Hi @caretakermom 😊
That's good news! If your hubby was running with a WBC in the range of 4 to 5 when he wasn't taking Valcyte, then the removal of Valcyte should return his WBC to that range very soon. (The body just needs some time to clear the drug out of the system). I am very hopeful for the next labs.
Did your provider mention the timeline regarding restoring your husband's dosages back to what he was originally taking? Is there a possibility that they may hold at the reduced dosages for a while? I stayed at the reduced dosages after my CMV and I still got BK even at the lower levels of immune suppression! Now, my immune suppression has been lowered even more to beat the BK. So even at the CMV reduced dosages I was over-immune suppressed and got BK. Each patient is different and it takes a lot of tweaking to get the right cocktail of dosages/meds that avoids rejection but also avoids these constant opportunistic infections. It's definitely an on-going stressful process.
It's two months and I am still fighting my BK virus. My viral load has been coming down a little each week, but it's defintely still there. I heard it can take months to a year to finally clear BK.
Do you know about how long it took your friend to finally get rid of BK? After she cleared the virus, did they raise her immune suppression again or keep it reduced to try and avoid a relapse?
Thank you for the discussions!! I think it's super helpful to share experiences. Unless you're a transplant or caretaker, it's hard to understand these situations..."CMV, BK, Valcyte, reduced immune suppression, WBC, Tac, etc".... It's like we have our own transplant language!!! 😊