BK virus and post kidney transplant patient

@ramdem11 welcome to Mayo Clinic Connect. Congratulations on your kidney transplant. I had a pancreas transplant nearly 20 years ago. There were so many post transplant labs at first to watch for any signs of rejection &/or complications. During the first few months post transplant I developed an infection. It was so long ago now I don’t remember what exactly it was. I do remember having a PIC line installed so that vancomycin (sp?) could be administered at home. It took a second surgery (to relocate my transplant - long story) and about 6 more months to resolve. That was a long time ago and a different kind of transplant. What I want to convey is that there’s hope. Dr’s have more experience with kidney transplants. There are lots of ways to test for and treat viruses. Have you asked your provider if there might be a more effective medication to try? How are you tolerating the cidofir IV’s? Have you considered getting a second opinion?

Following with interest as just tested positive for BKV and as of yesterday my numbers increasing rapidly. Was under the impression that there is no treatment, just adjusting the tacro snd other meds.

The first step is to lower your immunosuppressant and if that doesn’t work, they will give you IV treatment, which usually goes away within 10 visits, but that’s not working for me, just keep an eye on your creatinine level and make sure that it stays within normal limits, My case seems to be very unusual as all of my blood numbers are within normal limits and my creatinine level is 0.9unfortunately this BK virus has been around for 50 years and there doesn’t seem to be any research of improvement in the treatment, Good luck in your future, we just both hit a little glitch and hopefully it will be resolved with no complications

Thank you for your response, I asked about the pic line and they are afraid of any infection That may occur, I am a patient of NYU, which is one of the top hospitals and doctors for kidney transplant, my blood numbers are all good within normal limits and my creatinine level is good so so that seems to baffle me, I trust my doctors. I just wish that there would be more research done on this BK virus since they are treating it as they did 50 years ago when it first came to their attention, keeping up hope and thanking God that I do have a second chance at life. Happy for you that your transplant is a success for many years and many more to come

@ramdem11 Let me add my welcome to Mayo Clinic Connect!
Within the Transplants support group, I found this discussion about kidney transplant and BK virus: https://connect.mayoclinic.org/discussion/transplant-bk-virus/?commentsorder=chronological#chv4-comment-stream-header

I hope this has some helpful information for you.
From the National Kidney Foundation, here is some information they present on the BK virus: https://www.kidney.org/kidney-topics/bk-virus-what-transplant-patients-need-to-know
Ginger

Am starting Leflunamide today
“To nip it in the bud” they say.
Was taken off myfortic and many others were adjusted in the last couple of days. So glad you started this helpful thread. Thx.