took the pills every day at about the same time. One day she did not take the pills, so I asked her about it. She thanked me for reminding her and took her pills. She said she can’t afford to miss her medicine. She said she had received a donor kidney and took the pills to keep her body from rejecting it. I did not think another thing of it. I was at work and made a comment about my blood sugar level and that I had experienced several low blood sugar episodes recently. Katrina said she was in the hospital with someone who had both kidney and pancreas transplanted at the same time. I wondered why? I had no idea that a pancreas could be transplanted from one person to another. I had even less idea of what had to happen to make that type procedure possible for anyone. Katrina gave me the name and phone number of the coordinator from IU hospital that had helped her. It turned out that Katrina’s coordinator and I were acquaintances. We have friends in common. Her name is Mary and we see each other at events we are both invited to and know each other fairly well. I did not know anything about her job.
My spousal equivalent Shirley and I discussed my condition and both agreed that my condition was bad and getting worse. I monitored my sugar levels several times a day and never had control. My blood tests always came back with poor results. I was suffering from out of control diabetes and I was feeling the effects. Shirley was concerned, to say the least. I barely woke up one morning. The bed was soaking wet. I could not speak clearly. Shirley brought me some orange juice. We struggled with the glucose monitor and my level was 21. We checked it again it was 23. The previous night, about 6 hours earlier it was over 200. I had another event that included driving and work. I had low sugar and was mumbling to myself. People started to gather around me to see what was wrong. Luckily, Shirley was there with me and asked a co-worker (Casey) to go get me some juice. The juice brought me right out of it, for the moment. I was scared when I realized I had driven my new car 85 miles per hour on the interstate and had to catch myself from passing out on the way to work. I was afraid I would die. I was afraid I might hurt someone else. I have two teenage sons who ride in the car with me. Shirley rides in the car with me driving all the time. I was putting the three people I cared most about in danger every time I got behind the wheel of my car.
Shirley and I decided to talk to the people at IU about transplant. We set up some preliminary tests to see if I might be a candidate. My insurance agreed to pay for the tests. The tests showed that I was in pretty good shape other than the diabetes and registered less than 1 percent on a C peptide test. I went for more tests and to meet the director of the transplant program at IU, Dr Fridell. He’s a Great Guy. I petitioned my insurance company to see if they would approve such a procedure, they wanted more tests, more doctors, more tries at other treatments. Finally they agreed to fund the procedure and the medication. I got a call about the middle of May 2006. I was approved to go on the waiting list for a donor organ. I was scared, hopeful, anxious and relieved.
So, now I’m on the national transplant list. I made arrangements with a close personal friend to handles matters for me if there was an unforeseen problem. Basically I asked a friend to make decisions on my behalf in the event that I became incapacitated. In a life or death situation I did not want Shirley to have to pull the plug on me. I did not think it would come into play, but it did. Not sure whether to sit by the phone or live my life and be ready to go at any time. I waited around for a while then started to venture out with cell phone always ready to take a call. I was advised that there may be several false alarms, not every donor has a pancreas that is healthy enough to transplant. Shirley and I had a plan in place and I packed a big bag to take to the hospital. The bag was a big mistake. Not long after going on the list I got a call. There was a potential donor and the transplant team went to harvest the organs. The donor’s pancreas was not healthy so I was sent home. I learned my lesson that night not to get too excited or upset when the phone rang.
August 30th in the early evening, I got a call to see if I was available and could get to the hospital. I thought no big deal- another false alarm. I called back after a few minutes and the coordinator said to come to the emergency room. Blood was drawn, tests were run, phone calls were made. Someone came into the room and said get him ready for surgery. I thought WOW it’s going to happen. Am I ready? It did not matter, I made the decision and I was going through with it. The transplant surgery happened on the 31st of August 2006. I came out of surgery and felt bad, tubes everywhere, nose, mouth. I got through the first couple of days. I was tired and I was ready to get out of the hospital and go home. Gradually the doctors started removing tubes and I was encouraged to walk. I was encouraged to poop. I was encouraged to wash my face, brush my teeth, learn about the pills I would take, and get the heck out of the hospital. So I did, and I was glad to. The way the clinics are set up I felt like I left and came back in the same day. I no longer was home till I was returning for my first check up.
After about a week or ten days I got sick. I started throwing up and was unable to ever get any rest. Shirley called the coordinator and she said to come back in to the emergency room. They did a CT scan and it was determined that I would need emergency surgery right then and there, that night, right away. I was upset because Shirley’s birthday was coming soon and I had not picked out a card for her or a gift. I was determined to not stay in the hospital another day. I had no reason to believe I was not cured, two operations in ten days was enough to fix anybody, right? Well, no…I had an obstruction. The doctors corrected it, put me back together and sewed me up.
I wanted to go home to buy the card and gift for the woman I love. I asked to go. The doctors said you can’t go. You’re sick. I was sick. I had an infection and it spread through my body. I remembered struggling to get out. I was mad and I fought to get out. Luckily the doctors and Shirley would not let me sign myself out. I called every phone number I could remember to find someone who I thought might get me out of there. I was pissed, I wanted to go home but no one would let me go. I remember a nurse saying that I seemed very disagreeable. Then I woke up. It was three days later. My friend Nick, who I trusted to pull the plug on me, was there. My friend Elaine was there, holding my hand. PJ, Cathy who were life long friends and many doctors and nurses I did not recognize were there. Shirley was at work. She had recently started a new job and was not able to be with me the whole time. Someone took a tube out of my mouth and all the medical people left the room. I still remember holding Elaine’s hand. It was very comforting. I don’t know what all happened while I was away, but I was back and I was ready to go home. My doctor, Dr Fridell, came to see me. He assured me that he had everything under control as far as my treatment was concerned and he would continue to monitor my status and I would be released when he was satisfied that I was okay to go home and not until then. I trust Dr Fridell and believe he saved my life. I put my trust in my doctor and my faith in the Virgin Mary. I am Catholic and prayed more Hail Mary’s than I can imagine. It’s no lie that people get religious when they are faced with doom.
After a couple of weeks I went home. Then I came back for clinics, procedures, clinics, procedures. Finally, the “goo” stopped oozing from my drains and my incision stayed shut. I was worried about my job. My boss from work called me. Her name is Teresa. She told me I could come back to work on a part time basis until I was strong enough to work full eight hour days. That may have been the best phone call I ever received. I have a special attachment to the people who helped me through September and October of 2006. All the people who called, sent cards, visited, all the prayers from my church from my family. The effort from the staff at IU was over the expectations I ever had. I remember that Julie held the door open for me and welcomed me back to work. I mostly remember wanting to get home to Shirley, whose love I can not live without. I’m in GREAT shape now. And would do it all again for another five minutes with my loved ones.
In August 2002 Dani Shotel was a healthy 26-year old young woman with an almost perfect life. She had gratifying work, as a special needs teacher in an elementary school in Arlington County, Virginia, many friends, a loving family, and a boyfriend, Scott Greene, whom she was soon to marry. Then just one month later, on September 11 -- an appropriately infamous date--Dani was diagnosed with Acute Myelogenous Leukemia (AML). From that moment on, her world turned upside down and she and her family went on an unforgettable journey. They returned with many valuable life-lessons, and want to share them with all cancer victims, their families, their loved ones, and professionals involved in the wellness process.
In this inspirational and informative book, Dani's parents, Jay and Sue Shotel, vividly convey the strength and courage their daughter displayed in her battle with AML, as they tell the story of the events that led to her recovery. Along the way they provide a wealth of information about leukemia, and tell engrossing stories about their family's journey to an unknown place, the roles each family member played to support Dani in her fight for life, the value of love and friendship, the anguish in the quest for answers, the power of positive thinking, the vital decisions a family must make as they proceed through the medical maze, and about the young German citizen, Tom--who donated the marrow that saved Dani's life and then flew in to Washington, D.C., to attend Dani and Scott's wedding in 2005!
The vivid details in It's Good to Know a Miracle: Dani's Story, are made possible because Sue Shotel insisted that the family keep a log of everything that occurred during the period from September 11, 2002, until Dani's release from the Seattle Cancer Care Alliance and return to Washington, D.C. in May of 2003. In telling their story, the authors hope that the level of detail provided in this book will assist families who face similar circumstances in dealing with the known, the unknown, and the decisions that need to be made along the way.
For more info see: http://itsgoodtoknowamiracle.googlepages.com/home
I’ve Got Multiple What?
I was relieved when the doctor diagnosed my multiple myeloma. I had so many aches and pains, booboos and owies, and body parts that weren’t doing their part, I felt like I was slowly starting to circle the drain.
I woke up from a nap on a cold, dreary, rainy afternoon before my disease was diagnosed and had a strong, undeniable sense I was dying. I’d be playing a harp in white robes if my wife Mary Grace (M.G.) hadn’t dragged me into the doctor.
We actually stopped at a bookstore on the way home to do a little research on myeloma after our meeting with the doctor. What we found wasn’t good. The five year survival rate for people diagnosed with the disease is about 36%. Yikes.
Word of my predicament spread quickly through our families. I have nine brothers and sisters and M.G. has five sisters. Hours and hours were spent on research. The consensus was that I should enter the transplant program at the Arkansas Cancer Research Center (ACRC) in Little Rock.
They do tandem transplants, a bone marrow transplant followed by a peripheral blood stem cell transplant. The center, now known as the Myeloma Institute of Research and Therapy, has done about 7,000 peripheral blood stem cell transplants (PBSCTs) to date. Almost all of these procedures have been done on myeloma patients.
M.G. went in on our first trip to ACRC to be tested to see if she could be my platelet donor. Unbelievably, her test revealed she had leukemia (Chronic Lymphocytic Leukemia or CLL). One of the doctors said he thought she should enter the same protocol I would be going through. She immediately replied, “No, first will get Mark through his treatment, then will see about me."
Her decision was the single most courageous act I have ever witnessed. How do you put your life on hold, and in jeopardy, to be a caregiver for someone else?
We made a pact that day: M.G. wouldn’t die so she could take care of me. I wouldn’t die so I could take care of her when she began treatment. It might sound crazy. . . but so far so good.
I did two tandems at ACRC and another PBSCT at Froedtert Hospital in Milwaukee where I live. I count that as five transplants and have latched on to the tongue-in-cheek title of the World’s Most Transplanted Person. Has kind of a nice ring to it don’t you think?
Like Risa, I felt I wanted to do something to help other patients who are going to have or are considering having a BMT or PBSCT. These procedures have been used to treat 70 different diseases. There are millions of people in the country who are candidates for transplants. Sadly, there are just about 50,000 blood and marrow transplants performed every year.
I may not know much, but I do know a lot about these treatments. M.G. and I started a Web site to help educate patients about the life-saving benefits of transplants. I have also written a book entitled “Over 140 Things You Need to Know about Your Autologous Bone Marrow or Stem Cell Transplant".
There was an article in the January 28th edition of “The New Yorker" magazine about a woman named Kathy Giusti. She has multiple myeloma. She started a foundation to raise research money to help find a cure for the disease. The foundation has raised over $92 million since 1998.
I wish I had the smarts to make such an enormous contribution, but I don’t. I do have the ability, however, to lend a hand to a few patients. And who knows, one of those people just might be you or your loved one.
