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Transplant: BK Virus

Transplants | Last Active: Jan 14 5:21am | Replies (117)

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@lmcarmichael

Hi @colleenyoung, nice to meet you. I'm on a blood thinner due to previous pe's. Honestly, my bladder is just so irritated I've been thinking that it would feel good even if painful. Just to clean out the yucky tissue. This is the second time around. I had CMV and BK for a year. The CMV went away and the BK went down then the BK went up signaficantly about 6 months ago (at least the pain has, wasn't tested until recently).
Infectious disease worked with my team and reduced my cellcept to help get rid of the cmv. They haven't made any changes to improve my eGRF due to fear of rejection for my heart. So complicated.

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Replies to "Hi @colleenyoung, nice to meet you. I'm on a blood thinner due to previous pe's. Honestly,..."

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.