Terri Lynne Willis was 13 when she received a new liver and the chance to grow up. Although the Douglasville resident knows very little about the 11-year-old girl from Arkansas who made adulthood possible, Willis thinks about her every day. “I have been walking around with her liver for 25 years,” she says. “Without her or her family, I wouldn’t be here.” April is National Donate Life Month and currently, 118,000 people are waiting for an organ. It should come as no surprise that Willis has registered as an organ donor herself.
Q: Why did you need a liver transplant in the first place?
A: I was born with tyrosinemia, a very rare metabolic disease. My liver was missing the enzymes it needed to break down tyrosine, an amino acid and building block of most proteins. I couldn't eat meat or dairy and I like to tell people that I was a vegetarian before it became cool. When I was 12, I was diagnosed with liver cancer and it was spreading fast and we were told I needed a liver transplant. I was put on the list for a liver and a couple months later, I got my new one.
Q: What do you know about the donor?
A: Not much. I wrote the donor family a letter a couple of years after my transplant and gave it to LifeLink to send to them but I didn't hear anything back. After I graduated from high school, I sent a second letter with a prom picture.
Q: Why did you write a second time?
A: I wanted them to know that I was still alive and doing great. Even though I knew I wouldn't get a reply, I wanted them to know that I was still thinking of them and was doing OK.
Q: Maybe it was just too painful for them to reach out?
A: That could be true. I don't know my own donor family but I have met others. Some chose to keep in touch with their recipient. They still mourn but say it helps them knowing their child's organs gave another child life. Other donor families find it too painful, which I understand and respect.
Q: How do you think being an organ recipient has influenced your life?
A: I think being born with liver disease and having my transplant helped me be who I am. I am very stubborn. I had to be stubborn to fight for my life. I guess that took over into every other aspect of my life. One of my favorite things I've done post-transplant was run a marathon in 2007. Most people consider that to be too much but my thought was, it couldn't be as hard as having had a liver transplant.
Q: A lot is involved in post-transplant life, right?
A: There are medicines I take every day and routine visits to Emory. However often I go depends on how my labs are doing. I've had several ups and downs over the years. Even when problems arise, I am very grateful for my life.
Q: Why is sharing your story so important to you?
A: To get the word out about organ donation. There are so many people out there who have not registered to donate. People need to see that you can save someone's life, or extend it. You can't take your organs with you so why not recycle them and give someone their life back?
Q: What else do people need to know about organ donation?
A: You need to tell your family that you want to be an organ donor. Even if you are registered, your next of kin can say no if they don't know your wishes.
Q: So are you a registered organ donor?
A: I am. I'm not sure if anyone can use my organs but I'll give them the opportunity to decide when I'm gone. There are so many people who exclude themselves, who say, "I am too old," or "I have this illness." They might be surprised to find that their organs can still be used in some cases.
For more on organ donation and how to register: www.organdonor.gov
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