Transplant: BK Virus

Posted by hello1234 @hello1234, Aug 12 6:49pm

Hi all,
It's Friday night at 7:45pm and I just received an email notification from my local lab that my BK virus test came back positive. I am a two year post kidney transplant patient. Does anyone have any experience with BK virus? I had the CMV virus eight months after my transplant which is now resolved. But I am not familiar with BK and how it is treated, etc?
Thanks everyone!

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

@hello1234
Friday afternoon results are the worst! Especially via a portal message. Although I have no insight on your results, I can relate as I received both my initial (mild) rejection call on a Friday afternoon and then had a bunch of questions pop into my head after business hours.
Good luck with your test results and getting answers.
Jackie

REPLY

Thank you @jackiez 😊 I knew you would relate to my Friday night test results timing. I decided to do the exact same thing you did….jump on Mayo Connect and reach out to my transplant buddies for assistance. I am hoping someone has some experience with the BK virus.
Thank you Jackie for reaching out and Happy Saturday!

REPLY

@hello1234
So sorry to hear this. I understand that said virus is common in kidney transplant
recipients and should be addressed quickly. Have you contacted your after hours team at Mayo. My hope as it is common, your team will know what to do with it.
Best always,
s!
Scott Jensen

REPLY
@scottij

@hello1234
So sorry to hear this. I understand that said virus is common in kidney transplant
recipients and should be addressed quickly. Have you contacted your after hours team at Mayo. My hope as it is common, your team will know what to do with it.
Best always,
s!
Scott Jensen

Jump to this post

Hi @scottij 😊
Thanks so much for jumping in! Excellent suggestion to call the Mayo 24/7 line. I contacted them last night and they were wonderful to me. The nurse practitioner told me to have the BK results faxed to my coordinator on Monday morning. She told me that there was no emergency and a discussion on Monday will be fine. She told me to relax and enjoy my weekend. She was very comforting. In the meantime, I am hopeful that someone on Mayo Connect has had some experience with the BK virus and may be able to give me a little heads up on the treatment, any symptoms, how long it takes to resolve, etc. I am hopeful, like you, that because BK virus is common with kidney transplants maybe there is an established protocol that resolves it. Thank you again Scott!

REPLY

Hello, @hello1234
Apart from testing & detecting the increase in BKV viral copies showing up, was there:
– Any impact on GFR / any other symptoms or observations on the results (WBC count etc)
Thanks & Wishing you quick & successful treatment .
Please keep us posted

REPLY

Hi @l0lag0lag0b3 😊
Happy Saturday to you! So far, the only test results that appear elevated to me is my WBC. It's a little higher than I normally run. I will need to discuss this on Monday too.
Thank you so much for your kind wishes and I will definitely keep my Mayo Connect family posted!

REPLY

Yes, my labs showed the BK virus at my 2 year checkup. My Cellcept was cut from 750mgs twice a day to 500 mgs twice a day. It took several months for it to go down. I was told that it would be slow.

REPLY

Hi @cmael 😊
Thank you so much for posting!! May I pick your brain a little for some details……Did you have any symptoms from the BK? and were you taking reduced Tacronlimis along with your reduced Cellcept? Do you test negative now and are all your numbers back to normal with no lasting problems?
Thank you so much for helping me to understand this BK virus. I went through two months of CMV, but I am unfamiliar with what BK is like. I really appreciate you sharing your story with me and I am very thankful that you responded!!

REPLY

hello1234, I did not have any symptoms from the BK virus so it was a surprise to me. Only my Cellcept was cut back. My tacrolimus stayed the same. My last BK test came back negative. As my numbers were coming down, it wasn’t a straight path. It seemed to go down, then up a little and back down more. It took most of a year to come down.

REPLY

Thank you so much @cmael for sharing your successful BK story with me! It's very comforting to know that you had no symptoms or lasting negative effects from the BK virus. And most importantly, that you are now testing negative! I am very happy also that you warned me about the time it can take to resolve and that it's not a straight path down. With that in mind, I won't be over concerned and worried about a few "bumps" of higher viral load when I see it on the test result. How often do you now test for BK?

REPLY

@hello1234, I was tested at my last Mayo annual checkup. Now my labs are being done every 3 months and there is no order for rechecking the BK virus. I hope that you’ll have an uneventful success with eliminating it, too.

REPLY

Thank you so much for all the excellent information @cmael
I can't thank you enough for sharing your experience. You have been extremely comforting to me. There is nothing that can replace hearing from another transplant patient the details on what to expect. I appreciate very much that you jumped in to help me. ❤

Thank you to all my Mayo Connect family for all your kind responses. Love you guys! @jackiez @scottij
@l0lag0lag0b3 @rosemary

REPLY
Please sign in or register to post a reply.
  Request Appointment