Transplant: BK Virus

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.

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?

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.

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.

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.

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.

Pain .. I try my best to follow " Mind over body" a theme that I was exposed to when studying / following classical Yoga of the mind. ( very hard to implement but that approach has helped me some times...sometimes I felt during my grad school/working years difficult to implement... now I am retired & over the years it is more feasible now than ever before........well this is purely subjective.

Hi All, It's now mid April 2024 and I'm starting to feel better on the BK Bladder/Urine front. In all honesty I can't remember how long it's been since I first reported symptoms to my GP, then transplant and infectious disease (I'm sure many of you know that time can start to be a blur with various symptoms). Anyways, I ended up going completely off the mycophenolate and am now just on 3 anti-rejection meds (tacrolimus, sirolimus and prednisone). I think that's all my body can tolerate even with the rejection situation. I thought I'd share for the other's out there that may look at this thread someday with BK and know that it will go away with reducing anti-rejection med's but it's a very very slow process. They started with me some time last summer. It's been about 9 months now. I chalk it up to transplant life.

Hi All, It's now mid April 2024 and I'm starting to feel better on the BK Bladder/Urine front. In all honesty I can't remember how long it's been since I first reported symptoms to my GP, then transplant and infectious disease (I'm sure many of you know that time can start to be a blur with various symptoms). Anyways, I ended up going completely off the mycophenolate and am now just on 3 anti-rejection meds (tacrolimus, sirolimus and prednisone). I think that's all my body can tolerate even with the rejection situation. I thought I'd share for the other's out there that may look at this thread someday with BK and know that it will go away with reducing anti-rejection med's but it's a very very slow process. They started with me some time last summer. It's been about 9 months now. I chalk it up to transplant life.