BK Virus

[bisley]

Greetings everyone,

I am two and a half years post transplant. Back in May of this year my blood work showed that I was positive for the BK Virus. My nephrologist changes some of my immuno drugs and the viral load started coming down. Unfortunately, the virus also showed up in my urine. My urologist was very concerned as the viral load was extremely high. Consequently, I started on a course of cidifovir via bladder instillations. Every thing started improving. The viral load in my blood improved significantly and the viral load in my urine dropped to an undetectable level. A couple of months later the viral load in my urine jump from non-detectable to over seven million. My nephrologist order a kidney biopsy which did not show a significant amount of the BK virus, however, my kidney function has dropped down to less than 25%. One of the side effects of the BK virus is the loss of the transplanted kidney, although my nephrologist tells me its not time to panic. Transplant patients are at a high risk of activating the BK virus. Most people have this virus but it is dormant. Those of us on high doses of immunosuppressive can cause this virus to wake up. Unfortunately, there is no magic pill for dealing with this virus nor is there any significant amount of studies or trials dealing with this. From the information that have been able to find there is a high chance of losing the kidney.

Has anyone here lost their transplanted kidney due to the BK virus and if so how long did it take to get another kidney?

Regards,

Joe

[Winner76]

Hi, I’m 3 and half years post transplant and got BK very early on within a few months . I was taken of one immune suppressant for good. I’m on prograf and steroid only. So the levels dropped dramatically and have stayed very low since. But it’s always there . My kidney is doing fine and hopefully it stays that way. Try not to worry if the levels stay low I think you’re kidney will be ok.

Best wishes

Tina

[bisley in reply to Winner76]

Thanks for the reply. I'm going to be 73 very soon and at this stage of my life I don't think I can handle dialysis again. I'm pretty sure that at my age I will need a living donor for another transplant. My nephrologist has changed some of my immunosupprisants however, I'm going to ask him about possibly dropping one of them.

I wish you all the best.

Joe

[Winner76 in reply to bisley]

Hi Joe,

No you don’t want to be back on dialysis but the kidney team should have an idea if it gets close to that situation. If you have a living donor I would say start the process now because it can take up to two years to get them tested for everything and to be ready. Well it does here in Ireland. The doctors dropped celcept when my BK was high and I never went back on it. I take 5mg steroid daily and 1mg of prograf twice daily.

I hope you get it sorted so you can stop worrying.

Best wishes

Tina