Nephrologist appointment

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I had a good talk with my nephrologist last week. We discussed what KDPI I should consider accepting when an offer comes in. He recommended anything 60 or below, perhaps as high as 70 if it is a good match. He has a lot of experience with Toledo transplant center and says the fact that I got a call after only nine months on the list probably means I am not a hard match. He said not to be surprised if I started getting more calls from them.

He also reassured me in strong terms about Toledo being a good transplant center. I have had my reservations because of their rigid follow up requirements since the center is a two-hour drive from my house, a bad trip in the winter when there is snow and ice, and they rank low on the SRTR reports. He does not put much stock in those ratings because he says they are skewed in favor of centers that do more transplants. One bad outcome won't affect the rankings of a center that does 300 transplants a year nearly as much as one bad outcome for a center like Toledo that only does 75 transplants a year. Toledo's wait times are much shorter. He says they have been sending people there for years and have never had a failed graft. So if I get a good offer from Toledo, I'm thinking I should accept it and figure out how to deal with the travel issues as they arise.

I'd rather get it done at University of WI because my sister lives there and they would allow me to do the most of the follow up care here in Michigan, but it could be two years or more before they come up with one for me. My numbers have been holding pretty steady at 17% but my potassium and phosphorous levels are slowly creeping up to just above normal and my co2 levels are low enough that I have to start bicarbonate tablets.  I worry about the long-term damage from 10 years in stage 4. I struggle to keep my weight down. And emotionally, after 41 months on the list, the waiting is taking its toll. So much of it really is a crap shoot out of my control. I could get a call any day from any of the three centers, or I could wait another two or three years. So I'm leaning toward going with a good offer from any of the three. Staying on the list is a lot of work, with all the blood work, tests, and constant battles with weight and various issues like anemia and metabolic imbalances. I am very fortunate I've managed to avoid dialysis, but I'm constantly reminded how fragile my health really is. I guess it is all a part of being on the list.

[KarenInWA]

I think one reason why Toledo rates low is they are the same hospital that had a live donor surgery done, and communication didn't happen like it should, and a scrub nurse ended up throwing away the kidney after it was removed. Live donor kidney transplants were suspended for a while after that.

KarenInWA

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Yes, Karen. I believe that was in 2012. It was one of the reasons I did not list there in the beginning. My nephrologist seems to think they have corrected those issues. I know they have regulators hovering over them which probably accounts for how strict they are in putting people on their list and giving them follow up care. I was told that University of MI would be able to take over my care after the first year, and they are only 45 minutes from here. I guess when the right kidney comes in its best to go for it and figure out the logistics later.

[Simon Dog]

I had a good talk with my nephrologist last week. We discussed what KDPI I should consider accepting when an offer comes in. He recommended anything 60 or below, perhaps as high as 70 if it is a good match.

My neph suggestes 60 or below.  The transplant nephrologist at Tufts was adamant I should accept anything < 85, but confirmed I would not be shitlisted if I declined an offer to wait for a better unit.