@hello1234, thank you for checking in on us. I am so sorry about your BK recurrence but I have faith that your team will resolve it! @somdaydialysisfree has a very positive attitude and I admire that!
@somedaydialysisfree, are you doing dialysis at home or in-center? My hubby was on dialysis for 3 years before transplant and he did PD(1year) and home hemodialysis(2years). You have a great attitude and I hope you can recover from BK soon and get off dialysis/get second transplant.
My hubby had his 1 year check up this past week, we got most of the labs back except for the antibodies(test for antibodies against transplanted kidney I don't know technical name!) and the 24 hour blood pressure results. I'm nervous about the antibodies test because he is off Myfortic and I don't know if that's going to affect the antibodies result. Fortunately, hubby has stayed free of CMV since they changed his immuno suppressant drugs. The transplant neph says he has been CMV free since the latter part of Nov 2022 so they're gonna stop testing for CMV on the standing order. I ask if possible it will recur he says there's 1% chance. Our local neph does test for CMV and BK and a bunch of other labs periodically, we see him every 2-3 months. My hubby has not had BK so no experience there. My friend did have BK 4 months after transplant but her numbers were in the thousandths, not millionths. The transplant team treated her BK the same way as CVM - lowered the meds and then start Valcyte and prednisone. Her BK did resolve eventually but she had a tough time getting her local neph to drop the prednisone. Her meds were restored to her normal dose once BK resolved. She did eventually get permission from the Mayo neph to drop the prednisone though. To my knowledge, her BK has not returned and she has since had her 3 year checkup.
I'm sorry your BK recurred and I don't have any knowledge about BK to give any constructive advice. Per our nurse coordinator, CMV does not damage the transplanted kidney but can be deadly(CMV+pneumonia), which is why Mayo took over following my hubby when he first had it!! BK virus however can cause damage to the transplanted kidney and lead to kidney failure. The protocol to test for BK virus is every 6 months at Mayo Az.
Wishing you all the best. Please keep me posted on how your team plans to treat your BK recurrence.