TRIO

TRIO Youth Circle: Questions & Answers

You may have many questions about the transplant experience, here we answer those from the vantage point of youth . . .
(e-mail your question for consideration to: info@trioweb.org and put "Youth Q&A" in the subject line)

Sandra, a 15 year old two years post kidney transplant asks:
"I'm feeling fine, except for these pills and their side effects. They are such a pain. I want to be 'normal' like the other kids again. Can I stop taking them now that I'm out so far from that transplant surgery and doing well?":

Valen answers:
Absolutely not. I can’t stress enough how very important it is to take our medicine every day and to take it on time. This is a vital part to keeping us healthy and having our transplant last as long as possible. If you are having problems with side effects, I would suggest talking to your doctor about them if they are unbearable.

Joe, a double lung recipient out 3 years, asks:
"How can I get in touch with the family of my donor? I feel such a sense of gratitude and want them to know how much I appreciate this gift of life."

Jim answers:
This is a common feeling and given the anonymous processs of organ donation, it may seem hard to communicate and you may never hear back, but your local OPO (organ procurement organization) will provide guidance and support in conveying a letter (without any specific identifying information in it) to your donor family. Assume they received your letter and don't expect anything in return. If they do want to respond, they too will do it through the OPO and in some cases, eventually there may be a meeting face to face arranged through the OPO. Just don't expect it. It certainly is a good thing to write that letter of thanks and many donor families would love to have received one from the recipients of their loved ones gifts.

Joanne, an 18 year old recipient out 1 year asks:
"I had a kidney transplant and have been getting lots of urinary tract infections (UTI’s) Have you experienced this, and how have you dealt with it?"

Valen ansers:
Yes, following my transplant, I had a lot of UTI’s. My doctor suggested I try cranberry supplements. I now take cranberry supplements every day and have not had one since then and it has been almost 3 years now since I had a UTI. (knock on wood)

John, a 15 year old heart recipient out 4 years asks:
"I am on steroids and am having trouble with the weight gain. Do you have any suggestions?"

Valen answers: I put on 35 pounds after my transplant due to being on a high dose of prednisone. I really started to watch my portion sizes, measured everything that I ate, and exercised, and I was able to lose the 35 pounds, get back down to my normal weight and have kept it off for 5 years now.

Other areas of question and concern for future discussion:

Problems with body image...?

Are you having trouble in dating or having a relationship because of your transplant/condition?

Are you finding it hard to connect with others your age?

And now, do you have a question?

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