This interview was conducted with a 10-year-old boy who received a small bowel transplant after suffering from a spontaneous volvulus of the small bowel.
When you were first diagnosed, did you have any idea what it meant? How did you learn more about it?
I didn't do any research, she did. [Points to mom]
Mom: I did a lot of research, mostly Internet searches. [I found that] MedScape was helpful. [Another good website] is Gifts from Heaven. They pass along information and support to families [of kids who need transplants].
Dad: She's a nurse, and she asked her supervisor at work for more information.
Mom: We also bought some books, and got some from the library. But those books dealt mostly with transplants in general; we found the Internet was more helpful for getting specific information about intestinal transplantation.
When did you first come to Children's Hospital? What was the experience like?
I first came in 2001. I had lots of tests, so it wasn't too good of an experience. Blood tests, liver biopsy, lower and upper GIs . . .
Before you had the surgery, what did you think a transplant would be like?
I was expecting lots of pills. I was afraid of rejection, and lots of pain.
When you got the call, how did you feel?
I was on the waiting list for one and a half years.
Mom: I was at work, and [my husband] called to tell me. I said, "No way." In all that time, we'd gotten used to calls. One time, we actually got on a plane [to come to the hospital and receive the transplant], but the donor family backed out. There are false alarms, so we learned not to get our hopes up.
When did you have your transplant?
July 9th, 2002.
How do you feel now that you've had your transplant? What would you say was the hardest part of the whole experience?
I have a little more energy, but it's only been a month. I'm getting there. I'd say actually getting the transplant, and realizing that I got it.
What information or advice do you want to share with other kids who need transplants?
Be brave; you'll get through it. And beware of the multi-vitamin; it tastes nasty!
