*** If you got the call (for a transplant), what should you ask?

[TeenHatesDialysis]

Great list! If the antigen match was 0 or 1, would you decline? I know of a child that had been on dialysis for 2 years and her mother declined a 1 antigen match, because she wanted to hold out for at least a 2 antigen match and now the little girl has been on dialysis for 3 years.  I wonder if she wishes she would have accepted the 1 antigen kidney

My daughter is listed out of state and sometimes I think OMG we will have to jump on a plane at a moments notice and be out of state for 4 months, but I am 100% confident that the transplant team at LPCH (Stanford) will make the best decision for my daughter. I have made a copy of the list and I know I will be reading it while I'm on the plane and want answers, but they are the experts and I trust that they will get my daughter a perfect kidney. A perfect kidney this summer would be great!  My phone is on and I am packed for the airport....ready and waiting....anytime...

[Zach]

 

Any thoughts?

 

[RichardMEL]

Gee that is a tough question. I had heard or read somewhere that these days they consider the difference between say 2 and 1 HLA matches to be a bit small and it might be worth going for it. I would really tend to rely on what the doctors thought. I think it might come down to, for me, the situation of the kidney itself.. eg: was it in an accident, was it from an older or younger donor, did they have anything else known like high cholesterol or stuff like that. I might be more willing to accept an organ with a 1 HLA match from say a 28 year old who had died in hospital of say a brain tumor or something than say a 54 year old who died in a car accident..... if that makes sense.

It's a really tough question that's for sure and one of those choices in life that you just have to make - for better or worse.

[pamster42000]

When we received the call back in Nov. 2 ,2000 Sarah and I had just returned from her transplant center that late afternoon. She had a procedure done that day. I was actually surprised because her antibodies were elevated and it would be hard to get a match.

We went thinking it was going to be a trip for nothing. When we got there they ran all the tests that are done and by the next morning Sarah was receiving dialysis so she could get the transplant that day. A young man had been in an auto accident and for some reason his antibodies were high and was a close match to Sarah. Just goes to show miracles can happen.

I guess we put our faith in the Dr.s and didn't ask many questions. I did ask one Dr. about the high antibodies and he snapped at me sayings, " Don't ask alot of questions, she's getting a kidney".

[okarol]

Trust, but verify.

OK Zach

What are the questions you would ask??

  

[murf]

I am so desperate for a transplant that the only question that I would ask is: "where do I send my thank you card"?

[Riki]

When I got my first kidney, I was in the hospital, so I didn't get a "call," the nurses came into my room at 4am and told me.  The problem that time was finding one of my parents to sign the consent form, because I wasn't old enough to do it myself.

The second time, the only question I had was, "how long do I have to get there?" because it was a holiday and I knew it wouldn't be easy to find my parents.  I actually had to call them and tell them I was coming, so they wouldn't givie the kidney to someone else.

My exboyfriend remembers that day well.  He said that after he handed me the phone, cuz he'd answered it while I was getting ready or work, all the color drained from my face.  He thought I was going to pass out, so he stayed close to me, just in case.

[jbeany]

Heck, all coherent thought leaves your head during the initial call, anyhow.  Whoever called me had very few answers for me about the donor - my regular coordinator was on vacation, which didn't help.  I did ask a few pertinent questions when I got to see my surgeon at the hospital, like gender, age, health status, how good of a match.  Really, I don't think much would have caused me to turn it down, but he assured me that there was no history of drug use or anything to make him question the safety of going forward.  By the time I got to see him, though, it was some 18 hours after my initial call, so I'd had time to think things through, and remember what I was supposed to asking.

[okarol]

 

[Riki]

I don't know if I would start asking questions, even if I waited hours for the kidney.  For the last one, I arrived at the hospital at 9:30pm, and I didn't go to the OR until around 5 the next afternoon. I still don't think I would ask a lot of questions.  My doctors tended to answer all of them without my having to ask, and some we found out by listening to the nurses at the nurses station.  Sometimes having near perfect hearing comes in handy.. *G*

Friday is the anniversary of my first transplant, October 1, 1992.  Nineteen years.  I wonder about the family of the donor, and if they still mark the date.  I used to regret not writing to the donor family when I had the chance, but I'm kind of glad I didn't now, since the kidney only lasted 8 years.

[Zach]

Should we ask if the donor is CMV positive?

[cariad]

Should we ask if the donor is CMV positive?

If you are CMV negative, then yes. Same for EBV.

Way to think ahead!