Terri W.

Tyrosinemia

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 and put under the care of Dr. Louis Elsas. I was the second in the united states to have this.

I had to be on a special diet and couldn’t eat anything with protein and tyrosine in it. I had to drink a formula and was on several other medicine. I was in and out of the hospital a lot for several complications. My blood pressure would go sky high or I would get severe nose bloods that couldn’t be stopped on their own. When your liver doesn’t work right, your ability to clot doesn’t work.

We lived in Florida for a few years. While there, when I was 12, my parents received a letter from Dr. Elsas. It said many of Tyrosinemia kids were being diagnosed with liver cancer and that I needed to be tested.

We came back to Georgia; 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. He started the liver transplant program that year.

I was admitted for three days for a bunch of 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 mom said it wasn’t long. It seemed long to me because we had many false alarms.

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; I remember having a waffle. We were just talking and laughing when the pager went off. None of us thought anything of it; mom pulled it out of her bag and put it back. After a second it, 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 rather to go through with the surgery or not. I was given a Tylenol and we waited. That 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. I was temporarily on a breathing machine. After my skin being pale and gray my whole life, the first thing she remembers is that I is that it was pink. 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 scared. I wouldn’t have been able to wait much longer.

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. This is how Starla got her name! On the 20th day of my transplant, I was sent home.

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.

It’s now over 20 years later and I have done exceptionally well. I have had many ups and downs but I wouldn’t trade them for anything. I have 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 how I went though all this so young. I never thought of it; to me it was just something that had to be done to save my life. I’ve been doing this for so long, I don’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.

Last updated on August 3rd, 2022 at 02:29 pm