The wait

[Sunny]

It's so difficult on the psyche waiting for transplants.
I've waited at least 6 years now on the cadaver list. I've gotten used to that.
Right now I'm waiting for the definitive answer about whether my oldest sister will qualify as my living donor. She started testing in January and it's been six months now. This week the transplant coordinator told me they will have an answer for me by the end of July. The waiting game feels very real to me now. It's more stressful than ever. Please tell me what it's been like for you to wait. Maybe you can calm my nerves!

[Jie]

Except those who have had transplants, everyone here is playing waiting games. Your waiting of 6 years seems a little too long, and living donor evaluation should be completed within 2 or 3 months, not 6 months. So, your center may not be a ideal place to wait for and do transplants. Only thing we can do is to call the transplant coordinator often to make sure that they do not forget about you.

[paris]

Hi Sunny, you and I have been holding each others hands for quite awhile now.  It really doesn't get any easier, does it?    And when someone is being tested, the waiting for anwers seems even harder.   Since our situations are similar, I think we both know the wait could be longer than we had hoped for.   Evaluations vary so much and it largely depends on the donor and their schedule.  If they can't find time for the tests, the process slows done.  So many things factor in to it.  But, you know all this because you are so informed and on top of everything.    We'll just keep waiting together---I am hoping you get the kidney from you sister soon.        Or tonight you could get the call from the center!   We are here for you   

[RichardMEL]

2-3 months? I don't think so.

Down here, at least, they factor in time deliberately - not just for all the tests, but as a measure of how serious the prospective donor is - if they stick it out etc. It also gives time for the full reality of the proposed donation to sink in for everyone involved. I seem to recall being told that it was more like 6 months here for those reasons. Of course my brother has been stuffing around with a possible ABO incompatable transplant testing for just on a year now so..... everyone's mileage can/will vary.

I've only been waiting abour 4 and a half years, but definitely the waiting is one of the hardest things to do. Everything seems like it is on hold waiting for that minor miracle and you just don't know when it will happen.

I hope it will happen soon for you Sunny (and Paris of course)

[Jie]

I guess different centers have different evaluation time frames. If the center wants to work fast, a donor evaluation can be done less than 4 weeks. A director promised me to get an evaluation within one month for my sister, if necessary. A normal lab work and interviews can be done within two days and the results are back within one to two weeks. In the U.S., a lot of centers want to save money, so the lab work is done by two or three time intervals, which needs a little longer times. In socialism-medicine countries, it may take longer, since it needs more time to schedule some lab work. A normal evaluation to last for more than 6 months is not acceptable. ABO incompatible transplant is more like a special transplant, and many transplant centers will not do such transplants. 

[Sunny]

The cadaver wait also depends on blood type and PRA levels, along with where you live here in the U.S. I live in the San Fransisco Bay area, have O Pos blood and 96% PRA so I am told I have the longest wait for cadaver transplants. I think Richard may be right about living donors. Maybe they take a long time on purpose so donors will have ample time to think it over.Also, I can check the UNOS list and have noted that my transplant center averages about 40 cadaver kidney transplants per year so I don't think they're making up stories about the cadaver wait list for me. I'm not stressed about the wait time for a cadaver kidney because I know that will take a long time. I'm just stressed about this last 30 days of decision making regarding my sister.

[Jie]

Sunny,

San Fransisco is one of worst areas for waiting for a kidney. Blood B is even worst there, 8-9 years.  You are not too far away from Oregon or Utah, good spots for a kidney. Why are not listed in these two states? If you were there, you should have gotten your kidney a long time ago.

[paris]

Sunny,

San Fransisco is one of worst areas for waiting for a kidney. Blood B is even worst there, 8-9 years.  You are not too far away from Oregon or Utah, good spots for a kidney. Why are not listed in these two states? If you were there, you should have gotten your kidney a long time ago.

Unfortunately, with her blood type and PRA, it is a long wait anywhere you go.  I have been listed at three centers, including Johns Hopkins, and they all agree type O with extremely high PRA is the longest wait.   Finances play a huge part in being listed away from your home. 

Hang in there Sunny.  Let us know how your sister's evaluation goes.