Hi @roxanne12345 😊
It's great to meet you! Congrats on your 4 month post kidney transplant anniversary!
I am almost at my three year post kidney transplant.
We have so much in common! Very thankfully, my new kidney is working well too.
My only challenges are coming from the immune suppression meds. When I was at my 4 month anniversary, I was taking 1000mg bid Mycophenolate and 6mg Envarsus XR (Tacrolimis) and it gave me adverse side effects like neutropenia, leukopenia, high liver enzymes. So, I was going to my local cancer center for Procrit shots on a regular basis.
At 8 months post transplant, I tested positive for active CMV virus so my Mycophenolate was lowered to 500mg bid and Valcyte was added. My CMV was at <200 in 6 weeks. My neutropenia resolved after the reduction of Mycophenolate.
At my two year anniversary, I tested positive for BK virus. My Mycophenolate was reduced in half again to 250mg bid and 6mg Envarsus XR (Tacrolimis). It's been 5 months since my BK diagnosis and I am still testing positive for BK virus, but the numbers are improving.
Do you have BK virus now and was your dosages reduced?
Was your blood clots caused by the BK and what was the solution?
(I also am now taking Biotin for the hair loss. But my infections have been taking center stage in my list of concerns. I actually think the hair loss is showing a slight improvement with the Biotin).
@roxanne12345 Please let me know about your dosages and meds and if your BK virus, neutropenia, and if your blood clots have resolved with the reduction of immune suppression meds.
The transplant teams see this all the time, so for them it's just another walk in the park. I have full confidence that"all will be well" for both of us after the med adjustments reach the perfect levels to avoid infection (and not allow rejection). It's a balancing act for sure! ❤