Home > Health > October 2010 BK Virus/Transplant Update

October 2010 BK Virus/Transplant Update

Busy end of summer, so I missed posting last month. I’ve had 2 straight months of negative BK in my blood, so next month, they will just  check the BK level in my urine.  I’m still on the Leflunomide; not sure how long I’ll be on that.

I had my quarterly appointment with the Transplant Surgeon and Transplant Nephrologist 2 weeks ago, and everything else is fine.

I did discuss the surgery to revise my dialysis fistula, and I decided to not go through with it yet, as it’s not causing any problems; it’s just huge, bumpy, and curvy-I can live with that.

My creatinine is holding stable at 1.1, and my blood counts are fine.  My urine protein and creatinine are still slightly elevated, but the Nephrologist wasn’t at all worried about it.  See the image below.

In other news, I’ve been walking without my AFO’s (ankle foot orthoses),and that’s been rough. I was stepping over something, came down on the forefoot, and my orthotic cracked.  I went to the Orthotist, and he temporarily fixed it, and fitted me for a new one.  The new orthotic won’t be ready until next week or the week after, and being that I’ll be on my feet a lot at work this weekend, I’m not wearing the AFO’s in case the fix doesn’t hold.  I can get by without them, but I’m likely to trip, and without them, my knees are starting to bother me as I don’t have the support of the AFO’s, and thus my knees are in a different position than when I wear them.

We live in a rural area, so we tend to put a lot of miles on our vehicles.  My wife only drives about 3 miles each way to work, but I drive 23 miles each way.  Thus, I tend to keep our vehicles until they die.  My 17 year old Chevy Astro (with 206k miles) finally went to it’s eternal rest, so we just bought a 2008 Chevy TrailBlazer with 18k miles on it.  It’s nice to once again ride in style.  In addition, it has 4 wheel drive, which will be useful when I have to go to work in the snow.

‘Til next month……

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  1. October 20, 2010 at 9:19 pm

    I didn’t realize that you were dealing with the BK virus this past summer, I had the same virus 6 mths post-tx, I could have shared my experience with you. I took leflunomide too. At one point I had some millions of copies, and it did scar my kidney some, but it did not affect my creatinine and as you can see, I was healthy enough to have a wonderful daughter.

    🙂

    Hope you are and continue to be doing well.

    • October 20, 2010 at 9:32 pm

      I remember reading about you having it on LiveJournal. I’ve actually had it for over a year. They initally watched it, then I did Cipro, and then started Leflunomide last Spring. I had over 39 million copies in my urine, but the amount in my blood never went above several thousand. They took me off CellCept when it happened, and I’ve been off it since (I’m only on Prograf now). Glad you’re creatinine is still good; we’re both very lucky that they now check for this.

  2. Gail
    November 14, 2010 at 2:28 pm

    I’m trying to find information about BK virus. I donated my kidney to my Mom in Jan. 2006. All has been well until this BK virus showed up last month. Her BK levels are outragious at 132,000. She has had to biopsies of her kidney and no rejection. She has done two rounds of IVIG infusions and they have taken her off Cell Cept. This is a very confusing virus…any words of advice, or maybe a website where we can find more information? The transplant center has been wonderful by the way, but I’d like to see more information.

    • November 14, 2010 at 8:01 pm

      There isn’t a whole lot of info available for laypeople on BK virus, and that which is available is usually several years old and/or in medical jargon that is difficult to interpret. I’ll try to explain it to you.

      BK virus is a Polyoma virus that initially causes a respiratory infection (we probably get it as children). When the acute phase of the infection is over, BKV goes dormant in the urinary tract. Those with normal immune systems have it dormant until they die, but when the immune system is suppressed (e.g. kidney transplant), it sometimes reactivates. Since it’s in the urinary tract, it may then damage the kidney. Not all transplantees have it reactivate. However, this may be the reason that kidney transplants only lasted a few years.

      In the past, when the creatinine in a kidney transplantee would go up, the doctors assumed that it was due to rejection, and gave massive steroid doses. While this could arrest rejection, it was the absolute worst thing to do if the rise was from BK virus. The immune system became even more suppressed, allowing the virus to go wild, and thus cause even more damage.

      Now, doctors (hopefully) know that before giving larges doses of steroids to treat increasing creatinine, they need to check for BK (my transplant center routinely screens for BK for the first 2 years after transplant).

      There is no definitive treatment to get rid of it. (since there is no treatment for ANY virus to actually get rid of the virus; antivirals only arrest the replication of the viruses). However, there are treatments to contain BK virus.

      First line treatment is to decrease the immunosuppressants. When I was found to have BK virus during a routine screening, they stopped my CellCept.

      Next, they use fluoroquinolone antibiotics (Cipro, Levaquin, etc). I took Cipro, and it helped temporarily, but the viral levels started increasing again afterwards.

      Third, which I’m currently on, is Leflunomide (commonly used in various arthritic conditions). I’ve been on it for about 5 months, and the last 2 months I had my Bk levels checked in my blood, there was no virus. I just had my urine checked, but haven’t gotten the results yet. The highest level I had in my blood was 8,000; the initial urine for BK was greater than 39 million copies.

      The last option for treatment is IV Cidofovir. The problem with this option is that the drug can damage the kidney, so they don’t use it until they’ve tried the others.

      Hope this helps. Let me know if you have any questions; if I don’t know the answer, I’ll try to find out for you.

      Jeff

  3. November 15, 2010 at 11:49 am

    Here’s well-wishes for you. I am searching about BK virus and I came upon your blog. I’ve learned so many things here. Thank you so much. If ever I have a question that has not been answered in this post, I will definitely come back to ask the question. Bookmarked your blog.

    • November 16, 2010 at 9:56 pm

      Well wishes to you too.

      I posted some (hopefully) useful info on BK for another reader here. You might find it useful.

      Feel free to ask anything; if I don’t know the answer, I’ll do my best to find it out.

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