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Transplant: BK Virus

Transplants | Last Active: 1 day ago | Replies (120)

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@lmcarmichael

Hi @danab, I just realized I didn't respond earlier. I too was lucky enough to experience c-diff (and norovirus) in 2019 while on a trip to NYC to visit my son in college. Ended up in the hospital for most of the trip, thankfully it was pre-covid! I was also diagnosed with CMV at about 14 mos post transplant. They keep an eye on it, but our hearts are not "brand new" so some of it may have been from my donor.

I have my appointment with the Urologist tomorrow so I'm keeping my fingers crossed that he will say yes to an irrigation or have some other option. It's been about a month that they reduced my cellcept and it still hurts but I also know from what I've read that it can take several months. I guess it's something else to chalk up to transplant life.

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Replies to "Hi @danab, I just realized I didn't respond earlier. I too was lucky enough to experience..."

Hi @danab, I'm finally responding with an update about the BK Virus treatment. I saw a urologist who put me on Oxybutynin, it's supposed to help with the bladder urgency. I also had a cystoscopy. That confirmed scar tissue and ulcers in my bladder from the BK. No cancer. My infectious disease team spoke with my transplant team who agreed to lower my cellcept to 250 x 2 per day. That is the lowest they'll go due to previous rejection issues. I know there's no treatment beyond this for the ulcers. I had them in my mouth before I know what I'm dealing with. I just wish there was something for the pain. And I don't want anything addictive. just tired of it all. Hope ya'll had a nice holiday.