Hostess Risa
Board Administrator
Username: Risa
Post Number: 8573
Registered: 05-2003
| | Posted on Thursday, April 16, 2009 - 09:28 am: | 
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My birthday is July 22, 1953, but my life day is December 20, 2008..
>>> > That
>>> > is
>>> > the day a very special 6 year old child came and resurrected me from
>>> > certain
>>> > death.
>>> > December 16, 2006, was my day off from work as a chiropractic
>>> > assistant.
>>> > I
>>> > awoke feeling nauseous. Suddenly, I began throwing up massive amounts
>>> > of
>>> > blood. Believing I was healthy and being active all my life, I
>>> > attempted
>>> > to
>>> > reason with my body by telling myself it would soon stop. It didn’t and
>>> > quickly I began to feel weak and very dizzy. Finally, at the prodding
>>> > of
>>> > my
>>> > sister-in-law I relented. I allowed her to rush me to the ER. I do not
>>> > think
>>> > I would be telling this story today if it were not for her quick action
>>> > that
>>> > both saved my life and yet at the same time took it away. I was told
>>> > Hepatitis C had destroyed my liver and without receiving a liver
>>> > transplant
>>> > my days were numbered. (Hepatitis C is now the number one cause for
>>> > liver
>>> > transplants). I was also told my health would now be on a steady
>>> > downhill
>>> > roll and that I would need to become proactive in receiving a liver
>>> > transplant.. And so, that very day, the fight for my life had begun.
>>> > HOW DOES A PERSON GET A LIVER TRANSPLANT WHEN THEY DON’T HAVE HEALTH
>>> > INSURANCE?
>>> > A very kind and gentle spirit from the hospital began the process of
>>> > filing
>>> > for disability on my behalf. In my mind, I was not disabled and planned
>>> > on
>>> > returning to work. Obviously, she knew how serious my condition was and
>>> > she
>>> > was right. I was unable to work from that day forward.
>>> > Death and I began our dance, sometimes I would lead and other times
>>> > death
>>> > gripped so tightly I struggled to stay elegant on my feet. It was
>>> > obvious I
>>> > was not comfortable with the thought of leaving this permanent
>>> > residence
>>> > I’d
>>> > had for 53 years, but time would change that.
>>> > I was approved for disability rather quickly. This also scared me. It
>>> > meant
>>> > even they thought I was very sick. In June of 2006, my medical bills
>>> > would
>>> > now be paid by Medicaid and I could now start the process of recieving
>>> > a
>>> > new
>>> > liver. There is no point in talking about the medical bills before then
>>> > other than to say my credit sucks.
>>> > The first thing I discovered about Medicaid is that you have to go
>>> > through a
>>> > local Health Department for care. Finding physicians who accept
>>> > Medicaid
>>> > is
>>> > close to, if not, impossible.. Although the Health Department gave me
>>> > immediate care and did all they could to help me, they could only refer
>>> > me
>>> > to specialists when my health began to decline. Believe it or not, upon
>>> > referral to one specialist, I was told that he "did not want
>>> > the responsibility of caring for someone in my condition". Many of
>>> > these
>>> > doctors are retired and kindly donate their time at government funded
>>> > clinics. The Health Department had never treated anyone who would
>>> > continue
>>> > on to get a transplant and had no idea what to do with a patient like
>>> > me. I
>>> > began to feel very alone and wondered who could give me some guidance.
>>> > Where
>>> > does one who is on Medicaid go to get a liver transplant?
>>> > I searched online for a transplant support group in Sarasota and could
>>> > find
>>> > no meetings. There were meetings in St. Petersburg, Tampa, etc., but
>>> > honestly, I didn’t have the energy or strength to make that kind of
>>> > trip.
>>> > One of my goals is to begin a support group for pre and post transplant
>>> > candidates in Sarasota. I found Transplant Buddies.com, an online
>>> > support
>>> > group for all organ and tissue transplant candidates and recipients. I
>>> > cannot begin to express in words what that group did for me during the
>>> > two
>>> > years I waited and wondered whether death would give me a final dip.. I
>>> > just
>>> > hoped I would, at the least, be graceful going down, if not flamboyant.
>>> > On
>>> > the days I no longer cared about getting out of bed or the days the
>>> > thought
>>> > of leaving my dear ones was not such a bad idea I would crawl, and I do
>>> > mean
>>> > that literally, to my computer. There I found peace, comfort, support
>>> > and
>>> > even humor from a group of powerful and knowledgeable people. And most
>>> > importantly, to never give up hope! My network of friends and family
>>> > were a
>>> > tremendous support, but as much as they wanted to help, there is a void
>>> > that
>>> > only those who have had the experience can fill.
