Transplant: BK Virus

@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.

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

Hi @cmael 😊
Do you remember the approximate BK quant viral load number when you were first diagnosed with BK at your 2 year anniversary visit?
Thank you!

@hello1234, the number of quantification copies was 1110 in May 2020.

Thank you @cmael 😊 That is my approximate number too! Did the BK viral load number ever go higher than the 1100 or is that the highest number you had during the year it took to resolve? (I want to prepare myself emotionally for what's to come). Also, when they reduced your Cellcept did they add prednisone or any other meds or did you just stay on the same level of Tacronlimis and reduced Cellcept?
Thank you so much @cmael for all your awesome information. You (and your details) are very comforting!

@hello1234 Yes, my numbers went higher, but I’m not able to access my labs right now to find out the number. . I’ve been on Prednisone since day 1. I started out a higher amount post surgery and that was slowly reduced to 5 mgs a day. I’m still taking that amount. When I asked my practitioner if I’d always be taking Prednisone, she said yes.

Thank you @cmael 😊 for letting me know that the BK number can go higher during this journey. (If you find the highest BK number, please send me a message anytime). I wonder if your original cause of kidney failure is the reason you always need to be on Prednisone. That way, the same disease process won't happen to your beautiful new kidney. Is that possibly the answer? I was on prednisone for the first 30 days after transplant with a rapid taper. I heard if they bring down my Cellcept (or hold it) or bring down my Tacronlimis to help fight the BK virus, they may add Prednisone to my drug list to prevent rejection. I had a brief conversation with my coordinator on the phone, so I am not sure what the doctor is going to suggest as my new "cocktail". I have an appointment next Thursday to discuss my BK plan of action.
Thank you again for being so supportive of me. I want you to know how much I truly appreciate your kindness.

@hello1234 My original cause of kidney disease is chronic pylonephritis. I believe that I’m taking Prednisone because I showed signs of rejection early on.

Got it... that makes sense. Thank you again for all the support @cmael 😊 I appreciate you.

Hi @cmael 😊
I had my Mayo visit on Friday regarding my BK virus and my Cellcept was reduced just like you! My Tacronlimis is staying the same (target blood between 6 and 8). I know you said that your Tacronlimis was also kept the same. Do you remember your Tacronlimis target blood range during BK? Also, did you have a kidney biopsy anytime after your BK virus to check for damage, rejection, etc? Did any of your lab numbers show damage to your kidney at anytime?
I am hopeful for a successful result. My urine test showed over 100 million for my BK. Sounds scary to me.
Thank you so much for being my "BK" buddy that I can rely on for the scoop. Nothing replaces talking to someone that has actually gone through the process!