BK Virus in Heart Recipient, going on 3 years or so

Posted by lmcarmichael @lmcarmichael, Feb 15 10:29pm

Hello All,
Like many, post transplant has been a bit of a roller-coaster ride. Some ups and downs, twists and turns but it's been a heck of a ride. At 8 years out I went into rejection. Then they walloped my immune system. As a result I ended up with CMV and BK. It took about a year to clear the CMV but the BK has only gotten worse. My #'s a couple of weeks ago were around 339,000. I don't even know what that's considered in the range of things but I know it should be zero. Anyways, it hurts. I've seen a couple of Urologist's, had cystcopy's, know my bladder is red and has ulcers. I pee all the time. With very little results. And my eGFR bounces between 20 and 30 (before the treatment for rejection i never had a problem with my kidneys). So, remember always take care of them!
I dont live close to Mayo so I visit for my heart transplant follow-up and when I have medical needs on that front. It is painful driving 6 hours each way right now with the constant urge to urinate.
Anyone else have BK with heart or other organs or mainly kidney? Where are you all treated for it? Im trying to get in to infectious disease locally but they may not accept me since I don't get treated by their transplant team. It's getting more difficult to just do daily life because the pain and discomfort. Just trying to figure out my next step in advocating for myself. Thanks.

Interested in more discussions like this? Go to the Transplants Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 28 10:57am

@lmcarmichael, there are a few discussions about BK and CMV in the group.

- Transplant: BK Virus https://connect.mayoclinic.org/discussion/transplant-bk-virus/

- BK Virus New Antibody https://connect.mayoclinic.org/discussion/bk-virus-new-antibody/

- CMV discussions: https://connect.mayoclinic.org/group/transplants/?search=CMV&index=discussions

I'm tagging members like @myringo @hello1234 @preetismiles @rosemarya @danab @estrada53 @anurag27 @leahdrose, who may have experienced BK or CMV who can share their experiences with managing infection and coordinating care between Mayo Clinic (or other transplant center) and local care.

@lmcarmichael, have you talked to your Mayo transplant team and their recommendations for coordinating care locally?

Rosemary, Volunteer Mentor | @rosemarya | Mar 3 9:00pm

Hi, @lmcarmichael. I can understand the difficulty of being at a distance from one's transplant center. I, too, am far from Mayo MN where I recieved my liver and kidney transplant. I've not experienced BK virus, but have had some other issues that required my local doctor(s) to contact my transplant team at Mayo to communicate about treatment. So far I have only needed to return to Mayo once outside of my annual evalustion appointment. I am fully aware that as I age, this will become more difficult to do. It sounds like you are currently in that kind of a situation. Thinking back to 16 years ago when I was discharged from Mayo outpatient care to return home (850 miles away) I remember being extremely concerned about being so far away. That is when my nurse coordinator, reassuringly told me that she and the transplant team were only a phone call away. I urge you to call your transplant team and explain your current circumstances. They have handled situatiions like yours before, and will have some ideas for your continuing treatment.

Who is directing the current treatment and monitoring your BK Virus ?