ATLANTA, Ga. - Terri Willis was born with Tyrosinemia, a very rare metabolic disease. This is where the liver doesn't have the proper enzymes it needs to break down protein. Because it was so rare, Terri wasn't diagnosed until she was two years old. Terri was only the second person in the United States to be diagnosed with it at that time.
"I was born with a disease that led to liver cancer and needed a liver transplant which I received when I was 13 years old at Children's Healthcare of Atlanta at Egleston," said Terri.
Terri and her family met Dr. Thomas Dodson and he was the one who started Egleston's liver transplant program in 1990.
"I cannot remember how long I was on the list. I know it wasn't long. Back then, they gave you a pager while waiting. I was with my mom and sister at lunch at the Waffle House when it went off. It was from my coordinator, telling us they had a liver for me."
"My parents were told if during surgery they saw the cancer spreading outside of the liver then they would close me up. The liver would go to someone else and nothing more could be done for me. At the time of my surgery, the cancer had already spread all throughout the liver and my gallbladder. If I had waited any longer, it probably would have been too late."
The surgery lasted eight hours and Terri became Georgia's and Egleston's 8th pediatric liver transplant recipient. "The first thing I remember was my transplant coordinator telling me I had a new healthy liver. I couldn't talk because I was on a breathing machine, but I remember crying."
Terri lived a fairly normal life and started running and ran track at the U.S. Transplant Games.
Last June, Terri had a liver biopsy and it came back as mild rejection, Terri's 3rd one in 19 years. After eight months, a second biopsy confirmed Terri was out of rejection. "It hasn't been easy but I still run and walk. I continued doing it throughout my rejection. I wanted to celebrate getting out of rejection by doing what I love, running."
Terri is still in contact with her transplant surgeon, Dr. Thomas Dodson. Dr. Dodson no longer performs liver transplants, but is still at Emory as a vascular surgeon.
"This July, I will celebrate my quarter century anniversary. I've had ups and downs like any transplant recipient but, 25 years later, I am still here with the same transplanted liver."
"I want patients to see that they can be active post-transplant. I ran a marathon in 2007. I can't run nearly that far now but I still do it. I also want people to see this story and realize that if someone hadn't said yes to organ donation, I would not be here."