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

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.