Well, that’s my story and I’m sticking to it. Remember to carry a song in your heart and keep a smile on your face. Learn as much as you can about your disease and the treatment options available to you. Make sure your hospital gown is always tied tightly in back. We’ll see you in remission.
I’d like to mention one last thing. Never believe anyone who tells you how long you have to live. I was told I had around three years when I was diagnosed in 1991. M.G. and I celebrated my 17th year as a survivor in February.
Mark and Mary Grace have developed the Blood & Marrow Transplant Resources Web site to share their knowledge about cancer treatment and what they have learned about bone marrow and stem cell transplants. The URL is www.BMTresources.org. Mark has written a book entitled, “Over 140 Things You Need to Know about Your Autologous Bone Marrow or Stem Cell Transplant" to help educate people about the benefits of these procedures. A portion of the proceeds from the sale of the book are donated to The Bone Marrow Foundation to help those who need financial assistance with their transplants.
I’m like any 20 year-old college
student out there. I eat cold pizza for breakfast…I like
art…I love water and laying out in the sun…I listen to
country music…I work…I go to school…I have a funny
looking baby toe. But, I’ve done something most college
kids haven’t; I donated a kidney to my mom. Yes that
right, I gave my mom, who gave me life, a kidney on
January 2, 2002 at Henry Ford Hospital in Detroit,
Michigan. I’m an ordinary college gal otherwise.
My story starts about 20 years ago,
literally as I was a bun-in-the-oven. My mom was
diagnosed with glomerular nephritis, which is a
progressive kidney disease that can be found by an
over-abundance of protein in urine or lab tests. While
my mom was getting her normal pregnancy check-ups for
me, her physician found high levels of creatinine and
protein in her labs. So, she was sent to a nephrologist,
who diagnosed her with this condition.
Years went by. I was born, and so were
four healthy boys after me. My mom’s condition stayed
relatively the same throughout her years having kids and
for many years after. Her nephrologist monitored her
annually, and the only way she could tell her disease
was progressing was through her labs. Her creatinine or
protein would jump, never big jumps, just slight
increases, pushing her progression into renal failure a
It wasn’t until about 3 years ago that
my mom saw her disease surface. She started having what
we would make fun of as the “gaggies." She seemed to get
nauseous over everything, and sometimes nothing at all.
She would wake up to get sick in the middle of the
night, and it was awful to hear her, no control over the
disease. She was also constantly cold, due to a
hemoglobin deficiency. Mom would turn the heat up in the
house in the middle of the summer, and the rest of the
family would roast! It was about a year later that she
was diagnosed with renal failure.
The next couple of years were a waiting
game. Her nephrologist had discussed the possibility of
a transplant with her, but at that point in time, she
was still too healthy to need one. (She was blessed to
remain healthy throughout her waiting and at the time of
transplant.) Her kidney function remained somewhat
constant around 25-28% functioning level the 2 years
Then in the beginning of 2001, her
kidney function started dropping rapidly, down to about
19%, when it had previously hovered in the upper 20’s.
It was in June that I began my testing. As I said, I
have 4 brothers, all of which are under the age of 18,
all of which would not have even been an option for
donation. I also have an older brother from my dad’s
first marriage, but for the obvious reason of different
blood types, he was unable to donate either. Out of
seven kids born to my mom’s family, she was the oddball
blood type, though all offered to donate. I was the
first to offer, the first to be tested, and a match
My decision to donate was a given for
me, though it did come with a few sleepless nights. I
never had to think twice about it, thought at times,
this wuss wanted to back out! I knew if I wanted my mom
to be at my wedding and see her grandchildren, I had to
do this. So, it was for some selfish reasons that I
donated; I wanted to keep my mom around for me.
Once I was deemed able to donate, we
waited until my mom’s kidney function was down around
17-18% before scheduling the transplant. This frustrated
me quite a lot. I already agreed to donate, so I was
furious they (the doctors) were waiting. I wanted to do
it while my mom was healthy, not to mention I wanted to
clear my mind of the looming surgery.
We decided to do the transplant in
between my school semesters. I was off on break the
middle of December, but didn’t want to be laid up for
Christmas, so we did the surgery on January 2. My next
school semester started on January 14. Kind of pushing
it, but I wanted to have Christmas healthy and feeling
The transplant was a huge success. My
kidney took to work as soon as it was hooked up to my
mom. I had the hand-assist laparoscopic procedure, and I
was back to school on the 14th. We did face a small bout
with rejection at the hospital, but the doctors were
able to combat it with steroids. They figure my mom’s
body was confused because the kidney at one time
belonged to her (while she was pregnant for me).
Anyway, to make this long story short…
my mom and I are both doing fantastic. She has her life
back, there are no more gaggies, I have my mom with me,
and I would do it again any day.
Beck and Dad - August 23, 2007
My 28 year old daughter, Beck, found out that her kidneys were failing due to diabetes on Friday, August 25, 2006. Two days shy of a year later, on Thursday, August 23, 3007, she received the right kidney of her 55 year old Dad (Frank). Now, 5 1/2 months post tx, both are doing great! Beck has two wonderful young sons and a loving husband... and life seems back to "normal."
First reports were that the kidneys were functioning at 22%, then within a week, clearer labs clarified a 17% function. The doctor told Beck the best bet was a kidney/pancreas transplant. We spent the next several months WAITING for insurance approval of visits, lived with canceled appointments due to waiting for insurance approval... and the eventual evaluation appointment at UCSF in late January 2007. At this appointment, the suggested course would be to find a living donor for the kidney and remain on the list for the pancreas. The reasoning... to avoid dialysis and the toll it takes on the body.
We were quick to discover that only Beck's hubby and Dad matched in the blood-type category. Mom and two sisters were type B while Dad and Beck, type O. Hubby was ruled out due to blood pressure concerns (no doubt worrying about his wife). Dad needed to lose 45 lbs to be considered for the surgery. He had to meet the 34% or less BMI (body mass index) requirement. Frustrating to us all, we'd lost valuable "dieting" time, not knowing that a living donor was an option. Dad began his quest to be the donor. The thorough (head to toe) testing concluded that Dad was a GREAT match... with a few glitches along the way. His protein levels went up due to a high protein diet. He got the "sorry you are out" letter until he could prove with further labs that it was the diet that caused the protein lab increase and not his kidneys.
In January 2007, Beck had surgery to have a fistual created for dialysis. Dad wouldn't be ready in time... and Beck would start hemo-dialysis in May 2007. With two young boys at home, she opted for this over the PD. She would tell you that it was hell... not the treatments itself but the treatment of the clinic workers, the lack of compassion, etc. The stories she can tell from that experience... would make ones ears perk up. I'll always remember her counting down those last few treatments before surgery. It is the luck of the draw... many centers are excellent, just not hers.
Donors are screened and checked every-which way possible! Transplant teams truly have the donor's health first and foremost above all else. The surgery was finally scheduled and the big day arrived. They were scheduled for early afternoon surgeries but the hospital wanted us there by 8 AM. It was a long time in waiting rooms that morning. Dad says he wasn't really nervous until being wheeled into the operating room, wondering what he'd gotten into. (Note, he'd never been in the hospital since the day he was born. No broken bones or stitches for him.) Having served as a medic in the Air Force he knew the miracles of medicine. He also knew he was saving his daughter's life.
The surgeries went as scheduled lasting just about the amount of time they said they would. The sweetest words you can hear after the recipient's surgery is that the kidney worked and they are peeing. This was the case for Beck... and I was grateful! The longest time was waiting for Beck and Dad to be moved from recovery to the transplant floor... but we'd been warned that could take time. Both looked tired and sore. Dad felt pretty sore the next two days... thinking he'd feel like that for a month. Then on day 3, after a shower, he felt 95% better. Hospital beds don't really allow you to rest like your own bed at home. Dad was released on Sunday and took one Vicoidin that first night.
Beck looked amazing the next morning! She could see the difference and color coming back to her skin. Her bladder got lazy so she was sent home on Monday with the catheter. Her 5 year old loved telling people that, "Mom had her pee on her leg (in a bag)." On the next visit to the clinic the catheter was removed and all was well. Regular labs and visits to the clinic are now life's routine. Beck lives in the valley about 2 hours away from San Francisco. Her clinic visits often include overnight visits with us.
What is next? Well, after 6 months of healing Beck will be reactivated on the pancreas list this March. She has not lost any time and her original wait was 1 to 1 1/2 years. The one year mark is this February 13th. Beck has planned a Valentine's get-away cruise before the next surgery. Beck was diagnosed with Type 1 diabetes at age 10. The thought of no insulin, no shots, and less worry is amazing. Of course there will always be the anti-rejection meds and labs.... but a small price for a precious, healthy life!
hugs and love, beck’s mom (Kathy)
Here's a little information about me. I'm average. I'm a regular guy working a regular white collar job making a little above the median income for the United States. I live in a middle class neighborhood where my kids attend public schools. I've been married for 20 years with three children 18 and younger. As a Christian I believe in The Golden Rule: do unto others as you would have them do unto you. I'm very physically active.
In November 2006 I went to my state's donor registry and began reading anything and everything on living kidney donation. It listed a very clear step-by-step process of how to become a living donor. I sent off an email expressing my wishes and was soon contacted by a counselor who wanted to meet me in person. At this meeting the counselor wanted to know why I wanted to do this and if I understood the donation process. When she was satisfied with my answers I was referred to the live organ donor coordinator with a state university who would become my primary contact for the next several months of testing and evaluation. This included complete medical and social history forms, medical and psychological evaluations and lots of blood tests.
At about this time I brought my wife into the discussion and shared my intentions. She had some good questions I was able to answer, and some I could not. The surgery, though very successful, is not completely without risks. But I face a greater risk driving to work on the freeway every day than the risk involved with donating a kidney. Indeed there are many risks I took and continue to take every day. Life is not without such risks.
In early September, 2007 I officially scheduled the surgery date of October 5, 2007. It all came down to this date. Leading up to the actual surgery there was some final labs to be done the week before which consisted of more urine collection (by the gallon!) and blood samples. I also had one last meeting with the surgeon which my wife attended with me. This was a decision with absolute clarity.
We awoke at 4:30 a.m. to get ready and make the forty minute drive to the hospital. My wife, twelve-year-old son and I made the trip. We arrived right on time at 6:00 a.m. and were led to a surgery prep room. I was given the usual hospital gown that ties down the back and told to remove all clothing, jewelry, etc. After a brief wait nurses, doctors and surgeons began flooding the room. Each one had a form to sign or a needle to stick in me. They even had me use a blue magic marker to write on the left side of my stomach which kidney to take; again, more comforting laughter. The anesthesiologist again appeared and stuck a syringe in the IV line and said, "This will help you relax."
Four days post-op
It was tough; two, inch-long incisions about three inches apart at my waist line and one four-inch vertical incision around my navel to extract the kidney. It all went as expected with no complications or problems. The donated kidney began working immediately and the recipient was making progress as well. By the second day (Saturday) the catheter was gone and by the third day the IV lines started coming out. By day four I was taking Tylenol for pain and ready to go home. My movements were slow and at times exhausting but with each passing day the pain diminished and I could move a little faster.
