Wait time just got longer

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I'm a little discouraged. I've been on the wait list at U of WI Madison for 19 months now. I've been on the list at U of M Ann Arbor for 22 months. So far I've avoided dialysis and I'd hoped a transplant might come in the next year. Yesterday the coordinator from Madison called and told me it would likely be another 18 months or 2 years before I got called for a transplant there. According to her, the new allocation rules pushed me lower on the list because of backdating other candidates to their dialysis start dates. The wait in Michigan is even longer. I'm still at 16% with creatinine 2.97, but I don't know if I can hold out for another two years. My creatinine came back as 3.35 two months ago but has since come down a little. I am weaker than I was even a few months ago, although my other labs are all in the normal range, except hemoglobin which I am treating with Procrit.

I'm thinking about getting on the list at Toledo since their wait time is significantly shorter than Madison. I could eventually transfer my wait time at U of M to Toledo and perhaps get a transplant sooner.

The whole thing is so frustrating. I'm struggling to keep my weight down but I am retaining more and more fluid. They don't take that into account when figuring BMI. So I will probably need to lose a few pounds if I want to get on Toledo's list. I know dialysis is not the end of the world, and if it comes to that I will do it. But I'd really hoped to be lucky enough to avoid it with a preemptive transplant. Right now, two years seems like a long way away.

[Deanne]

 

That's depressing news. I'm sorry. I ended up on dialysis a few months before transplant. I was hoping to avoid it, too, but it wasn't to be. It wasn't as bad as I thought it would be. I hope you find out the same thing if you can't hold out until transplant.

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Thanks for the reassurance, Deanne. If it comes to it, I will do dialysis and be grateful for it. The whole transplant thing is full of so many uncertainties. The doctors cannot predict when the kidneys will decline, the system for allocating kidneys has so many variables, and the data about average wait times at various centers keeps changing. I might have made different decisions about where to list had I known the wait at Madison would be four years. It just seems I am constantly having to adapt to new realities, about what my health will allow me to do on a daily basis, about how long I might have before I need dialysis, and about when a transplant might come through. Then there are all the risks and uncertainties that come with a transplant. I guess it is all just a part of dealing with kidney disease. I just keep trying to live my life in spite of it all and take each day as it comes.