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Transplant: BK Virus

Transplants | Last Active: Apr 16 10:39pm | Replies (120)

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@lmcarmichael

Hi, I'm new here but read thru the thread because I've had BK most recently for several months. I'm actually a heart recipient. I guess I like to be special. I'm 11 years out and went into rejection a couple of years ago. They pumped me full of meds at the time and then I've been on (4) anti-rejection meds since then. CellCept, Tacrolimus, Sirolimus and Prednisone. This then caused me to end up with CMV and BK for a year. The CMV went away and the BK #s went down but not away. I wasn't symptomatic so they left it alone. Well now I'm symptomatic again and asked to be tested at my annual in early November (after first being tested for UTI's in June, then going to my local urologist, then finally deciding to wait it out for my annual at Mayo). My urine is at the 100,000,000 amount and my blood reads 123,000. I'm wondering when people mention the blood if it's actually counted differently? Like maybe my 123,000 is only 12.3? These numbering systems can be confusing at times. It just says IU/ml. I have an appt with a urologist locally to then hopefully get another cystocopy so I can get a stain (infectious disease would like this). They've already lowered my CellCept but there is concern about lowering anymore due to risk of rejection. I've been off Tacro in the past due to the neuropathy side effects and ended up in rejection. I also took Zortress instead of CellCept for several years because I have cardiac vasculpathy but they wanted to switch me back. I'd like to know, has anyone had the bladder irrigation? At this point, it sounds so lovely. I know mine is so irritated and raw. I can feel it. I've brought it up before. I know it would be painful but in mind it would be soothing. Probably like the alcohol wipes cleaning your skin when changing the port bandages. Oh, and my kidney function went down due to the meds. My eGFR last fall was 21 but now it's in the mid-30's. Working really hard at no starches, sugars, etc. My docs have told me it's mostly med related though. Their scientific word was "walloped" me with the meds. But i'm still here.

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Replies to "Hi, I'm new here but read thru the thread because I've had BK most recently for..."

Hi @lmcarmichael, great to welcome another heart transplant recipient. I'd also like to introduce you to @danab @scottij @estrada53 and other fellow transplant recipients.

It does sound like you've been "walloped" by meds. (Great medical term, by the way 🙂 )
Bladder irrigation that flushes the bladder with sterile liquid is a medical procedure generally used to prevent or remove blood clots after surgery in the urinary system. Are you investigating bladder irrigation because you are concerned about blood clots? Have medications been reduced to help improve the eGRF?