How do I get on a donor list?

[Marvila45]

I have CKD for more than 30 years. Controlling diet has been a key to avoiding dialysis. Now my GFR has dropped to 22 and most likely I will go into dialysis.

[WYOAnne NKF Ambassador]

How it worked for me, was that my doctor referred to a nearby transplant center in my state. They set up an appt for me. I went to the appt and was assigned a transplant coordinator and was added to the UNOS kidney transplant list. The coordinator set up with my local doctor to send her labs, etc, When I started dialysis I was moved up the transplant list.

[Frankie24]

I was referred by my nephrologist to their transplant center for evaluation etc. though I think you can refer yourself in some cases. I was assigned a transplant coordinator, team and began testing. I am currently at 15 % gfr being prepared for dialysis and my nephrologist said he would like to try to wait until 10 % if possible. I am guessing you should speak with your healthcare team. I am working towards getting a living donor kidney but will also go on UNOS when I complete all the test and if everything checks out o.k.

[EndStageRenal]

Realistically you should come to terms with going on dialysis--this will be required before you can really be considered for transplant. A Nephrologist will probably keep you off dialysis until your GFR gets to about 10. If you're at 22 now you probably still feel pretty decent. My experience was that once I got below 20 I really started feeling terrible--especially from the anemia.

Don't be afraid of dialysis--the schedule is a nuisance but it makes you feel good again for the most part. Start talking to family and friends about being a live donor. That could shorten your time to transplant.

[KidneyCoach NKF Ambassador in reply to EndStageRenal]

Here in the U.S. you may be referred (or self refer to some places) to a transplant center. They will first send you to a class, draw lots of blood for multiple tests, urine, other testing will be scheduled like echocardiogram, EKG, chest X-ray, take a health history, assign transplant coordinator, meet with surgeon, nephrologist, social worker and financial coordinator. Then they committee meets and decides if the person is a good candidate and approve and list you on the regional transplant recipient list (which also lists you with UNOS). Many people have received transplants before ever going on dialysis. In fact, it is encouraged. Preserving any current residual kidney function is really critical so try not to push or jump on the dialysis wagon too soon. Have you taken a look at kidneyschool.org ? They have a couple of informational segments on transplants and the process. Blessings