GFR fluctuation and its affect on cadaver transplant list

[Sunny]

I have been on the cadaver kidney transplant list at Stanford for 6 1/2 years.
I am type O with a PRA of 86% so I'm going to be difficult to match.
For the last 2 years my GFR has fluctuated from 14%-18% and I feel fairly lousy, but it's bearable. The docs around here don't recommend I start dialysis till about 8 GFR because I'm doing relatively well. The goal is getting me a pre-emptive transplant either living or cadaver. I am probably nearing the top of the cadaver list. When my GFR is 15 or under, they activate me on that list. When my GFR is over 15 they de-activate me and put me on #7 standby. I feel like I'm a yo-yo being toyed with. To me the difference between 14% GFR or 18% GFR feels the same and this method of the way they do things is going to drive me crazy. I have never suffered from anxiety my whole life, but last months de-activation because my GFR was 16% really put me over the edge. My labs this  month shows my GFR at 14%. I feel like I'm living on a precipice of Mt. Everest: one move in the wrong direction and I'm off the edge; a move the other direction keeps me on the fine line; and yet another move  can get me forward.I don't like living on a precipice. What can I do? How can Stanford think it's good to keep me hanging on a string like this?
I'll probably be a complete wreck by the time a transplant ever occurs, and then they'll probably kick me off because I'm no longer healthy or psychologically stable.

[Sunny]

So, is that what it's like for some of you others waiting on the transplant list?

[boswife]

wow,, what a (in my opnion) stupid or horrable rollercoster ride they have you on.  It's awful and it will take it's tole on you..  I surly dont know what to do about it, but i surly feel for you just the same.  My hubbys GFR has always bounced around but within 4 or 5 numbers (17 to 21 though it had gone down to 16 at the start of it).  They started him on dialysis i think way too early due to a sickness (cough) he was having, but some say we're actually lucky that he got on it before he got really sick.  I think we could have gone a couple of years on his old kidneys, so whos to say. Seems there's no ONE way with this stuff. 

[paris]

Hi Sunny,  I have been listed for four years with the original idea of a preemptive transplant.  Function between 12-15% all that time. They have never told me I have been put on the inactive status.  The surgeon says with my time, I have to be up there on the infamous list, but then says with 100% PRA, it won't matter anyway.   It is all confusing what they are doing to you.  You would think that once you are eligible for a transplant and under 20%, it wouldn't matter if it was 12 or 17.  Do they let you know when you are actually active or not?  You must be in a state of constant confusion.  I would be a complete wreck too   

[cariad]

Sunny, this sounds crazy! What is Stanford thinking?

I was told at various hospitals that the cut-off for the list was GFR20, and I literally got myself listed at something like 19.75 (yes, weird - that particular lab was the only lab where i have ever seen GFR listed with a fraction.) I was activated at UCSF 10 days after I went to my eval, and have never gone inactive, to my knowledge. (They do need to inform the patient, right?) They ask me for a blood sample once a year - since I am so far down the queue, they don't ask for once a month - and I have never been warned that I will be made inactive for minor GFR fluctuations.

Would you consider changing hospitals? I had heard from someone with a 96% PRA that she was listed actively at above 20, because they wanted to give her as much of a shot at transplant as possible. I really like UCSF - they seem to be sane there. Just a thought if you're looking for a recommendation. Good luck.