@caretakermom

Hi Caretakermom;

Sorry no answers and I just feel like we are just getting the runaround. We met with my wife's Nephrologist (at Mayo Phx) and she downplayed Belatacept (not a no, but) and suggested that she would be going to "The Committee" today 8/13 for a discussion on a possible switch of anti-rejection drugs but she was leaning toward Everolimus (as it has anti-cancer properties - that has been another struggle we face in addition to the transplant). Our read on that is not so favorable as (at least according to AI - which has been wrong a lot on this journey) almost 40% of people switching to Everolimus end up changing again 6 mths to a year) due primarily to proteinuria but high blood pressure and edema are also serious issues.

I did find a good study out of Japan on Belatacept transition (on NIH website - still looking for the one from Dr. Hamash - they could not find it in the Mayo library Tuesday) I will email him and see if there is a draft or something we can "acquire". The bad news was the study did not find any change in blood pressure (as AI has been noting) but did find something like 5% gfr improvement.

Not sure where we can go from here but her sodium s is pretty low again sub 125 (it may be SIAHD but Mayo is not giving a firm diagnosis) and every time they add fluid restrictions her labs really go downhill (high Tacrolimus, potassium, ... - guess what kidneys love water).

My theory is we are on Pickett's charge with Tacrolimus. If we are part of the 40% who live we will be captured and live in prison, (dialysis, in the unlikely event she will even try it - for the rest of her life), so why not change course (you can't be afraid of 5 or even 10% transition risk at this point)? Not very good options. We can't understand why she wasn't transitioned off Tacrolimus long ago but I guess we were not aggressive enough for change. Now with 30% scaring there are no attractive options.

Not sure why we have such divergent ideas from the Drs. Transition risk is real, cancer recurrence risk is real but if you have a stroke, heart attack, or further degrade gfr with more Tacrolimus scaring the situation just looks worse every day. Perhaps they just feel it's a no win situation, so best do nothing (and don't waste their time or resources)? I am very sad to admit it but we have heard more than once from Mayo Nephrologists that we are 8 years into a 10 year (live kidney transplant life) so what do you expect? I know I am getting to cynical here but after the last 6 months of no changes, no progress, no answers (like almost everything in the Transplant world) it is rough on everyone.