Written by Terri Willis, Liver Transplant Recipient.
I was born and diagnosed at the age of two with Tyrosinemia, a very rare metabolic disease. This is where the liver doesn't have the proper enzymes it needs to break down protein. I was diagnosed at Scottish Rite Children's Hospital but the doctor didn't know how to treat me so I was sent to Egleston Children's Hospital. I was the second person in the United States to be diagnosed with this disease. I had to be on a special diet and could not eat anything with protein and tyrosine (one of the amino acids that the body uses to break down proteins) in it. I had to drink a formula and was on several other medications. I was in-and-out of the hospital a lot because of several complications. My blood pressure would go sky high or I would get severe nose bleeds that could not be stopped on their own.
When your liver does not work properly, your blood’s ability to clot does not work properly either. My family and I lived in Florida for a few years when I was 12 and while there my parents received a letter from the doctor who had treated me at Egleston Children’s Hospital. It said many of Tyrosinemia kids were being diagnosed with liver cancer and that I needed to be tested. We came back to Georgia and it was confirmed that I did have cancer and it was spreading fast. We were informed that I needed a liver transplant and were introduced to Dr. Thomas Dodson, who started the pediatric liver transplant program in 1990. I was admitted for three days for several tests. Once I was accepted, I was placed on the national waiting list and my parents were given a pager. I don't remember how long I waited but my mom said it was not long. It seemed long to me because we had many false alarms.
When the day finally came I was with my mom and sister. We were running errands for my granddaddy's birthday which was the next day. We stopped for lunch and I remember ordering a waffle. We were just talking and laughing when the pager went off. None of us thought anything of it and mom pulled it out of her bag and put it back. After a second, it hit her. She jumped up and said that's Jeanne! Jeanne was my transplant coordinator. She said they had a liver for me but tests had to be done on it. An hour later, she called back and said for us to come to the hospital. I had a fever when I arrived; they were talking about whether to go through with the surgery or not. I was given a Tylenol and we waited. The Tylenol brought the fever down so we moved forward. Surgery was set for early the next morning.
I calmly watched cartoons while being prepped. My nurse brought me a Valium. I asked what it was for and she told me it was so I wouldn't be nervous. I said I don't need it, give it to my mom! Morning came and I was taken to surgery. I was in the hall with everyone around me when the nerves kicked in. I was shaking and my nurse asked if I was cold. Almost in tears, I said no, my Valium wore off! Everyone was amused except for me. When I woke up, I was strapped down. I couldn't move or talk which freaked me out. I have no memories of it but my mom says I had a lot of IVs and tubes and I was temporarily on a breathing machine.
When I first woke up, the first person I saw was Jeanne. She told me I had a new healthy liver and I started crying. We were told the transplant would be called off if the cancer had spread. When they opened me, it had already spread throughout my liver and my gallbladder. My old liver was covered in tumors and badly scarred. I wouldn't have been able to wait much longer.
On July 2, 1991, I became Georgia's 8th pediatric liver transplant recipient. My surgery lasted 8 hours and I was in the hospital for three weeks. I had a perfect recovery; Dr. Dodson called me his star patient. On the 20th day following my transplant, I was sent home.
Because of the research that was compiled from me and my liver, newborns in Georgia are now screened for Tyrosinemia and other metabolic disease. In fact, a new drug was created that can slow down the need for a transplant and in some cases prevent it.
It has now been over 20 years and I have done exceptionally well. I have had many ups and downs but I would not trade them for anything. I have a huge scar on my belly in the shape of an upside down Y. I love it and consider it a badge of honor for what I went through. A lot of people have asked me what it felt like to go through something like this at such a young age. But I never thought of it, at the time it was just something that had to be done to save my life. I had been living like that for so long, I didn’t know anything else.
I think I was given this journey to help and inspire other people and I believe I am doing that. It has made me who I am today. I found out my donor was an 11 year old girl from Arkansas. I don't know anything else about her. I don't even know her name but not a day goes by that I don't think of her, her family, and what was given to me.