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Transplant: BK Virus

Transplants | Last Active: 2 days ago | Replies (120)

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Hi @lmcarmichael Welcome to our rather small club of heart Transplant folks. I'm coming up to my 6th year in January. So sorry to hear your having problems which seem to happen after a rather successful transplant.
I have not had to deal with rejection at all, but I guess it can happen even later in our journey's.

But I can relate to complications of the Digestive track when I came down with Cdiff and a what was called a tear in my small intestine. This was back in 2019 and so far no return. But at that time they took me off Cellcep so Im only on Tacro. Which means Im watched very closly for Tacro levels.

I have had some issues with some bleeding from my penis which sent me to a urologist. So Ive had the standard test to verify everything there is OK. I have an enlarged Prostate but its under control with Flomax and Finasteride. I also have had CMV and it also under control for the past couple of Years.

So far those have been my issues. I will say that if this irrigation is similar to something I had during an internal Bladder exam, I remember the feeling of relief when they wanted to verify my ability to empty my bladder, so they filled it up and measured the amount that discharged after. it did kind of have a soothing effect but I'm not sure that's what a irrigation would be like.

I haven't had BK so I cant speak to that. Hope that this Irrigation does help to sooth the issues and lets us know how it goes.

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Replies to "Hi @lmcarmichael Welcome to our rather small club of heart Transplant folks. I'm coming up to..."

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.