They moved the goalpost again on me

[tigtink]

I'm in Chicago waiting for a delayed flight back to Lansing. Yesterday I went to Madison for a re-evaluation appointment. I now have 1106 days accrued there, just over 3 years. When I went to the initial evaluation in 2014 the average wait there for blood type O was 896 days. I found out yesterday that due to the changes in the alllocation rules that went into effect at the end of 2014 the average wait time for type O at Madison is now 1975 days, which is about 5 1/2 years. Apparently they had an influx of applicants who had been on dialysis more than three years and they all moved ahead of me on the list. It looks like preemptive transplants are going to be rare going forward, at least at Madison.

This means that I won't even reach the median time to transplant at Madison until June 2019, and there's no guarantee it would come then. I REALLY want my transplant there for a variety of reasons  but I have no idea whether I can hold off dialysis that long. I've been at 15% for the last couple of months and am doing well but who knows how long I can remain stable.

I can probably get a transplant this year at Toledo if I transfer my 33 months accrued at U of Mi but I have some serious reservations about their program. It is not my second or even third choice at this point. There are a couple of other centers in MI I want to call and see about their wait times but they may tell me the same thing about the extended wait times.  It is all extremely frustrating and there seems no end in sight. I go to the pool and work out every day just to keep busy and stay sane. Every time a transplant seems to be on the horizon the horizon slips further and further away. Maybe one day.

I remain thankful I am doing so well without dialysis. I have much to be thankful for. But this waiting stuff is getting old.

[kristina]

Hello tiktink, I can understand your frustration and I also understand your dilemma when the waiting is not that long in a " second or third option" ...
But at least you know for sure that you are waiting in the best place & the very best option! ... I have been on the waiting list for over a year in a hospital I have researched beforehand very carefully and I feel very confident that the transplant-team there will give me the very best chance... and to know that is worth a lot! ... Of course, I have to be very patient on the waiting-list, which is 3-4 years, but at least I can feel confident about the experience and great after-transplant-care at this hospital and so I just try my very best to remain as fit and as healthy as is possible under the circumstances and I wish you the very best of luck from Kristina.

[MooseMom]

Oh tigtink, that's a terrible story.

Does a hypothetical dialysis patient who has been on the list for 3 years automatically move ahead of a hypothetical patient going for a pre-emptive transplant who has also been on the list for 3 years?  Do dialysis patients get priority?

I'm really surprised by your post!  I'm also really sorry.  I feel frustrated just reading your post!

Are you still going to list at Madison?

[tigtink]

Moosemom, the way the system works under the new rules is that if you are on dialysis when you get approved for the list your listing date is considered the date you began dialysis. So anyone who is approved for the list at Madison who has already been on dialysis for more than three years moves ahead of me on the list even if they were just approved this year. And judging from the number of transplants they did at Madison last year, breaking all of their previous records, and given how low I am on the list it is clear that at least 200 people who were approved after me have had their transplants already. I don't think it is unfair because they have put their time into many months on dialysis so they deserve to get priority. But it sucks for me. If not for the change in rules I would most certainly have had my transplant before now. I am lucky in that I am still doing OK without dialysis 3 1/2 years after getting my fistula, but it means a much longer wait than I was originally told.

I am going to remain on the Madison list and see if I can hold out long enough to get it done there. I am so impressed by them and my sister lives 20 minutes from the hospital. I just don't want to have to end up on dialysis while I'm waiting so Toledo is my backup plan in case things take a nosedive. I am accruing time there as well as at U of MI.

[Simon Dog]

Does a hypothetical dialysis patient who has been on the list for 3 years automatically move ahead of a hypothetical patient going for a pre-emptive transplant who has also been on the list for 3 years?  Do dialysis patients get priority?

First off, kidneys within a top 20%  KDPI (kdiney doner profile index) are reserved for recipients with a top 20% EPTS (Estimated post transplant survival).   If you are 53 or over, you're not in the top 20%.

The waitlist is not time but points.   You get points each year of wait time (I think it's one point).  You also get points if you have a very high PRA (since you  are so hard to match), and you get a shitload of points if you have a history of being an organ donor.  Sorry, you don't get points for fecal or bone marrow donation - you have to donate something that hurts to lose like a kidney or a liver lobe.

[MooseMom]

Simon Dog, yep, I get the difference between time and points, and I get the whole KDPI thing.  I suppose my hypothetical situation assume that both patients in need of a tx are of the same age/KDPI.

Tigtink, thanks for the explanation, but I must be thick because I'm not sure I understand.  I guess I am asking if, under the new rules, just being on dialysis gives you priority over someone who has been on the list for the same amount of time but is not yet on dialysis.  We all know that some people can hang on and feel relatively well at egfr 15 while others need dialysis at egfr 18.

I got my tx under the old rules, so I am unclear on how the new ones work.  I know in some countries you can't even get on the list unless you are already on dialysis list; there are no pre-emptive cadaveric transplants.

[Simon Dog]

  I guess I am asking if, under the new rules, just being on dialysis gives you priority over someone who has been on the list for the same amount of time but is not yet on dialysis.

Nope.   Being on dialysis can retroactively set your wait list start time.   If you go on D for 4 years before you list for xplant, your waiting time starts for years before you listed (ie, the D start date).

[tigtink]

Latest labs just came back and they look pretty good: creatinine 2.78 GFR 18% BUN 74. Better than last month. Potassium was a bit high at 5.1 but I ate a few things on my trip to Wisconsin that were outside my normal diet so hopefully that will come back down. I've been lucky enough to not need binders so far.

I made a couple of phone calls today but the story is pretty much the same at every transplant center within 300 miles of my house (except Toledo): the wait is 5 to 7 years. So I will keep exercising, maintaining my weight, and trying to stay as healthy as possible to keep my two little ones chugging until Wisconsin comes through. As long as dialysis is not imminent, I can afford to wait, and Toledo will always be an option as long as I stay active on their list.

[MooseMom]

I chugged along with a gfr of under 20 for  number of years, so all is not lost by any means!

The fact that you do not yet need binders is a big plus!

Please keep us updated.  It sounds like you've got a good plan for yourself.

[iolaire]

I'm five years in and used to receive more Expanded Criteria Donor calls prior to the change in the wait time system.  Since then I feel there has been a significant drop off in calls (still as a far down the list alternate).  Now at the five year point its starting to bother me a bit more on how long the wait is and make me think more of moving my time or listing in another region.

[tigtink]

I understand the frustration. So few people understand all it takes to get on and stay on the transplant list only to find the wait times gettting longer each year.

[Tora66]

The waiting is torture! My center! UW in Seattle has an average wait time of 3 1/2 years. I'm still waiting now four years on dialysis. Received two calls. One last year. One today, no call back.