Transplant: BK Virus

@somedaydialysisfree 😊
You came into my life at just the right time. I was in need of your wise advice regarding peace of mind. The stress of the transplant process, CMV, BK, my mother's kidney failure, and yesterday I had two root canals so I am now on amoxicillin three times a day and in mouth/jaw pain, etc. Stress.
Thank you for being so generous and offering your comforting advice. I will take it to heart. Please keep me posted on your next lab results. How often do you test for BK and did you ever have any symptoms or was it just found on a routine test like mine?

@somedaydialysisfree
I just realized that you are back on dialysis and still taking immune suppression. Do you need to take immune suppression if you are back on the transplant list?

My understanding is that I haven't fully rejected it hence keeping me on the immunosuppression. I test every 4wks. They found it routinely, urine 1m post transplant & 3m in bood. I had no symptoms until I failed. Yes, stress isnt good. Keep looking in the mirror saying positive things,: you love yourself(it starts w/u), I will clear the virus, I am grateful for...) every negative thought needs to be replaced w/a positive one ;). Sit or lay in silence and just breathe daily. You can utube meditation, there is guided & just music ones if you want to try it. I saw a counselor for 6m too. I even wrote on my mirror & kept it on there for a year. Keep going, everything is for a reason 😉

@somedaydialysisfree ❤
I can tell from your caring posts that you are a very special person. I am grateful that you jumped into this discussion! Please post your new BK numbers when you have them. Also please post whenever to let me know how you are doing... and what you are doing to stay peaceful. THANK YOU for sharing all your excellent experience and tips!

Your very welcome! Wish I had this message board 2yrs ago 😊

@somedaydialysisfree, I want to add my welcome and wish you a good rainy morning from central Kentucky! I admire your positive approach and I must add a thank you for sharing your experience of How You Do It each and every day!

So, you already received your kidney transplant, and then BK damaged your kidney enough to put you back on dialysis. I have a kidney and liver transplant and have not met many individuals who have shared an experience about returning to dialysis. I invite you to scroll through the transplant topics and join in the conversation anywhere at any time. Let me know if you want help locating a topic.
I'm glad that you have already connected with @hello123.

Have your doctors said whether or when you might get off dialysis? Are you monitored by your transplant team?

Thank you!! I am monitored by both the transplant team and my home local neph. We prayed once virus cleared I would gain some function back to get off but it has stayed a very long time & my gfr tanked further in July for some reason w/out popping back up any. We believe in miracles💫, the other option is another transplant.

@somedaydialysisfree,
I also believe in miracles. You can count on my prayers.
Rosemary

Has anyone lost their transplant due to BK and did anyone get a 2nd transplant & did BK return? Or did you clear it & did it come back in your 1st transplant?

Hi @somedaydialysisfree 😊
It's great to hear from you! I am like you. I am still working on clearing my BK virus for the first time.
I am down to 4 million in the urine and 22 in the blood. I have been on reduced immune suppression for 6 months. I started at > 100 million (HIGH) in the urine so my latest 4 million is definitely better. What are your most recent BK test results now?
In my reading, I see that it's not a problem to get a 2nd transplant after BK virus is cleared. So that's good news.
I am hopeful that someone will jump in to this discussion and let us know if anyone had their BK virus return after being resolved? and if anyone had a 2nd transplant due to an infection.
I know that @caretakermom hubby had a challenge with CMV virus returning until they successfully revised the immune suppression meds. @caretakermom Is hubby doing well and staying infection free on the new meds?
@cmael and @leahd did you both remain BK free after finally clearing it?
Anyone else have a challenge with recurring infection?
Thanks everyone!