Twelve days post-op
Twelve days after the surgery my wife and I met the young lady that got my kidney. We had a wonderful visit with her, her mother and her husband. We laughed and we cried. It was a beautiful moment together. I left her room knowing I would do it again.
Two months post-op
What a journey! I feel absolutely the same as before donating. No pain, no discomfort, no lack of energy – 100 percent! Even the scars are fading nicely. The last blood and urine tests revealed a creatinine level of 1.0 (compared to .8 pre-op and 1.2 one day post-op). I'm scheduled for three, six and twelve month blood and urine tests to verify my lone kidney is functioning properly. After that it's once a year for at least five years.
The donated kidney has functioned perfectly for the recipient and all her labs have been very normal. No more daily dialysis, no more dietary limitations and most of all hope – hope for a normal and long-lived life. It has been a remarkable journey for both of us.
Six months later
Life has continued as before. I've suffered no physical complications as a result of donating a kidney. The scars continue to fade to the point that unless someone was actively looking I don't think they would even notice. I sleep well, eat well and continue living an active lifestyle which includes hiking, backpacking and lots of gardening. The postoperative labs taken at three and six months have been very favorable with everything returning to preoperative levels. I've climbed back in the saddle with regular blood donation with no ill effects.
One year later
Everything is as good as ever. All the labs and blood work indicate my body has resumed normal function and has suffered no ill effects from the donation. Meanwhile the recipient has also resumed a normal life with only a minimal dose of immunosuppressant drugs. In her words she's, "normal."
A couple months from transplantation, the recipient began studying for entrance exams to medical school. Last month she was accepted. She will be specializing in kidney research.
Over the past year I have been prompted to be more outspoken about my experience. I contacted the transplant clinic at the university where I donated and let them know I was willing to visit with anyone who is thinking of donating. I posted a short version of my story on the National Kidney Foundation web site and have been a part of a couple of email discussions and forums about organ donation.
I very intentionally left out the spiritual aspect of the decision to donate a kidney. I did so because believing as I believe was not a condition the recipient had to meet.
Having said this I will state here that my faith and Heavenly Father's blessings upon my life is why I did this – The Golden Rule, as stated in the very first paragraph. It's a faith I've known since birth and a life so blessed I have enough and to spare. There were times when I was confronted with very cold facts such as the risks involved with surgery and mortality rates as they related to kidney donation. None of those facts were able to subdue the gentle whisper that left me always with peace and a calm assurance to keep moving forward and all would be well. I never knew why or for that matter who – only that it needed to be done and I was the one to do it.
Jesus Christ is the perfect example in all of this. His life, his teachings are a model for all to follow both in terms of enduring trials and serving one another. I know that He lives and is the Savior to all people. The heavens are not closed and God still speaks to his children if we will but listen and as we listen so are we blessed.
June 10, 2006 my brother Anthony hasn’t been feeling well and today the doctor told him his liver function tests were abnormal. After numerous tests and a few brief hospital stays the doctors at Roger Williams Medical Center stated that he was in end stage liver disease brought on by the Hepatitis C virus and there wasn’t anymore they could really do for him, time was limited. My Mom would not accept that and arranged for a second opinion in Boston at Beth Israel Deaconess Hospital on Sept 11, 2006. The result of that visit led to the eventual listing of Anthony on the transplant list.
October 2006 I approached Anthony and my parents about the possibility of the adult living donor transplant programs that I had been researching in New England. Immediately my brother said "No". He refused to put me at any risk as a result of his disease and my parents agreed. This frustrated me greatly because nobody would even look at the information I was trying to provide or talk about the possibility in the future.
Anthony continued to get sicker resulting in numerous hospitalizations. He encountered many infections, ascites, seizures, and as time passed the ammonia levels in his brain caused so much confusion that the Anthony I know and love wasn’t able to interact with us most of the time. He was wasting away before our eyes. Mom & Dad did everything to try to get nutrition into him and their lives revolved around caring for their 39 year old son. As a parent myself I discovered a whole different respect for my parents. They pulled together and selflessly attended to Anthony’s every need.
From the time he was listed only one call was received about a potential donor on March 17, 2007 during a snowstorm and unfortunately that didn’t work out. I again offered and was shot down about the living donor transplant program. I felt that this was God’s plan for us but nobody else was ready to accept that possibility.
July 30, 2007 my brother has agreed to explore the living donor program at Lahey Clinic in Burlington, MA!! Mom called to have his records sent from BI for review to determine if he is a candidate for the program. August 15, 2007 Anthony has been accepted as a candidate!
Mom & I are going for preliminary labs and blood typing to determine if either of us are potential candidates for donation. Mom has an incompatible blood type but mine is compatible. October 6, 2007 my CT scan showed that I have enough volume to donate to Anthony! Next step is a consult with surgeon, physical, more labs, chest x-ray, social worker, psychiatrist and financial counselor. All tests and appointments were passed and surgery has been scheduled for November 19, 2007. Finally a light at the end of the tunnel!
November 19, 2007- new life begins. Anthony and I went into surgery at 8:00 a.m. About 9 hours later my brother had 58% of my liver. He went back into surgery the next morning so that Dr. Pomposelli could finish a few connections and look at how the liver was beginning to function.
The nurses had me out of bed and in a chair later in the day on November 19th and the following day I began to walk around in the halls- just a few yards at first but by the end of the day we were walking short halls. My pain was managed fairly well and each day they removed an IV, a line, the epidural, the foley catheter and the drain that extended out of my liver to a bulb outside my abdominal area. Dr Pomfret said I went through surgery wonderfully and was progressing according to schedule. I didn’t have much of an appetite in the hospital due to nausea but the day I came home I ate 2 McDonald’s cheeseburgers and an order of fries! I stopped taking pain medication during the day when I came home and about 3 nights later stopped taking the narcotics altogether.
I will honestly say that I felt great and then 1 week after coming home I spiked a fever and felt like my insides were ripping open. Surprise, surprise the CT scan showed that my bowels were slowly functioning and that all the pain was from an entirely "backed up" digestive system. That was the worst pain of the whole experience and once that got rectified I started feeling better and stronger each day.
Anthony was so ill having declined rapidly in the 2 months preceding surgery that he stayed intubated and sedated in the PACU for one week. He got moved to the liver floor the day I was discharged.
His recovery time has been much slower and he has experienced problems with vomiting, infection, hallucinations- mainly from the steroids and anti-rejection medications- but also in part due to the graft trying to do it’s job and survive being so small in such a sick body. I write this December 18, 2007 and although my brother remains hospitalized, he is with us and he is healing. The surgeons and doctors at Lahey have assured my family that the liver is functioning and slowly growing, that his labs are improving daily and that he is on his way.
Although we are not out of the woods yet, Anthony’s eyes are bright white and his skin is no longer jaundiced. He looked healthier in that respect about 48 hours after surgery. It is incredible that a little more than ½ an organ is able to do that in such a short time.
I never had a thought of "maybe I shouldn’t do this or why am I taking this chance". There are risks with everything and this is one I was prepared to take. I put it in God’s hands and he kept us both safe as I knew he would. Living organ donation may not be for everyone and that is fine but for those of us who it is for- I attest that there is no greater feeling in the world than to see the whites of a loved one’s eyes and know that you have given that person and the entire family a new beginning.
I will venture to say that this experience has changed me in little ways. I discovered we have a circle of support that is far reaching. I learned that God is present in more people’s lives than we realize and that people ARE compassionate, caring and willing to help. The best I can say is that Christmas holds an entirely different meaning for me now and I pray that the way I feel today stays with me for the rest of my life!!
August 13, 2008. Anthony passed from our hands to the Lords. He fought very hard to gain strength and recover to enjoy his “new liver” but it was not meant to be. Anthony’s family is forever grateful for the opportunity afforded to him by the living transplant program and continue to be active in promoting and educating the public about organ donation and living donor transplantation. We as a family will continue in memory and honor of Anthony’s name.
A God-Given Opportunity
In October of 1999 my Father had a
massive aneurysm and passed away after lying unconscious
for 6 days. My brothers and sisters and I stayed at the
hospital as much as we could, hoping for a miracle, but
it didn't happen. I kept thinking during this time that
my youngest brother, Michael, looked terribly tired, but
I attributed that to the fact that he was losing his Dad
and also his very best friend. We got through it. After
Christmas that year, my older brother called me to say
that Michael was nearing the need for dialysis and also
that during that time our father was ill, his kidney
function was down to 15% but he didn't tell us because
he did not want to add to our grief and worry. I tell
this story to let you know what a truly selfless person
Michael is. I have never known him not to put the
well-being of others first.
Of course I was upset, but nobody
mentioned transplant. In January he began Dialysis. He
did not do well. His blood pressure would drop
dangerously low after every session and he was always so
tired that he couldn't do anything that he was able to
do before. He experienced tremors where his wife would
have to hold him until he stopped and she would get up
in the middle of the night and send me emails telling me
how scared she was that we were going to lose Michael
and how she just couldn't live without him. After a
couple on months, Lindy called me and said, "Michael
needs a kidney and I'm asking whatever family members
can to be tested." Of course I immediately volunteered
to be tested but did not have much hope that I would be
a match, being 52 years old at the time, slightly
overweight and a smoker. Michael was dead, flat against
it. He insisted that he would not put me in danger to
save himself. I ignored him. In May of that year (2000),
I found out I was a match and flew from Philadelphia to
Atlanta and went to Piedmont Hospital overnight for
extensive testing. Amazingly, I passed with flying
colors. They did tell me that I would have to have the
"Open" surgery and that they would have to take my right
kidney instead of my left. (I guess they usually take
the left kidney??) Anyway, mine was all backwards and
taking my left one was too complicated. And all of a
sudden it hit me...me, who never even had a
broken bone or any kind of surgery...was going to
be cut from stem to stern...scared? Oh yeah. Too scared?
A couple of months passed and Michael
was fighting other health problems that were delaying
the surgery. Diabetes is such a terrible disease. He had
lost his toes on one foot, actually half of his foot,
several years ago when he stepped on a nail while on
vacation. The infection would never heal, nor would the
wound close. They amputated that part of his foot and he
had to adjust to a special shoe, which caused another
sore on the remaining part of the foot that would not
heal. They would not allow him to have the transplant
with any open wounds. We prayed and prayed because he
was failing fast. Finally, he was cleared for the
surgery. The doctors wanted to put it off until
September due to scheduling. My nerves were already shot
so I called them and said, "No, we have to do this
now...as soon as possible...please!" So, the
surgeons double-scheduled on August 8. They did one in
the morning and us in the afternoon. They took him down
first to the pre-op and then me. Before I knew it I was
waking up in the recovery room, very groggy but no pain.
They had given me a block and I'll tell you, it's the
only way to go. I got some good rest those first 24
hours. Michael was in surgery for 12 hours. They have
major problems getting the kidney to work, something
about the veins or arteries being too short and they
almost lost the kidney after the third try. Then my
surgeon went in and the put an artificial passageway in
and the kidney worked.
I will not tell you that it didn't
hurt, because it did after all the medication wore off.
