How to get evaluated for a transplant

Are you waiting to receive a transplant? Share your kidney transplant experience.
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Joined: Tue Mar 22, 2016 1:06 pm

How to get evaluated for a transplant

Postby Suze » Tue Mar 29, 2016 6:55 pm

I have been told by several nephrologists in my area that I cannot get on a transplant list or be evaluated for a transplant until my GFR is 20 or lower. I have not found a nephrologist that will make a referral for me to a transplant center until my GFR hits 20 or below. My GFR was 21 and I was told that even if my nephrologist made the referral, that the transplant center will place me on hold and not evaluate me if my GFR was not 20 or less.

How are PKD patients getting early evaluations for a transplant?

Does the type of insurance you have make a difference in this?

It is so frustrating to always be told that we have to wait to get sicker until we can do anything. Any responses and information anyone has about this is greatly appreciated. Thanks.

Kona

Re: How to get evaluated for a transplant

Postby Kona » Fri Sep 23, 2016 5:36 pm

Its been a few months since your post so I hope things are going well for you. I am in the process of going thru the evaluation for a transplant. When my GFR hit 20 (5-6 months ago) I was quickly enrolled in classes to get the education process started and then my next check my GFR went back to 22 and they stopped the process. That was several months ago and now my GFR is a 15. So my point is that it 20 seems to be the magic number to get evaluated so if you are above 20 you are good...drop to or below, they will start the process. BTW dialysis wont start until you hit at least a GFR of 15. There is plenty of time to work with unless there is some emergent situation where your kidneys fail. I know it can be frustrating but the good news is that if you numbers are fluctuating (which is normal) is much better than a downward curve which I had happen. My neph also told me that I could be at GFR of 15 for months or even years, but based on how fast mine dropped I don't think I would take that bet...Hope this helps and wish you the best. So, my GFR is currently at 15 and my creat is at 4.3 and not on dialysis...my neph is tracking the BUN number which shows how high the toxic levels are...as long as it stays relatively low, I can defer dialysis. I do feel very tired and find it hard to focus.

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