This interview was conducted with a 15-year-old boy who received a liver transplant, and his mother.
When were you first diagnosed?
I was diagnosed with Wilson's disease on June 29, 2002 [at a hospital in my home state]. It all happened really fast. I had nepidema, and gained 40 pounds of fluid in a week.
Mom: When he first noticed it, he didn't tell me for about a week. It's a scary thing to have going on with your body. And with the baggy clothes, I couldn't see it right away. I'd come home from work and he'd be covered up with a blanket.
When you were first diagnosed, did you have any idea what it meant? How did you learn more about it?
Mom: When we got the diagnosis, as soon as I got home I did tons of research on the Internet.
I didn't do that because I was already in the hospital.
Mom: I had never even heard of [Wilson's disease], but I found lots of great sites to go to. All you have to do is search for "Wilson's disease." It's a genetic disorder, but we never knew of anyone in our family who had liver disease. Apparently his dad and I both carry the gene, and we passed it on, even though we never got sick. [Our son] never showed any signs of the disease up until recently. Maybe there were some subtle signs that we missed – but he was a healthy kid; if I had some pictures to show you . . .
Apparently it affects one in 30,000 people.
When did you first come to Children's Hospital of Pittsburgh? What was the experience like?
It was different.
Mom: We came in for evaluation on July 16, 2002 and he was admitted on the 18th.
I was upset when I couldn't go home then. I thought I was going to be able to leave, but instead found out I'd need a new liver. It was frustrating to wait, day to day, [and have] all the tests. I kept saying, "I don't feel bad, I'm not sick enough to be here." I couldn't eat or drink for the nine days before my surgery.
Mom: I had to fly home, and his dad stayed here with him during that time.
I just hung out in bed, watched TV, and we took walks – we walked outside a little.
When you first realized you would need a liver transplant, what were your feelings?
I had to get it done. [I felt like I was] mentally ready. My dad had a kidney and pancreas transplant in 1995, and another one last year.
Mom: So it wasn't totally foreign to us. He saw his dad go through it, and saw all the pills he takes and everything, so he had an idea of what to expect.
What I didn't expect was what it would be like afterwards.
When did you have your transplant?
July 27th, 2002.
Mom: His 15th birthday was on the 24th.
The doctor came in [that day] and said, "I don't have a liver for you today, but I'll have a late birthday present for you." And by that weekend, they had found [a donor liver for me]. It had been nine days since I was admitted.
Mom: We were very fortunate that the wait was so short.
How do you feel now that you've had your transplant?
Wanting to get out of here. There was pain the first day [after the transplant], but it went away.
Mom: The first time he tried to sit up [after the surgery], it took three people to help him get to the edge of the bed [because of the pain]. But the next day he said, "I want to do this by myself," and he did. I think the hardest part for [him] is, you get pulled out of your life. He missed summer vacation, his birthday, and school's started now; he's already missed the first couple days of high school.
What information or advice do you want to share with other kids who need transplants?
Hang in there, and stay strong.
Mom: Do what the doctors tell you to do; they know what they're doing. The one thing gotten all of us through this more than anything else is faith in God. We had faith that God would give [him] what he needs, and he did. Ask for strength, and you will get it.
Help your child understand liver transplantation by viewing Hector's Liver Transplant Story.
