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Author Topic: research for BK Polyoma Virus cure  (Read 7029 times)
cmazure
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« 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
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pelagia
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« Reply #1 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;

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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
kellyt
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« Reply #2 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;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Zach
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"Still crazy after all these years."

« Reply #3 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)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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