My Liver Transplant Story

I was born and diagnosed at age two with Tyrosinemia, a very rare metabolic disease where the liver doesn't have any enzymes it needs to break down protein.

When my mother noticed I wasn't walking or acting like other babies my age, she took me from one doctor to to another with none of them knowing what was wrong. I was sent to Scottish Rite Children's Hospital in Atlanta.

This is where I was finally diagnosed correctly but even then, because it was so rare they didn't know how to treat it. I was sent from there to Egleston Children's Hospital and put under the care of Dr. Louis Elsas. I was the second in the united states to have this; I became his study to learn from.

The protein can build up and destroy other organs so to keep this from happening, I wasn't allowed to eat anything that had protein and tyrosine in it. I was on a special formula; it was supposed to give me the vitamins and minerals that I wasn't getting. It was always hard explaining to anyone about my disease or why I couldn't eat like they did.

When I got older and was tired of explaining, I tried to hide being sick and just told kids that I was vegetarian. No one really knew except for my teachers. They were the only ones who knew my whole story. I took a lot of medications to help and prevent complication. I was in and out of the hospital all the time. Most of the time it was for my blood pressure or severe nose bleeds.

My mom told me of a story one time where my nose bled so much that I had to be rushed to Egleston in a snow storm. When I would get a cold, flu or any other virus, it would throw my system out of order. I would usually get admitted for this too. When I wasn't in the hospital, I was visiting the doctor. Regardless of this, I still tried to act like a normal kid. Sometimes I could even forget being sick.

We lived in Florida for a few years. While there, when I was twelve, my parents received a letter from Dr. Elsas. It said that many of the Tyrosinemia kids were being diagnosed with liver cancer and that I needed to be looked at too. We came back to Georgia so I could be tested. It was confirmed that I did have cancer in my liver and it was spreading fast.

Things from then on moved pretty fast and turned me and my parents world upside down. We were told I needed a liver transplant to live. We were introduced to Dr. Thomas Dodson; he started the pediatric liver transplant program that year. There were only a hand full of kids he transplanted and one of them had also had Tyrosinemia.

I was admitted to the hospital for three days and they ran a bunch of tests on every part of me. Once I was accepted, I was placed on the waiting list and my parents were given a pager. I don't remember how long I waited but mom said it wasn't very long. It seemed to be a long time to me! We had several false alarms but the day finally came.

I was with my mom and sister; we were running errands for granddaddy's birthday which was the next day. We stopped for lunch; I remember having a waffle. Mom and my sister had burgers. We were talking and laughing; the pager went off. None of us thought anything about it. Mom pulled it out and then put it back in her purse. After a second, she jumped up and said that is Jeanne!

She went to the pay phone and called her back. Jeanne said they had a liver for me but tests needed to be run on it. An hour later, she called back and said for us to come to the hospital. I arrived with a fever and they were talking about rather to do it or not. I was given a Tylenol and we waited. The fever went down so they decided to go forward.

Surgery was set for early the next morning. I was admitted into a room; I calmly watched cartoons while being prepped. My nurse brought me a Valium; I told her to give it to my mom! She was a lot more nervous than me.

Morning came and I was taken to surgery. I was in the hall with everyone around me when it kicked in that this was real. I was shaking and the nurse asked if I was cold. Almost in tears, I said no, my Valium wore off! That is all I remember before waking up in ICU.

When I woke up, I was strapped down. I couldn't move or talk which freaked me out. The first person I remember seeing was Jeanne. She told me I had a new healthy liver and I started crying. I don't remember much because I was on Morphine and slept most of the time. Mom said on the second day, I tried to pull myself up in bed. Supposedly I started hurting; a nurse injected something into the IV in my neck and I went out.

We were told, the transplant would be called off if the cancer had spread. It had already spread throughout my liver and gallbladder. It was covered in white tumors and scaring.

July 2, 1991, I became Georgia's eighth pediatric liver transplant recipient. My surgery lasted eight hours and I was in the hospital for three weeks. I had a perfect recovery; Dr. Dodson called me his star patient. On the twentieth day of my transplant, I was sent home!

I have had some ups and downs but have done exceptionally well over the years. I have a beautiful scar on my belly in the shape of an upside down Y. I've always thought of it as a badge of honor for what I went through. I've been able to do many things and meet many people as a result of my transplant.

Because of the studying that was done one me and my liver, newborns in Georgia are now screened for Tyrosinemia and other metabolic disease. A new drug was created that can slow down the need for a transplant and in some cases prevent it.

A lot of people ask me how I went through all that so young. I don't know, I never thought of it like that. To me it was just something that had to be done to save my life. I think things happen for a reason. I was given this so I could use it to help and inspire other people and I believe I have and continue to do that.

I found out that my donor was an 11 year old girl from Arkansas. I don't know anything else about her but not a day goes by that I don't think of her, her family and what they have given me.