Michael was almost running up and down the hall before I
could get up from the bed. His color was back the day
after surgery, along with a smile that would melt your
heart. It lessened my pain. After 11 days they left me
come home to Philly. Leaving him was the most emotional
thing I have ever experienced. As we were saying
goodbye, he began to sob and hugged me so hard. I was
crying, my fiancé was crying, everybody was crying. Then
he said "Thank you for saving my life". I didn't know
what to say and I needed to lighten up so I just
said..."Aw...it was nuttin' buddy". I got home and spent
the next six weeks on the couch. I have to say that it
took me a good year to feel really normal again and I
still, from time to time, (especially when it rains)
have some pain. They tell me its scar tissue. All my
labs have been great. It's been two years now and
Michael has never had any rejection. Except for fighting
the diabetes and his insulin resistance, he is living a
In October of 2000, I married my
husband, Alan. I wanted Mike to be there and to do a
reading at the wedding. He did. He came, he danced "The
Boot Scootin' Boogie" at the reception with all my
friends gathered round him. It was so wonderful. It made
our wedding day so special. I was still quite swollen
and sore but no one knew.
I think the waiting for the transplant
to happen was the hardest part. I was nervous and
getting advice from everywhere. Some people said I was
nuts to do it at my age, other people called me a hero.
My dearest friends, Sue and Babe, came to see me the
night before Alan and I flew out to Atlanta. Babe took
me outside and gave his medal for courage from Viet Nam.
He said it kept him safe there for 18 months and it
would keep me safe too. I cried.
The best part is knowing that I was
chosen by whatever higher power you know him as, (I call
him God), to help another human being to live a longer
and better life. I could never be given a better gift.
My story really starts with my dad.
Before being diagnosed with Lupus SLE, he had other
health issues such as cancer 3 different times in his
20’s and 30’s. In 1987 he went for a routine eye exam
and the doctor saw something that they felt needed to be
seen by a specialist. He was sent to a rheumatologist
(if my memory serves me right) and found he had Lupus.
He has had many health problems due to this disease:
strokes, heart problems, to name a few. Over the years,
his kidneys continued to fail. In approximately 1998, he
was in and out of the hospital many times with various
problems, some being congestive heart failure and total
kidney failure. He began dialysis in December 1998. He
continued on dialysis, but suffered a heart attack while
on the dialysis machine. This is when he began to think
of a transplant. In June of 1999, my mom asked me to go
to Chicago with her while dad was evaluated for a
transplant. The surgeon asked us all 3 to come in. He
wanted us all to be aware of the risks and the options.
After quite a long session, he asked if either of us
were considering being tested as living donors.
Honestly, I had never thought of it and really not heard
much about it. We both said we would be tested.
After many vials of blood
drawn—and about a week—we met again with the doctor. We
were both compatible. Now we needed to decide who would
continue with the testing. Mom really wanted to be the
one to do this for her husband, but in the end, we
decided, since I am blood related and younger, perhaps
his best chance would be with me. Looking back...I
cannot even imagine them both being laid up after
In the next 6 months, I went through
much testing and bloodwork. Most were painless and just
time consuming. In October, the surgeon did a complete
physical on me and asked if I had varicose veins. I said
yes. He looked at them and ordered an ultra sound to
make sure I had no blood clots. I had this done and my
family doctor called and said he needed to see me as
soon as possible, because they found something abnormal
with the ultrasound. I went in and they said they wanted
to do an MRI. The results came back and I was told it
was nothing to worry about. So, after that roadblock,
everything else went pretty smooth. A week before
Thanksgiving was my last day of work. This is when it
really started to hit me, the magnitude of what I was
doing. I began to get a little nervous...the time was
fast approaching. On Nov. 29th, we headed for Chicago.
Our surgeries would take place at Rush Presbyterian-St.
Luke's Hospital by Dr. Merkel. He would be doing both
surgeries. I remember telling him I did not want
students operating on me...he assured me they would only
be assisting and he would be doing both procedures. We
both had tests to be done the following morning. Dad
would be admitted the day prior to the surgery and
receive his last dialysis treatment.
The morning of November 30th I had a
chest x-ray, blood draw, urine tests, and the last test,
my spiral CT scan. This took about half an hour and was
very uncomfortable to me. They told me the dye would be
warm. Hot is a better word.... very hot. The testing
done, I went up to see dad for the last time before
surgery. I thought I would see him the following morning
but I did not. That evening in my hotel room, I had a
horrible headache and began to feel sick to my stomach.
Looking back, I know it was nerves...as the reality was
really setting in. I was up most of the night.
December 1, 1999. I arrived at 5:30 to admitting. I was
later called to ambulatory surgery. They told me this is
where I had to say goodbye...I thought I would be able
to at least have my husband with me till I went into
surgery. We all prayed together and off I went. I
dressed for surgery and the nurse took my vitals...I
told her she better make sure I was ok because I was
sick last night...they must have been used to that
story, because she was not real concerned. After a short
time, they took a few of us up to the pre-op room. I was
there for a while before the "happy guys" came in with
my epidural. This did not hurt to be put in, but I will
be totally honest...it did not work well for pain
management for me at all. The last thing I remember was
looking at the lights in the ceiling on the way to
I woke up feeling extremely sick to my
stomach. This got better as the week went on, but I
always felt nauseated to some degree during my stay.
My surgery lasted longer than it should
have. When the surgeon opened, he found I had a vein
that was wrapped around my artery and had to be
untangled. The surgeon took a lunch break before doing
the surgery on my dad. They made sure I was stable and
in recovery and only then was my dad taken to surgery.
My kidney began functioning in my dad as soon as it was
I had the open procedure so I had quite
an incision: 11 inches. The epidural was not working. I
had the pain management team up to my room often. The
finally told me they could not raise the dose anymore.
So I had them remove the epidural and I went with
Morphine and the Vicodin. We were both in the hospital
for 7 days. They gave us rooms at opposite ends of the
hallway so we would have to walk to see each other. Oh,
how painful those first few days of walking and bathing
were. My strength was gone and it took everything I had
just to sit up and bathe for the first few days. Each
day found my strength returning slowly. It took a good 6
months before I was really feeling close to normal
January 19, 2000 I returned to work
very part time and slowly got back to my normal
schedule. It has been 2½ years since I donated and we
are both doing well. Dad has had no setbacks or problems
with his new kidney at all. We give God the glory for
that. I know so many people have many problems after TX.
I have been asked how this changed my
life or my outlook on life. I honestly do not feel a
whole lot different about it. My dad needed a kidney and
I was healthy and able to give him one. I do not feel
like a hero or feel I was brave...although many have
said this to me. I feel uncomfortable when called these
things. I was scared but knew God would bring us both
through. Now, 2 years later, I can say, “I would do it
My Summer Vacation
of an Organ Donor
Last January, we received an email from
my cousin Helene informing us that she had been placed
on a waiting list to have a kidney transplant at Mayo
Clinic. When I first read the message, I looked at it as
troubling family news, but it didn’t dawn on me that I
could do anything about it.
However, my wife, Caroline, made the
comment that I might be a possible match for Helene’s
transplant. I am probably one of the last people who
would willingly go into surgery if there were another
option, but this was different. When she made that
suggestion, I knew God wanted me to be screened as a
I have tried for years with varying
degrees of success to live my life following the
Biblical principles of “humility," “love" and “seeing
others as more important than myself" as presented in
Phillippians 2:1-7, always falling far short of this
standard. I focus on God’s guidance in these words very
often and sincerely believe my decision to volunteer for
screening, as a donor was a response of obedience as
these words came to mind upon hearing the suggestion. I
never doubted that following God’s will could only be
good whatever the results.
Unexpectedly, after beginning the
screening process I found myself anticipating good
things other people would think of me. I knew this was a
self-seeking attitude, but admiration is very
gratifying. Early in the process before I communicated
with anyone other than Caroline, I confessed and asked
God to give me concern for his glory and reputation
rather than my own. I know those prayers were answered,
because it progressively became more difficult to tell
others what I was doing. I was able to look at this
donation as an opportunity to serve someone who needed a
kidney more than I did.
I contacted Helene and submitted blood
samples to Mayo clinic for matching. We soon knew that
Helene and I were a good match for blood type and tissue
typing factors. However, before we could pursue other
screening procedures, we were notified that a kidney
match from the victim of a massive stroke had been
found. Helene had received her transplant. I was at the
same time relieved and disappointed.
When Helene returned to Mayo for her
one year follow-up visit, the doctors discovered the
transplanted kidney was failing. She was down to around
15% kidney function and was being evaluated as a
candidate for another transplant. I knew immediately The
Lord wanted me to resume donor screening and I arranged
for the tests that could be done here in Birmingham. I
passed with flying colors and was cleared to go to Mayo
Clinic on Tuesday, May 29th, for final screening. They
told me there was a high probability the transplant
would take place on Friday, June 1st.
Once we had a target date, the surgery
was constantly on my mind, yet never with the slightest
dread or regret. God gave me perfect peace about the
process. I even acknowledged to myself the unlikely
possibility that I could die in the process. I was quite
willing to rest my life in God’s hands. I told Helene
that Mayo had never lost a kidney donor, but I was
prepared to be the first. I wanted her to hear it from
my lips so if I did die, she would remember. Despite my
peace about the process, Caroline was becoming
apprehensive as my departure approached.
During this time, I became very
conscious of God’s presence. The scriptures came alive
to me and were fascinating. I was inspired to be open to
God’s will instead of my own, and to plea for God’s
involvement in my own life. I prayed this way many
times, as I still do, but now my prayers had a stronger
faith and expectation than ever before. There were times
when I wanted to hurry the process; but now I am glad
nothing shortened this time of drawing closer to
I arrived in Rochester the evening of
Sunday, May 27th, a day before my first appointment. I
had been told to collect a 24-hour urine output to take
in with me on Tuesday. We thought it would be easier to
collect this in Rochester than during or before travel;
so I had Monday the 28th by myself in Rochester. I spent
the day with God exploring a new town and experiencing
His presence, all the time with my collection jug hidden
away in my bag. That night I dreamed something happened
to the urine specimen and I couldn’t deliver it the next
morning. In my dreams I either spilled or contaminated
the sample, or I forgot to do it in the jug. However, I
proudly delivered the correctly collected specimen the
Tuesday morning when I checked in at
the Nephrology center at Mayo Clinic I was given a
6-page list of appointments and instructions for the
next 3 days. I felt like I was given every test they
could think of. They were very serious about checking me
for any possible medical problem. These days were
stressful and at times I felt humbled and uncomfortable.
I have never before experienced other people knowing the
details of my body and it’s functions to this degree. On
the other hand I was being seen by a host of healthcare
professionals who consistently demonstrated great care
and compassion, and I was having the most thorough
physical I had ever had. As that week progressed my
emotions were stronger than ever.
On Tuesday afternoon I had a Transplant
Education class. It consisted of a quick overview of the
entire process with emphasis on the surgical procedures.
