I Hate Dialysis Message Board

Dialysis Discussion => Advocacy => Topic started by: cmazure on March 15, 2009, 01:05:26 PM

Title: research for BK Polyoma Virus cure
Post by: cmazure on March 15, 2009, 01:05:26 PM
My kidney transplant failed due to the BK Polyoma Virus. The infusions did not work, the Arava caused serious lung problems. Unfortunately, this topic is not very well known. At the moment, unless other avenues are exploreed, I and many others will be forced to be on dialysis for life. I would love to hear from anyone who has this virus. The more people we can acknowlege having this problem, the better chance we have for our elected officials to support research.
Caren Mazure
Title: Re: research for BK Polyoma Virus cure
Post by: pelagia on March 15, 2009, 07:43:00 PM
I am very sorry to hear that you lost your transplant to BKV.  We have had some discussions about this virus recently.  See for example:

http://ihatedialysis.com/forum/index.php?topic=12395

you can find more posts by going to the home page and entering BKV or BK virus into the search

 :grouphug;

Title: Re: research for BK Polyoma Virus cure
Post by: kellyt on March 23, 2009, 07:31:48 PM
I'm so sorry to hear that.  Right after I transplanted in Nov. they informed me that I was CMV negative and I had to go through 7 sessions of IVIG.  I had my last treatment the first week of this month.  My hospital said they've never had a kidney transplanted patient return with the virus once they completed the IVIG treatments.  I hope they're right!

How did you get BKV?  Do you even know?  I'd like to hear more of your story.  When did you transplant?

Again, I'm so sorry you lost your transplant.  That must have been so devastating for you and your loved ones.    :cuddle;
Title: Re: research for BK Polyoma Virus cure
Post by: Zach on March 24, 2009, 06:52:49 AM

Right after I transplanted in Nov. they informed me that I was CMV negative and I had to go through 7 sessions of IVIG.


Do you mean that you were negative and your donor was positive?

 8)