Transplant and not on Dialysis

[coldhoist]

Just a quick question. Is it possible to be on the waiting list for a kidney transplant and not be on dialysis?

[iolaire]

Just a quick question. Is it possible to be on the waiting list for a kidney transplant and not be on dialysis?

Yes when you reach some level of kidney failure you can go on the list.  I was listed late 2011 and started dialysis late 2013 and am still waiting with no challenges for a successful transplant i.e. no sensitized levels. (I have received calls as a low level alternate for extending criteria kidneys, but since the allocation change in 2015 to give credit for time on dialysis I now only get the calls about twice per year.)

If you are not yet on dialysis and have a GFR of 20 or less, you can already begin building “wait time” on the deceased donor transplant list.
source: https://www.kidney.org/atoz/content/transplant-waitlist

[coldhoist]

Thanks for your reply. I was wondering if that was possible.

[cattlekid]

Yes, and I highly recommend it.  There are members here who have received transplants who did not have to go on dialysis first who can share their stories.

My biggest piece of advice is do NOT wait for your nephrologist or dialysis center to refer you for transplant.  Many transplant centers will allow you to self-refer if your GFR is 20 or under.  Look around, see what transplant centers are available to you and check out their policies on self-referral.  If they don't self-refer, stay on your nephrologist to refer you.  Less time on dialysis is better.  With the new rules, you will accrue time based on your dialysis start date but getting the process started and understanding what hurdles might be in your way is important. 

You will learn quickly as a dialysis patient that we are are own best advocates. 

[tigtink]

I could not agree more with cattlekid, only I will go even farther. The new allocation rules are dramatically reducing the chances of getting a transplant before dialysis, even though pretty much all the studies show that long-term outcomes are better with these preemptive transplants. This is especially true for deceased donor transplants where the wait times have been steadily increasing. UNOS actually recommends starting the listing process with a transplant center once eGFR reaches 25% or even at 30%. Most transplant centers will allow you to do the testing once you are at 25-30%. You just cannot be listed until you reach 20% or below. Since it can take many months to get approved for the list, starting the process as soon as possible gives you a better chance of accruing time before you reach dialysis.  Very few doctors or nephrologists will make a referral that early unless you ask them to do so. And it is possible for some people to make treatment and lifestyle choices that extend pre-dialysis time. I know: I first went below 20% 6 years ago and had my fistula put in nearly four years ago and my last GFR was 18%. I've had to work hard at staying healthy, and some of it is luck, but it is possible. Don't wait until a doctor tells you to get listed. If you want a transplant demand to begin the process as soon as the transplant centers let you start the process, and UNOS is saying the time should be when your GFR is 30% or below.

[tigtink]

I just found the following recommendations to doctors on the government OPTN transplant site:

"Physicians are encouraged to refer all medically appropriate patients to transplant once a GFR of less than 30 mL/minute is reached in order to

provide sufficient time to consider and become educated about transplantation, complete a transplant evaluation, and possibly locate a potential living donor."

Source: https://optn.transplant.hrsa.gov/resources/guidance/educational-guidance-on-patient-referral-to-kidney-transplantation/

[iolaire]

I just found the following recommendations to doctors on the government OPTN transplant site:

"Physicians are encouraged to refer all medically appropriate patients to transplant once a GFR of less than 30 mL/minute is reached in order to

provide sufficient time to consider and become educated about transplantation, complete a transplant evaluation, and possibly locate a potential living donor."

Source: https://optn.transplant.hrsa.gov/resources/guidance/educational-guidance-on-patient-referral-to-kidney-transplantation/

I second this and @cattlekid's comments and will add if you have a nephrologist who is not suggesting you get listed at every appointment and you are under 20 GFR then I'd recommend looking for another nephrologist.  Mine bugged me for about three appointments at least (quarterly) until I got listed.  It took some good prodding, as did getting the fistula in advance but overall it set me up quite well for moving into the dialysis stage.  I actually got a call for a kidney a few weeks before I started dialysis (but now three years later am still waiting).

[cattlekid]

Thanks to all for clarifying the new rules. 

[coldhoist]

My doctor never told me that I could be on the waiting listing before starting dialysis. My GFR was down to 6 in June of last year and I was not on dialysis, but nobody ever told me I could have been on the waiting list.
I wish I had found this website years ago. Live and learn.