This was taught by Lynette Fix, the transplant
coordinator with whom I had talked and exchanged email
for months. It was a pleasure to finally meet her
face-to-face. There were two of us in the class, Robyn
Oland and myself, both there to donate a kidney to a
cousin. We discovered we had much more in common,
including our Christian faith. Our friendship throughout
the procedure was one of the special blessings I
My surgery was performed by Dr. Mikel
Prieto, originally from Spain. Dr. Prieto developed the
donor surgical procedure they use at Mayo, the
hand-assisted laparoscopic technique, in which the
surgeon inserts his hand into an incision in the abdomen
to assist the laparoscopic devices. I was fortunate to
have this procedure, since generally, recovery from
laparoscopic donation surgery is easier than from the
old full opening technique.
On Wednesday afternoon I left the
transplant center in the early afternoon. Helene was due
to arrive, and I was able to meet her in the hotel lobby
as she arrived. Although she looked weak and tired and
her skin color was unnatural, she was in great spirits.
I helped get her luggage to her room where we had a
wonderfully honest and at times tearful talk about our
concerns for each other. She and I had each completely
given our own well-being over to God. Our unity of
spirit was confirmed when I heard Helene use the same
words I had used in prayer just a few hours earlier, “…
just along for the ride." and “… waiting to see what God
is going to do." Realizing our mutual trust in The
Lord’s care was so encouraging, that we were even able
to laugh together about the details of the tests and
surgery over dinner.
Thursday morning, Helene and I both
started out at 7:00 for more blood samples and a full
day of tests and consultations. My evaluation as a donor
was being overseen by Dr. Jorg Velosa, a gracious caring
gentleman originally from Columbia. We had met on
Tuesday when He found me acceptable as a donor pending
the outcome of the remaining test results. He had talked
with me about the commitment to donate a kidney and the
impact a new kidney would have for the recipient as well
as the risk and investment on the part of the donor.
Thursday afternoon He wanted to make sure I had all my
questions answered after which he said we had a green
light for surgery Friday morning. I was overwhelmed by
the quality of attention and compassion shown to me, not
only by Dr. Velosa, but also everyone on the Mayo
Caroline arrived that afternoon around
4:00. I swept her off to Mayo to meet Lynette, who
stayed late to answer her questions about the surgery,
which helped calm her fears. Then I gave her a quick
tour of the hospital that would be home for a couple of
days. We walked back to the hotel, unpacked, and had a
Early the next morning I received a
phone call from my dear friend and pastor Ken Wilson. We
prayed over the phone in what he called “a pre-launch
prayer." It was always a blessing to hear from a friend
and my recuperation was highlighted with expressions of
love and concern from many friends and family.
Helene and I with our families all rode
together to the hospital on the shuttle bus. Helene and
her group went one way and I went another with my
entourage. I was checked in and given a last cursory
physical. I had to state my name, birthdate and
procedure over and over that morning as I encountered
each staff member, a precaution against error on the
hospital’s part. Again everyone, the nurses, the aid who
prepped me for surgery and the O.R. team, went out of
the way to show me true concern. While I waited to go
into the O.R., I lay there thinking over the whole thing
with tears in my eyes from the joy of being used by God
to serve another so deeply.
After the surgery I was pretty doped up
and don’t remember much except that I was able to wave
feebly to my family as I was wheeled out of recovery and
past the waiting room on the way to my room. Also I had
more tubes attached to me than I had expected. My one
meal of the day was a Popsicle late that evening.
In the morning after my catheter and
one IV were removed, I showered and walked slowly down
the hall to visit Helene. I was thrilled upon entering
her room to see a face that had lost years of age and
regained a healthy color. It was obvious from looking at
her that her new kidney was doing its work. Helene was
excited to observe how clearly she could think again. We
rejoiced together, she thanking God for my condition and
I for hers, “each considering the other more important
Later that night alone in my hospital
room, I suddenly had the physical sense that something
was missing from my body. I never expected to actually
feel an internal organ was gone, but I could actually
feel something was missing. Robyn told me she had also
had a similar experience.
I was released early Sunday afternoon
and left the unit on my own feet. By God’s grace, I had
walked in, even walked down to pre-op, and walked out
all without the usual hospital wheelchair. Sunday night
Caroline and I ate delicious hamburgers at the
I have a 3½ inch vertical incision
going down from my belly button and two much smaller
incisions in my side below the rib cage. I had one other
very small hole in my side that only required a Band-Aid
and was healed within a few days. The three smaller
openings were for the optical device, the remote control
device and the tube used for gas to temporarily inflate
my abdomen during surgery. I experienced depression for
a few weeks after surgery, a normal side effect, and
found the best way for me to cope with this was extra
sleep. In spite of this I continue to see God’s love and
goodness to me.
Helene has done very well. She
consistently tests very well and has continued to have
her medications and lab tests reduced. I believe my
kidney donation had impacted the life of not only my
cousin but also her family in a quite significant way.
Her grandkids have their Grandma back, Tom has a well
wife, and Helene can look forward to a more normal
lifespan. I am truly thankful to God for using me as a
resource in His healing power for her.
Looking back, I realize donating that
kidney was one of the most enriching experiences of my
life. Even though it was very humbling to undergo much
that was beyond my control, I was strengthened beyond my
limitations. I experienced a depth of love and joy that
comes only with sacrificial giving. This has given me
new respect and love for those people God brings into my
life. Each individual deserves and needs my love and
esteem. I know now I have the capacity to provide that
kind of care if I am simply willing to give of myself.
With God’s grace, We can all discover a rich life that
transcends ourselves when we are open to God’s perfect
Everyone always wants to know “Why?"
Why would I want to donate a kidney to a stranger. I
say, "Why not?" I read an article in a women’s fitness
magazine about a lady that donated her kidney to a
stranger. That day I said, “I am going to do that." I
was surprised that I did not know that this was
possible. I figured I would be able to donate with no
problems, anywhere I wished. I was hoping to donate
close to home. I knew I was physically and emotionally
healthy. What could stop me ?
I have worked in hospitals for 20 of my
38 years. I have seen my share of dialysis patients.
Surely, dialysis has become better over the years, but
it is still dialysis. I know if I had renal failure I
would want a transplant if that were an option for me. I
don’t have time to go to dialysis. I don’t like to watch
TV and I don’t like to sit much.
I can’t exactly remember what happened
next, but I told a few people that completely freaked
out! They actually thought I was completely nuts and
one went so far as to actually talk to my parents about
it. I figured my mom, a RN, would have been as excited
as I was so I wasn’t worried about it. Again, I was
shocked when she was did not support me at all. I also
told some co-workers at the hospital where I worked.
They all kind of rolled their eyes. Doctors I have a
daily working relationship with did not encourage me
So I started my research on the
internet. I did a search and found USC’s transplantation
home page. I emailed a coordinator there. I just said “I
would like to donate a kidney to anyone in need. Please
contact me." It seemed like forever to get them to
respond. Eventually I sent them my medical records upon
their request. Meanwhile, I also found the University of
Minnesota’s website. They did non-directed donations and
they talked about it. USC could never give me a straight
answer if they actually did non-directed donations.
Eventually USC rejected me due to a urologic procedure I
had done at 6 years of age. They telephoned me and it
was all a blur, but somewhere in there I heard the words
“it is very generous of you, but…" Of course I was very
discouraged. I had asked a urologist about my past
procedure and he said he felt it was a “non-issue."
The U. of Minn. was very helpful. They
didn’t treat me like a nut and they actually returned
emails and telephone calls. I told them what USC had
said and they said they would evaluate me themselves. I
would never want to donate if it could have some
potential negative outcome on me. I knew they would not
take my kidney if it were not safe for me. The health of
the donor is the most important thing. They sent me out
a packet of info after giving me a health questionnaire
over the phone. Included were a lot of articles that
pertained to kidney donation and an extensive health
history to complete. I read everything and sent the
questionnaire back. Eventually they sent me a letter and
told me to have a history and physical with my personal
physician and to get a number of lab tests done, “if I
was still interested." They paid for the testing. Since
I lived in California it was not possible for me to see
their physicians for the initial physical and testing.
Once they got the results they invited me back to
Minnesota for a full day of testing. It was an
adventure. I saw the Head of Transplantation, two
nephrologists, a social worker and a psychologist. I had
to take a personality test that had about 560 questions.
I had about 20+ vials of blood drawn and then an x-ray
study of my kidneys. I watched a video for donors. My
day was from 7 AM until 5:30 PM. My flight was due to
leave about 7 PM. It was a very stressful but awesome
day. I hoped all the tests were okay and that I had made
a good impression. I was myself, and that all is that
they ask for.
It seemed like forever for them to
contact me with their decision. They said it would be
about 2 weeks. Waiting is hard. I looked for news
everyday. I emailed the coordinator a few times, but I
tried not to be a pest. Eventually I got word that “you
can donate, if you still want to." Still want to!
So a recipient was chosen sometime over the next month
and a surgery date eventually set. I ended up donating
about 10 months after I started my journey to
Again, I flew 1,300 miles. I had two
friends accompany me and another acquaintance (and now
friend) drive up from Tennessee to be there with me. The
angiogram was a piece of cake. The lying flat with your
leg straight for 6 hours post was not so easy.
Bedpans are no fun and I ended up on one about 4 times.
Thank God I only had to urinate. The surgery was much
more painful than I anticipated. I know all surgery
hurts, but I was not expecting that amount of pain. I
was in the hospital for 5 days. I had the hand-assisted
laparoscopic procedure. My surgery was 6 hours.
My intestines gave me a lot of trouble
post-op. I could not pass gas for about one month
without a suppository. All my pain seemed to be related
to intestinal gas. Only one of the 4 incisions was
tender and they all healed fine. My intestinal problems
lingered for some time. I had to go back for numerous
doctor visits due to pain and intestinal non-function. I
was off work for 8 weeks all due to my crazy intestines.
Now, 4½ months later, they do not work like before, but
I am thankful they work at all. I will take anything at
this point. I have taken every laxative known to man. It
is quite an embarrassing problem to have.
Life after donation is different
somehow. Everyone wants to know if I met my recipient,
but I did not. I was much more curious about them before
the surgery. Now after surgery, I seldom think of them.
I can only hope for the best and know that I did what
was right for me. Hopefully it will give them a
different and perhaps better life. I can ask the
transplant center how they are doing anytime I wish and
they will let me know. I did receive a letter from the
recipient and know it went to someone who suffered
greatly for many years. My weeks of discomfort were
nothing compared to all that they have been through in
their short life. I have no regrets. I would do it all
Anything is possible! I am a mom of 5
boys, aged 23, 21, 5, 4, and 21 months.
When I became pregnant with my fifth
son, I began to notice my sister-in-law (my husband’s
brother’s wife) becoming increasingly tired, "worn-out",
always itching, and getting kind of a yellow cast to her
skin. But as I came to discover it was more than just
tired: she had life-threatening liver disease and needed
a liver transplant. She has seven children of her own,
and at the time all I could do was pray for her. She was
put on the transplant list and I gave birth to my son
all the while watching as she became more and more
After the birth my husband and I
learned that she was given only about 3 months to live.
I made up my mind that if I were compatible, I would
donate part of my liver to her. The doctors told me that
the baby needed to be at least 3 months old before I
would be considered, so we started testing.
At 46 years of age with the youngest
only 5 months, a 3 year old and a 4 year old, I was
approved for the transplant. Never in my life felt such
peace about any decision I have ever made, and went into
the operating room with serenity I have never
experienced before or since.