>>> >
>>> > I began by calling transplant centers to find out what to do. Each one
>>> > had
>>> > their own criteria and that included hundreds of pre-tests before even
>>> > being
>>> > seen by a transplant center for evaluation as a transplant candidate..
>>> > It’s
>>> > a good thing I love riding roller coasters. It took months to get the
>>> > tests
>>> > I needed before I finally made it to a transplant consultation. Guess
>>> > what....I need a liver transplant. I then receive another list of tests
>>> > (for
>>> > Medicaid approval) and this time they are very "specialty" oriented.
>>> > Endoscopy, colonoscopy , MRI’s, heart test, blood tests and so on. Okay
>>> > fine
>>> > , I have the paper in my hand with all the tests I need done. My
>>> > thought
>>> > is
>>> > I’ll just go down the list and start getting them done one by one. Not
>>> > so
>>> > fast. It took thousands of phone calls of refusing to accept the answer
>>> > no,
>>> > maybe even possible harassment at times (in a nice way) to even begin
>>> > getting the tests done.
>>> > It took nearly a year of phone calls and the many wonderful people
>>> > working in the medical field helping me as best they could to get each
>>> > and
>>> > every test done. Please let me say thank you now to the many healthcare
>>> > workers who went above and beyond their "job description" to assist me
>>> > in my
>>> > quest
>>> > While I continued to fight my battle, I met, and lost, friends along
>>> > the
>>> > way
>>> > who were suffering from the same disease. It was incredibly
>>> > disheartening to
>>> > watch their decline because they, too, wanted so much to live. They
>>> > just
>>> > didn’t have the strength or knowledge of the transplant process to help
>>> > them.. As much as I wanted to help them, and believe me, at first I
>>> > tried, I
>>> > needed to expend the little energy I had left to save my own you know
>>> > what.
>>> > The last three tests on my list took months to get. I could not find a
>>> > doctor in Sarasota who took Medicaid for the colonoscopy or endoscopy.
>>> > Finally, after what seemed like a million phone calls, I found a kind
>>> > doctor
>>> > in Naples who did both tests for me. The last test I needed to have
>>> > done,
>>> > the heart evaluation, seemed nearly impossible. It meant a heart
>>> > specialist
>>> > had to be involved and not many of them take Medicaid. Let’s just say
>>> > after
>>> > many ER trips over the last two years for a multitude of complications,
>>> > I
>>> > got to know people. I am not above begging for my life, okay? I have
>>> > four
>>> > children and four grandchildren I planned on watching grow.
>>> > Finally, the tests are done, the transplant can (upon approval from
>>> > Medicaid) finally become a reality. Now the real wait begins. In
>>> > October,
>>> > 2008, I was placed on the UNOS (United Network for Organ Sharing) list
>>> > as a
>>> > liver recipient candidate. It was a very fortunate thing for me that my
>>> > blood type was an unusual one. I am B+. My favorite line is, "That’s
>>> > why
>>> > I
>>> > be positive all the time!" Really, I have always been a positive
>>> > person.
>>> > Before I end my story, I feel I must tell you about my angelic
>>> > visitation.
>>> > My last trip to the ER, death was doing a dance unknown to me and I was
>>> > unsteady upon my feet. I saw a brilliant light filling my room and
>>> > heard
>>> > a
>>> > most beautiful voice whispering to me it was not yet time. I had work
>>> > to
>>> > do..
>>> > I would receive a transplant before Christmas and would spend Christmas
>>> > Day
>>> > with my family. Of course, when I shared this with my family they
>>> > wanted
>>> > to
>>> > believe because I believed, but they were very doubtful.
>>> > Thanksgiving came and went, Christmas was fast approaching and never
>>> > was
>>> > there doubt in my mind. Mid December came and still I believed. I told
>>> > my
>>> > husband it wouldn’t be much longer. I began packing a bag to take with
>>> > me to
>>> > the hospital. December 20, 2008, is the day I got that wonderful phone
>>> > call.
>>> > There was a possible donor. On that miraculous Saturday morning, a six
>>> > year
>>> > old child saved my life. I will be forever grateful to organ donors and
>>> > their families. I do love the child within me. To end my story,
>>> > yep....I
>>> > WAS
>>> > HOME CHRISTMAS DAY!
>>> >
>>> > This is dedicated to my friend, Karen, a/k/a Sweetsie, for whom, like
>>> > so
>>> > many others, it was livor die.
>>> >
>>> > Should anyone wish to contact me with questions or to help get a group
>>> > started in Sarasota, I would love hearing from you.
>>> >
>>> > Thank you for reading my story.
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