Hi @caretakermom 😊
I totally understand your concerns and worry! I feel the exact same way as you do. Anytime a new virus is diagnosed or a new symptom shows up or there is a medication change....I worry, just like you. The only thing that calms down is reminding myself that the transplant team has seen all of these situations a million times. Also, the adverse reactions of the meds include every possibility. But the probability of many of these adverse reactions can be very low and it still needs to be listed on the drug literature as a possibility.
I don't know if my meds will be returned to the higher dose once the BK virus is gone. Right now, I am looking forward to seeing a negative test. I tested positive in August and I am still positive for BK. It's a concern, but I try not to focus on it until I have my blood test results every two weeks.
With a transplant, it seems there is always something going on. But the great news is that it's not dialysis three times a week! My mother is on dialysis and it's not an easy journey. My transplant, with all of its challenges is definitely superior! ❤
Regarding your next follow up appointment, I think once there is a medication change or recurrent infection, they like to have a follow up appointment. How many weeks or months did the doc suggest until your next follow up appointment? At the one year anniversary or sooner?