I will say there were times when I was
overwhelmed with things; there isn't much time for rest
with 3 little boys. I was told not to pick up my baby
for at least six weeks. My sister-in-law also had some
major hurdles to jump after the initial surgery, but 9
months to the day she and I went to Florida to
Should anyone reading this ever
consider donation, please take the time to look into
your heart. If becoming a living donor is not for you
then please consider doing it upon your passing. Let
your family know your wishes.
Just over a year and a half ago, I
donated my kidney to my cousin, Maureen. She is my
3rd cousin, and I didn't know her very well.
But knew through another cousin that the one kidney that
she had left was failing. 7 years ago, Maureen had two
kidneys and was told that she was in renal failure. She
lost use of one of her kidneys entirely and the other
one was on its way out. She was prepared to die. She
didn't tell many of our family members, but was
particularly close with our cousins Karen and Karen’s
sister Ilene. Karen decided to go get tested and found
out she was a match. She had an open nephrectomy and
aside from a few complications, Maureen's body took the
kidney well and, until recently, had been working
perfectly. Now, 7 years later, that kidney was beginning
to fail.Maureen did not want to go on dialysis
again, and was again prepared to die. My cousin Ilene
had told me about Maureen and I immediately went to go
get tested. I had never considered doing anything like
this before but felt that it was something I needed to
do. My family wasn't thrilled with the idea. We were not
particularly close with Maureen, but it didn't matter to
me. I would have given it to a stranger. Everyone can
live on one kidney. It's only a body part to me; to her,
it was her life. I got tested and tested and tested and
tested. I was not an exact match, but was told that
since we were the same blood type, the antigen match
could be corrected with meds.
The testing took about 6 months and for
me was the scariest part. Before all this I was afraid
of a blood test! Now, they took 16 vials of blood from
me and it was no sweat. The worst one was when they
injected some sort of dye into my blood and then took
x-rays of my bladder and kidneys to make sure everything
was functioning well. That one was awful. But, it was
over after a few minutes and I was told a few days later
that everything is fine. My laparoscopic nephrectomy was
set for May 24, 2001. I was not scared, but my mom was
petrified. We had to check into the hospital on the 23rd
and the surgery would be the following morning. My mom
slept on a cot next to my bed that night claiming to
help me stay calm, although it benefited her more than
me. I remember being awaken the next morning by the
nurse, telling me it was time for surgery. I told her
that I wanted a tape of the surgery (which I never did
get) and I am pretty sure that I called the
anesthesiologist my best friend. And, that's it. I was
When I woke up, I wasn't in too much
pain (lots of medication), and was happy that it was
over. The surgeon came in and told me that Maureen's
body took the kidney so well that it started working the
second it was put into her. He also told me that the
kidney that she had (Karen's kidney) had not yet
completely failed, so when they put my kidney into her,
it took the pressure off of hers and it was able to
continue working. So basically, she now has two
functioning kidneys, one is mine and the other is
Karen's. Truly amazing.
Today, we are both doing great. She
still has 2 working kidneys, and I still have just the
one. Aside from the 4 scars that I have, I can't feel a
difference in only having one kidney. I don't regret
donating for a second, and I would do it again if I
could. Anyone need part of a liver?)
Thanks for listening to my
This is a story of my wife Cathy, and
what transplant means to us. Cathy is very special; she
has been on both ends of the transplant story. I hope
that sharing our story helps other people.
It all started 14 years ago. Cathy's
brother David needed a kidney transplant. He is a
juvenile diabetic and the doctors thought that it was
time for his kidney. The whole family was tested to see
if they could donate to him, and Cathy matched. She
donated a kidney to him at the University of Wisconsin
Madison. Back then the medicines were not as good as
they are now, moon face and other side effects. The real
reason for the transplant wound up being a disease in
the family, focal glomerulonephritis, the same thing as
Alonso Morning and Sean Elliott.
Cathy was diagnosed a few years later
with the same disease as her brother. We kept it in
check for 7 years with diet control. In March 1997 Cathy
went into full renal failure. I remember it as if were ;
she woke up on Sunday morning and said she wanted to go
to the hospital. She was scheduled to see a new doctor
later that week, Dr. Ken Miller. He meet us at the
hospital and started to bring Cathy back to life. She
had her first dialysis that night and spent 6 days in
the hospital. Over the next few months she went from
hemo dialysis to peritoneal dialysis to being hooked up
on a night cycler for 9 hours a night. Slowly and surely
Cathy got stronger, thanks to Dr. Miller.
We started to look for hospitals to get
Cathy on a transplant list, University of Minnesota,
University of Wisconsin at Madison and Northwestern
Universirty. Dr. Miller did say that there was always a
possibility of family members donating to Cathy, and I
even asked if I could. When we visited the hospitals, I
was tested to see if I was a match for her. The results
came back that we matched in blood values and that our
bloods were not allergic to each other. With all the new
medicines that are available today we did not have to be
as closely matched as in the past. We then booked
November 13, 1997 for the transplant at Northwestern.
I went through testing to see if all
was OK with me and which kidney they would take. We were
very lucky with Northwestern; 3 weeks before the
transplant they did their first laparoscopic kidney
donation. I was a candidate for the new procedure and
was their 6th laparoscopic donation. Instead of having a
large 10-inch opening, I had a 2-inch opening and 4
small holes (they only needed a band-aid to close them).
The day before the transplant we did
all the pre testing and stayed at close to the hospital.
There was a small problem with Cathy: she had some fluid
in her lungs. That night they were able to remove the
fluid and did not have to postpone the operation.
I was taken down to surgery at 6 AM,
surgery started at 7. They kept Cathy informed on how I
was doing and took her down a few hours later. When my
surgery was finished, my kidney became Cathy's within a
few hours. The surgery went great for both Cathy and I,
Cathy was making urine right on the operating table. It
is amazing how many tubes are attached to you when you
Cathy—like all transplant patients—went
on many drugs right away. Instead of a lot of harmful
rejection medicines like her brother was on, she was put
on a clinical trial of a new rejection medicine. That
medicine, CellCept, is much stronger and not toxic to
the kidney as the old medicines were.
Because of the laparoscopic surgery,
the hospital stay was very short. The surgery was on a
Thursday; I came home on Saturday. They don't keep the
recipient in long either now; Cathy came home on Sunday.
Those next few weeks we visited the Northwestern clinic
about 3 times a week for blood draws to check on Cathy's
values and additional test medicines. It helped staying
at her mother's house for a few weeks after, we would
get up, drive downtown, see the doctors and drive back.
Taking care of someone is not really easy and my healing
at the same time did not help. We did go home 2 weeks
Cathy did have a rejection attempt but
it was caught very early. A visiting nurse treated her
at home for 2 weeks. After that things have been very
It has been 4 years since the
transplant and both of us are doing very good. The new
medicines that are available today are even better than
what Cathy is on. They are truly amazing, living donors
do not have to match as close as was needed 13 years
ago, and the surgical techniques are far better, meaning
less hospital stay afterwards.
There are some things that I am very
thankful for during this whole process.
- Dr. Miller is a great doctor. He took care of
Cathy when she really needed help and still takes very
good care of her. He is someone you can talk to on a
- Northwestern University. They did a great job with
both of us, especially Dr. Stuart and Dr. Leventhal.
The nurses are also great.
- The new medicines. Each day that goes by the
rejection medicines get better with less side effects.
There are even better ones on the way.
- Walt Disney World. When Cathy went into renal
failure we already planned a trip to WDW with the
sister and niece. We used WDW as a goal to get Cathy
well enough to go there just months afterwards. The
goal is not just for the patient but the whole family,
everyone goes through this together.
- Family. My Dad and sisters were there with us for
it all. Cathy's Mom and Dad are great, they helped us
get from day to day. Carla and Kirsten, the second
half of the Fab 4, our family, thank you.
- For someone to be on both sides of a transplant if
pretty special. I know Cathy didn't even need to be
asked to help her brother. I always knew that Cathy
was a very strong person but as every day goes by I am
awestruck by how she gets stronger every day. She
truly is my hero and I love her very much!
I hope this helps. You can contact us
at any time, we love to help by talking to others about
the transplant experience and answer any questions
My name is Marlee and I am 26 years old. I was diagnosed in March 2008 with IGA nephropathy. This is my story...
It was that time of year every female dreads…the yearly check-up with the gynecologist. I was already apprehensive and on top of that I had a new gynecologist I had to go see on January 4, 2008. Who would have ever thought that day would begin with a series of bad news.
The gynecologist asked me if I knew why my blood pressure was high and my first thought was, "What? I have high blood pressure!" I felt normal and my weight and diet was the same as it always had been. She though it was my birth control so I had to stop taking them even though I have been on them for years. I went back the following month on February the 1st, and the nurse checked my pressure again but I still continued to receive bad news, it was still HIGH!
The following week on the 6th, I was feeling awful with a head cold and could not get rid of a horrible cough so I went to see an internal medical doctor for the first time since elementary school. I never had a reason to see a medical doctor besides the gynecologist. At the visit, the doctor completed a wellness check up and ordered some blood work on me and gave me a prescription for antibiotics. Later that night about 7o'clock pm, my phone rang. To my surprise, it was the doctor. The lab results were in and she urgently advised me to see a nephrologist (kidney specialist) as soon as possible. She had an appointment already scheduled for me in the next 2 days.
On Friday, February the 8th, I went to see the nephrologist (kidney specialist) and who would have thought my life would change forever. Dr. J told me my kidneys were failing. I did not know what to think. That moment felt surreal. He ordered more blood work to be drawn and ran some tests but things were not looking any better. Then it happened, my first kidney biopsy on the 28th of that month. With all of the results in, I followed up with Dr. J in early March. I did not know what to expect. Was it good news or bad news? I just did not know.
As I sat there waiting in the small exam room on the thin paper sheet of the exam bed, he came in and sat down, turned to me and said I have chronic kidney disease called IgA-Nephropathy disease. I was shocked. Devastated, I just sat there in silence. Could this be? Dr. J went on and told me there was nothing he could do to try to reverse the damage that has been done to my kidneys. He told me I must have had this kidney disease since childhood and never knew it. I did not have any symptoms until now with the sign of my high blood pressure. This disease is a commonly slow progressing disease that ranges in stages of 1 (mild) to stage 5 (severe). I was already at a stage 4 with only 20% of both kidneys working. Who would have thought?
I was started on different kind of medications due to the disease to keep my kidneys from progressing for the worst. There was no cure. He told me I would need frequent blood draws to monitor my kidney function. So the following months, I did as I was told and I got blood work drawn. I thought things were going fine but unfortunately from April to May, my kidney function progressed rapidly for the worst. I was hospitalized on May 2nd and did not get discharged until eight days later. During my stay at the hospital, I had a second kidney biopsy done and it confirmed I was at the end stage of my disease. Dr. J. discussed with me that I would need a kidney transplant sooner than he had thought because of the sudden extreme change in my kidney function. I was now at the last stage of renal failure, stage 5. It was a bitter and sweet moment when Dr. J told me the news. I thought to myself, why and how could this ever happen to me? I am only 25 years old.
