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This interview was conducted with a 15-year-old boy who received a liver transplant, and his mother.
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.
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.
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.
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.
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.
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.
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.
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UPMC Children’s Hospital of Pittsburgh
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
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