We hope that you will contribute your story of transplantation or organ donation to this new permanent archive of personal stories. Use as much space as you need, but preferably keep the length around 1000 - 1500 words or so (Using absolute dates helps, i.e., “January, 2001” instead of “14 months ago” since the first will continue to be accurate as time passes, but the second will not).

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Heart Transplant Stories

Adrienne

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 so.

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 outdoors.

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,

Adrienne Steiner

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 my story...

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 Life!

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 waiting list.

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 transplant!

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 change.

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 was built.

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 recovered.

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 celebs Ha…)

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 Mind!

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 continue...

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 publishers.

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.

HEART TRANSPLANT

No football, no biking,
No running, no hiking,
Bleep goes the machine,
You lie there so weak,
Why is life so mean?

With the oxygen mask,
Life's a uphill task,
Oh donor come fast,
And save me at last.

A donor is found,
Put your feet on the ground,
And jump up for joy,
Life's changing my boy.

Yes to football, Yes to biking
Yes to running, Yes to hiking,
No more bleeps from that
dreaded machine, Life is better than ever it's been.

Your no longer wistful-
As you run in the grass-
Thanks to the gift of life,
Your 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...

Bobby

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 remission.

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 record.

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 in years.

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 waiting.

P.S. I saved my toy castle from years ago in hopes that I would have a child. Can you believe it?

David

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 miracle.

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 event.

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 that.

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 1989.

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 hospitalized.

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.

Transplant

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 operation.

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 occasion.

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 donor.

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 877-289-2665.

Jim

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 meet.

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 Island).

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.

Joseph

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 recovering.

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 prayers.

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 hospital.

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 peace.

Perry

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 turned away.

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 second opinion.

Stay healthy and see you all around the board.

Kidney Transplant Stories

Annabeth

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 road.

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 there!

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 began.

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 new kidney.

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 family.

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 way.

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 His hand.

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 transplant athletics.

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 verses:
Matthew 10:8 Heal the sick,....freely ye have received, freely give.
Luke 6:37-38 Give and it shall be given unto you.
John 10:10 Give life that others may live more abundantly.
John 15:12-13 Greater love has no man...

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 well.

Ed

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 enjoyed.

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 dialysis.

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 treatment.

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 my sanity.

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!

Geri

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 computer.

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 ShareYourLife.org

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) 225-6872.

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, NY 10016.
• 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 ask questions.

Jan

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 blockage).

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 on dialysis.

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 that.

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.

Lorna

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 brain.

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

Mary-K

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 for.

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 encouragement.

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 blessings.

God Bless each and every one of you.

Michelle

My name is Michelle Martin. I am 32, born on March 13th, 1973 in Passaic New Jersey. Currently, I live in Pembroke Pines, Florida, with Ty Martin, my husband of ten 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, and with a new house, 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. My dad has had kidney problems due to Goodpasture's Syndrome, and one of my younger brothers had just been diagnosed with lupus. When the office called with our 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. 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. 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 anti-depressants.

I contacted my nephrologist and discovered that I was eligible for a kidney transplant, we and 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 a regular room for a while. 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 spleen and large intestine after CMV had destroyed it. I had an illiostomy created. A feeding tube was inserted and a tracheotomy was cut into my windpipe. I was in a drug-induced coma for six. Five blood drives were held and I received over fifty pints of blood. 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 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. No one except my mom matched, or only matched 1-6 antigens. My mom was disqualified after enduring her own biopsy. So, I sat on hemodialysis for a total of two and a half years.

Ty’s 33rd birthday, 3 days post-transplant

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. I got the last call for a cadaver kidney on July 12th, 2005, less than 24 hours before Ty and I were scheduled for 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 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 14, 2006, it has been six months post-transplant and, other than a cold and my first-ever UTI, everything has been great! We went back to the gym not even three months post transplant and both started attending class again. 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! Oh, and after the mandatory year post-transplant wait, along with my doctors’ blessings, we will try for that family we’ve wanted for so long sometime this upcoming summer. God bless all donors, recipients and all the 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.

Sarah

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 perfect match.

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!

Kidney/Pancreas Transplant Stories

Alese

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, 2003.

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 12 hours.

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, b.i.d.

My birthday is April 1st, so you can imagine, my transplant was a true gift, 20 days later.

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.

Kim

In 1984 my brother and I were diagnosed with diabetes. We both started out on insulin right away.

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 normal.

Once again, my insulin doses were increased. I was told again "watch your blood sugars".

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 diabetes.

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 transplant.

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 night.

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 condition.

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 grief.

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 life!

Joanne

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 moderation.

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 Jacksonville.

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, organs.

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 subsided.

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 mine!

Lung Transplant Stories

Andrei

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 place.

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 month.

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 attention.

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 alive.

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 food.

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 anything...

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 beginning.

Brad

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 it.

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.

Buddy

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 painkilling medication.

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 live.

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 hea