I had plans to travel with my sisters and parents. I even had a plan to try to have my own family this year with my husband. Being told I had kidney failure was not part of my life plan.
I never heard of IgA Nephropathy until now. I looked and felt healthy. I thought I was fine. No one in my family has it. I found out that IgA is a protein that causes damage overtime when it settles in the kidneys. IgA Nephropathy is typically a chronic kidney disorder to be monitored over years. It can occur at any age and is more common among Caucasians and Asians. However, it was too late when I found out I had the kidney disease to reverse any damage. Who would have thought I would have the kidney disease IgA nephropathy? I did not.
My doctor wanted to avoid dialysis for me but unfortunately, my kidneys were no longer working for me but against me. Dialysis is a process where a machine filters out the waste in my body the kidneys cannot. On May 27, 2008, I had a perm-catheter placed in my chest. This catheter is a narrow tube inserted into on of the veins near my heart and secured by a cuff under the skin. The catheter has two tubes joined together so waste in the blood can be taken out of one tube and filter clean blood through the other while I am on dialysis.
So it was time, May 29th was my first day at dialysis. I was very nervous and anxious because I did not know what to expect. Everything went well but I did find out that dialysis does drain me physically. I felt and still do feel very exhausted and tired when I leave. Once I get home all I want to do is sleep. I do not have the energy or strength to do the things I did before. Now, I still go to dialysis treatment three times a week for over 3 hours at a time. I have to depend on a machine to keep me living. When I think of the word "dialysis," I think of the old people. People's whose kidney’s fail naturally due to their age and disease process having uncontrolled diabetes and high blood pressure. I do not think of people like me, people who look completely young, strong and happy on the outside. Instead, people who are me are slowly dying from the inside out. I am the youngest patient at my dialysis center. Sometimes I still can not believe that
my life I am living is mine. Who would have thought?
I am not one who believes things happen for a reason. I have accepted this to be a "hurdle" in my life. It just takes time and patience. Of course, who would not be upset or angry to find out something like this can actually happen to them. I went through all of the emotions anyone can expect. I was very angry at first and questioning my life. Even though this is occurring right now, I know it will be okay because I have my twin sister, Marlay. We went through all the testing necessary and just waiting for a surgery date.
On October 9, 2008 my surgery day was here and my wish was granted. It was two days before our 26th birthday!! I could not have asked for a better birthday present. My identical twin sister gave me her kidney. Four months of dialysis was over and surgery day could not have been more exciting. Everything I went through this year was very emotional and scary but without my twin sister I could not have made it through this journey. Even though the difficult part was over... I have to prepare and understand that my renal disease IGA Nephropathy can occur again in the future.
I am telling you my story to make you want to live your life each day to the fullest because in a blink of an eye your life can change forever. Mine did. It is important to go get regular check ups with the doctor even if you think you look and feel fine. I see life differently. Yes the Coach, Burberry, Dooney & Burke handbags are nice and the Lucky brand jeans are cute plus the Aldo shoes look great but those things are just materials. It is stupid to get mad if the dishes do not get washed right away. The dishes will still be there. It will be okay if the laundry does not get done or the house does not get vacuumed. Life will go on. I do not sweat the small stuff because there are more important things. I live my life by enjoying each moment of each day. I am happy with what I have and that is a caring family and helpful friends. I have an amazing husband and two great dogs. I can say I am happy with my life because I have wonderful people in my
My name is Trisha and I've been on Transplant Buddies for almost a year now.....time really flies. I have a different story to tell on the live donor site. I was a perfect match for my father who had ESRD and needed a transplant to survive. I went through the entire process of becoming his live kidney donor and I was accepted and scheduled for surgery this past May 2007. I got three days out from the actual donor surgery and the transplant surgeons stopped me from donating. They had overlooked a small 2 mm. kidney stone in my donor kidney and told me that the surgery could not happen because of this stone. I underwent two more months of diagnostics to see if anything else could be done in relation to the kidney stone and as it turned out....the answer was no. I never even knew the stone existed before I volunteered to be a live donor. It causes no problems and I am perfectly healthy. Still, I was stopped from helping my dad because of this kidney stone. You can ask anyone on this site.....this was a horrible time in my life.
My father ended up on hemodialysis and he was doing really well, so well, that he was able to return to work and also some smaller business trips. In late August, 2007, my father had a very bad fall, an accident while on a business trip, and suffered a subdural hematoma. He would never be the same again after this brain injury and he just passed away January 3, 2008. I was there beside him through it all.
The point of my story is that we all have very different experiences here and mine is certainly that...an experience. I have been through the donor testing, medical workups from the kidney stone, I watched my dad go on dialysis, and I also was there when he took his last breaths. It is all very real. I think people have a lot of decisions to make when it comes to being live donors and also transplant recipients but I think the bottom line is that we are all brave, compassionate, and hopeful people to embark on a journey through transplant. It is a journey. There are times we are all very scared and helpless but I guarantee you that it is part of human nature to be that way and we all have felt that many times throughout the process. My story is not poppies and roses but it is real and if I could change how things turned out for my father....I certainly would.
The best thing I can do right now is to be a part of this website and to welcome people to our Transplant Buddies family. This is exactly what everyone else did for me a year ago when I needed it most. You will find just about everything you could want here and then some. I know I did, and that helped get me through the past year. I want to be a part of helping people through their journey, whatever it may turn out to be. I also want to be here to help others as a way to pay tribute to the memory of my dad who struggled with kidney disease and remained brave during his battle to survive. I hope I can make him proud.
The picture above is of my beautiful mother and my handsome dad, Lou. This is my all-time favorite picture because this is how I’ll always remember my dad looking….. smiling, happy, and having a great time! The picture below is me and my Dad on his 61st birthday in December 2007. It is our last photo together before he passed away. His body may have been weak and ravaged by illness but his soul was strong and perfect. I love you and miss you, Dad!!
Joseph Edward Keller was born on a
beautiful Sunday afternoon, on June 1, 1980. Our ‘Little
Joey’ was the youngest of our four children. Joe was a
very pleasant child to bring up. It always seemed we had
the ‘perfect’ family. A parent’s ideal dreams were
coming true. Tom & Elizabeth were both out of
school, and pursuing careers. Mike, an easy-going junior
in high school, and Joe, our ‘baby,’ was just as
easy-going as his brother. Life was finally slowing down
a little: only one baseball practice, instead of
On August 18th, 1994, all of that
A tropical storm had passed through the
area, and it had rained for days on end. Joe and four of
his friends from school were bored after being stuck in
the house for almost a week. He and his schoolmates
called each other the night of the 17th, and decided
they would get together. School was about to start in
less than two weeks, and they felt they needed a chance
to have some fun before it started. We live in the
country, so they decided to go for a long bike ride,
stop at their favorite swimming spot, and also doing
some bridge jumping. It was a normal thing for them to
do on summer day. It was shortly after noon when they
decided they had to head for home. Joe was supposed to
be home by one to let the Sears repairman in to fix the
washer. When they were getting ready to come home, one
of the girls that was with them decided to go back in
swimming, when she did, she went in on the lower side of
a low-head dam. The hydraulics of the dam pulled her
under. Joe and his friend tried going in to save her.
The other young man was much smaller than Joe, and
changed his mind. Joe attempted to save the life of his
schoolmate. He was not as lucky as she was. A low-head
dam has a mind of it’s own, it decides how long to hold
onto whatever it is that it has, and Joe was held under
the water too long.
One of the boys ran to the campground
across the road to call for help, while the owners of
the campground came out to try to help. The paramedics
were on the scene shortly. The paramedic that worked on
Joe was my cousin Mark. He tried so hard to save Joe’s
life that day, along with the other EMT’s, I will be
forever grateful to them for their help. On the way to
the hospital, they were finally able to get a heartbeat
on him again. It was touch-and-go for the next few hours
until he was stable. My husband, Dave, was called at
work and told about the accident, the HR person took him
to the hospital to meet Joe.
I arrived home about 4 PM. My sister,
Darlene, arrived shortly after I got the news from my
daughter that Joe was in an accident. My daughter,
Elizabeth, was still trying to find her brother, Mike,
and was planning on picking up Tom from work, and going
to the hospital. They were flying Joe, via Life Lion
helicopter from Hanover to York Hospital to be taken
care of by the Trauma Unit.
Most of us arrived at the hospital at
the same time. I will never forget the sound of Life
Lion landing. We were met by the patient rep. and put in
a room to wait for news. Dave was not there yet; he was
being driven from Hanover to York. As we all gathered in
this room, the doctor came in, and told us very bluntly
that Joe was not going to make it. He said they had lost
him at the creek, and several times after that, and he
had no chance of making it. I remember sitting there,
not knowing what to say. I thought he had broken an arm
or a leg…not drowned! My son was an expert swimmer, how
could that happen? I remember my oldest sister asking
where he was and if we could see him, just to let him
know that we were there, and he was not alone. I was
speechless when he replied that it didn’t matter, he
would not know we were there anyway. This went against
everything that I had ever believed in. I asked the
doctor if he was still alive and he replied, “Yes", and
I said, “Then there is still hope for him".
The next few days were touch and
go…many hurdles to cross, and me thinking that each day
he made it through was a good thing, that he was going
to pull through this, he was young, strong, and
determined. We spent those days sitting with Joe,
reading to him, talking to him, or just quietly sitting
by his side, and praying.
On another beautiful Sunday morning, we
were told that our son, Joe, had died, that he was brain
dead. I had a problem understanding exactly what that
meant. We shared this with our extended family and
friends who had become our support through all of this,
who held a 24-hour vigil at the hospital with us. We
told them Joe was still there if they wanted to say good
bye, and we returned to the ‘room’ to make arrangements
Several people met us when Dave and I
returned. The doctor, and nurses, Tom & Rick,
transplant coordinators from Delaware Valley Transplant
Program, (now GOLDP) the chaplain at the hospital (who
happened to have been the priest at our church when Joe
was a baby, and had baptized him). They asked us how we
felt about organ donation, and I immediately told them
No! My husband said yes. I told them it wasn’t
fair. He had risked his life to save someone else, and
now they were asking for him to give even more!
We spent an endless amount of time
after that talking about Joe, and the kind of kid he
was. Joe was a great kid. We told stories about him and
shared his life with all that were there. Joe was a
great athlete; he played baseball, basketball, wrestled,
and was on the swim team when he was very young. He was
also a Boy Scout, on his way to being an Eagle Scout. It
just wasn’t fair that such a good kid, with a good
future ahead of him should loose his life. As we sat and
talked about Joe, Tom the one coordinator said to me,
you know you have told us about Joe, and he sounded like
a great kid who had a heart of gold, wouldn’t it be a
shame to loose that, and not be able to share it with
someone else? At that point, I could not agree with him
more. After all if he had not had a heart of gold, we
would not have been there, he was always trying to help
When I finally agreed, I told them it
had to be a family decision, that I needed for my kids
to be there to agree on it, he was as much their
brother, as much as our son. I would not have them
hating me somewhere down the line, because we did
something they did not agree with. His brother, Tom, was
21 years old, and when asked, he agreed, it was the
right thing to do, as he said, you can’t take it with
you, so you may as well share it with someone who needs
it. Elizabeth was 20, and expecting our first grandchild
at the time, was very loud like her mother in voicing
her opinion that it was not going to happen. Mike was
17, and he quietly disagreed with our decision. We
talked about all of the things we did before, and
answered all of their questions on donation, and what it
meant. Finally we came to an agreement, as a family to
donate Joe’s heart, kidneys, liver, pancreas, and skin.
We also donated his lungs that could not be
transplanted, but were used for research. As a family
that afternoon, we signed all the papers together.
I personally had a problem with my
decision, I knew I had done the right thing, but I was
not convinced that I had done what Joe wanted me to do.
After all, we had never talked about organ donation, and
how could I know that I did what he wanted. I felt as
though he was old enough to make that choice, and we
could only guess at what he wanted. I usually took a
daily walk, and when I did, I always took the ‘short
block’. We had two where we lived: one two miles long
and one five miles long. As I got to the end of the road
that day, I found myself turning right instead of the
usual left. As I walked, I passed the home of one of
Joe’s friends. It was as if someone was playing an old
movie for me. I saw them playing together, they were six
or seven years old. Joe used to fuss over him like a
little mother hen. When he came to visit us, Joe would
have me set the alarm clock so that when it was time for
him to take his medicine, we would not forget. If he ate
with us, Joe would check to make sure everything was
‘good’ for him. At that moment I recalled this little
boy had a liver transplant a few years before Joe had
met him. I remembered my son telling me at a very young
age, that he thought that was the most awesome thing
that someone could do for someone else. It was as if the
weight of the world was lifted from my shoulders. I
finally realized that I had done exactly what was right,
and what Joe had wanted also! I knew then it was Joe,
dragging me that way, and kicking me in the pants to
tell me that I should not worry about it, I did what he
We have come along way since August 21,
1994. Our family has talked about organ donation many
times, and I now know exactly what each of my family
members want. I remember my brother-in-law saying to me
as he hugged me after Joe died that day in the hospital
that he didn’t agree with what we were doing, but he
would support us. He was the first one to come to us a
few weeks later with a donor card. He told us, “If it’s
good enough for Joe, it is good enough for me." And as
most of our family and friends renew their driver’s
license, most have brought that license to us, and said,
“Look, I’m doing this for Joe!" We have all learned a
great deal about organ and tissue donation since Joe’s
death, I just wish we had known just part of it before
he died. We try hard to talk to as many people as
possible about organ and tissue donation, because we
would hope that there would never be every family could
make an educated decision on donation. I thank Tom &
Rick everyday for being so compassionate and patient
with me that day, and the many days since then. Our
favorite groups to talk to are the young kids; I talk to
many school groups. Dave and I together with a recipient
have talked to a countless amount of Boy Scouts, Girl
Scouts and Cub Scouts. We tell them about organ
donation, how important it is to talk to their families,
and also help them to earn their Organ Donor Awareness
Patch. We do a float in the York Halloween Parade every
year, in conjunction with the boys to promote donor
Has all of this made up for the loss of
our son, and brother? No, but nothing can do that. But
it means that his life and death have had a lot more
meaning. Even after his death he continues to touch the
hearts of so many through his gift of life. Thank you
for allowing me to share my son’s story with all of you.
In loving Memory of our son, Joseph E.
(Joe's photo is on our Photos page).
Doreen's daughter Stacey.
On May 27th, 1998 I was driving my 13 year-old daughter & 14 year-old son to school. It was a familiar road...a road that I had traveled hundreds of times before without incident. On this route I had to cross the Trans-Canada hwy. When you first approach the Trans-Canada on this route there is a stop sign. I stopped there & when it was safe I proceeded to the middle of the intersection where there is a yield sign. When I stopped there I did not see anything coming so I proceeded. However, there was a vehicle in my blind spot & as I moved ahead so did it, so it stayed in my blind spot. I did not see it until a second or two before the crash. We were t-boned by a welding truck full of equipment on one side, then it spun around & hit the other side before we rolled into the ditch. The driver of the welding truck had no injuries but all 3 of us were critically injured. Stacey's brain injury was the most severe & despite all attempts to save her she succumbed to her injuries on May 29th, 1998. I had been in & out of consciousness & once when I came to for a brief period, I heard my husband talking to the organ donor coordinator. I don't know how I was able to focus on that but all I said was "Stacey would want that" & then I was out of it.
We knew that Stacey would want that because that's the kind of person she was. She always wanted to help people. She was always smiling & brought so much joy & sunshine into the lives of all who knew her. She was a friend to all, loved animals, enjoyed writing stories & poetry, & she was wise beyond her years. Okay...I'm trying to keep this short!
It has been a tremendous help knowing that Stacey lives on in the lives of others. I have even met the family of one of Stacey's kidney recipients. This little girl was 6 at the time of the transplant & she was very ill from Nephrotic Syndrome. She was diagnosed at 2 1/2 & I saw pictures of her as a healthy 2 year old, then pictures of her shortly after being diagnosed, & then pictures showing the effects of the Nephrotic Syndrome. The picture of her 3 weeks post transplant already showed an amazing difference. We correspond every year through letters, cards & pictures & this year that little girl now has her driver's license & a part time job. She is also doing really well at school and will be graduating high school next year. I am so grateful that we have this relationship & knowing & seeing what a difference Stacey has made in this little girl's life has been such a tremendous help. I will always treasure the very first letter that I got from this family as it contained a letter that the little girl had printed all by herself. At age 6 that letter must have taken a considerable amount of effort & it was so beautiful that it brought tears to my eyes.
Over the years, I have had some kind of contact with all of the recipients except the heart recipient. I send cards, letters & little gifts to all of the recipients every year at Christmas but I've never received anything back from the heart recipient's family.
This year will be 10 years & I would love to hear something from the heart recipient's family. I believe that it was a 3 year-old little girl that got Stacey's heart so this year she would be the same age as Stacey when Stacey died. There are so many things that I wonder about her...like how she's doing for one. Also, I wonder if she is anything like Stacey...does she smile all the time, does she light up the room, does she enjoy writing stories & poetry, does she like skating, swimming, soccer, daisies, animals, etc.
It has taken me a long time to get to where I am today. The first 5 years following Stacey's death I was a mess & could barely function. Partly due to my own injuries, partly due to severe depression with post-traumatic stress disorder, and partly due to guilt since I was the one driving in the accident which caused Stacey's death.
In year 5, I established the Stacey Pchajek Memorial Foundation & we give scholarships, bursaries, and prizes to students graduating grades 8 & 12.
In year 7, I wrote a book called Ultimate Tragedy, which tells of my experiences since Stacey's death. It was my hope that the book could help others who are going through a similar situation and at the same time it could help others understand what bereaved parents go through. All proceeds from the sale of the book go towards my daughter's memorial foundation. http://www.spmf.ca/
The cost of the book is $20 & all of the proceeds go to my daughter's memorial foundation. Payment can be made via PayPal or by sending a cheque or money order payable to:
Box 91A , RR2
Ste. Anne , MB
After publishing my book I was invited to be a guest speaker at a Road Safety Conference and of course I spoke of the importance of organ donation. Every time I present the awards at school I always talk about the importance of organ donation as well. I think that it's important for people to make their wishes known before a tragedy occurs so that family members are aware. I always tell people that we were aware what Stacey would want but are you aware what your loved one would want!?!
To the Recipient of my baby
I want you to know about my baby
Bradley who gave life to you and to others.
I married his father 12/23/83.
Bradley’s brother, Jeffrey, was born 11/03/84. We moved
to Florida four years later. I became pregnant for
Bradley. I carried Bradley for 10 months in southern
Florida; he was comfy and in no hurry. His doctor told
me 8/29/88 he had been in there long enough, so on
8/30/88 they took him by c-section. He was born at 8:38
am, weighed 9 pounds, 8 ounces, and was 22½ inches long
with red hair and hazel eyes. His skin was not fair.
We moved back home to WV in 1991. He
has been my baby. He is very loving, very caring, and
very attentive to others’ needs and especially those of
his mommy. He has been very active in sports: he has
wrestling, t-ball, football, and, most of all, (AMA)
American Motocross Association trophies. His first bike
was a little 50 cc. bike when he was 4 then. Each year a
better bike. His father took 2nd place in the nation in
his class in 1999. Dirt bikes were his forte; he was
great and I never had fear of an accident that would
take my baby’s life. He was great at it.
On March the 22nd I took him up to my
sister’s where he rode often with her kids. She took him
over to his dad’s with her son, Brad’s cousin, Lex. The
next afternoon she came and got the boys and they all
went to the mall, then back to her home for an afternoon
of riding. Bradley spent the night and they began riding
again the next day the 24th. I was home doing laundry
and watching a NASCAR race when at 4:02 pm 3/24 I got
the call my son had been injured in a wreck on his bike
and to go to the hospital.
He had hit Mike (my sister’s
significant other of nine years). Bradley topped a hill
on his dirt bike; when he dropped over there was Mike on
the 4-wheeler. There was no time to react: Bradley hit
his brakes and slid into the front of the 4-wheeler. He
went through the air and put his hands out to brace the
impact. He had his helmet and chest protector on.
He had compound fractures to his right
arm, right leg, and left wrist, no other apparent
injuries. His chest had taken a hard hit from the
pavement. I am told that he quit breathing in the
ambulance while riding to the hospital. They gave him
CPR. This gave him air into his lungs but also his
damaged airway that allowed air into his stomach and
somehow the main artery to the brain. When I reached the
hospital I was told he’d be fine, just cosmetic and some
air in his stomach. He was being transported by
Life-Flight to a trauma center in Charleston, WV. The
flight had to come back to the hospital twice when his
lungs collapsed and his heart stopped. They took care of
When I got to Charleston’s trauma
center, his father and I were informed he had slipped
into a coma, his brain activity was "gray to bleak"
7 hours and 3 surgeries later, he was
not better. The first surgery was to go in and see what
was going on—a little blood, fluid, air—and to repair
the damaged airway. The second was orthopedic, no
problems. The third was a neurosurgeon. They put a fiber
optic cable into his brain to measure pressure, normal
is 0-15; Bradley’s was 105 and never dropped below 74. 3
tests 6 hours apart, aside from the obvious tests
(unable to breathe on his own, no pupil dilation), he
was declared brain dead at 8:05 Tuesday evening, 3/26/02
I knew I would donate his organs I am
an organ donor.
I stayed with him the entire time in
the hospital. I loved him, kissed, hugged and rocked his
bed. I was there as the organs were being designated. I
stayed with my baby until 3/27 at 12:15 pm when the
teams came in to take my baby to O.R. and then I came
home to a memorial balloon launch at his school. He was
an 8th grader loved by all. 487 people came to pay their
respects to my baby. It was an open casket service. The
cards, plants and flowers surpass 500 they continue to
I just want you to know what a
wonderful child he was. I pray for you and your new
organ. I pray that this will allow you to continue on
with a wonderful, fulfilling life. I welcome any and all
contacts from you. I believe this also will help with my
healing and ability to go forward without my child at my
side, knowing his organ lives on in a wonderful person.
I pray your recovery is speedy and know my family loves
you although we were brought together by tragedy.