Home > BK Virus, Health, Transplant > BK Virus/Transplant update October 2011

BK Virus/Transplant update October 2011

It’s been a busy end of the summer, and I haven’t posted in a while, so here goes.

Everything is going well-uneventful is good.

My BK virus levels have been variable, but overall are low.  The latest is 9200 copies in my urine.  The previous had been 25,700 (August 31), 36,600 (August 3), 80,300 (July 5), and 1100 (May 31).  My last Prograf (Tacrolimus) was 7.5, and creatinine 1.1.  My Acute Renal Failure from May has totally resolved, and hopefully did minimal damage to my kidney.  I’m over 3 years out from my transplant (May 3, 2008) and have yet to have had a biopsy.

I had my quarterly follow up in Transplant clinic at the end of August, and now only have to have labs for blood work every other month; they still check a BK Urine monthly, as they want to keep close tabs on that.  Another plus is that my transplant follow ups will be every 4 months rather than every 3.

My BP is trending slightly higher (I haven’t had any BP meds since I was on dialysis over 3 years ago).  I attribute most of that to stress, as I’ve started a new job in January, and it’s very intense.  Now that my foot is better, I will be able to start exercising (walking), so that should help.  I had my yearly exam with my PCP today, and my weight is 8 lbs less than this time last year, so I’m on the right track with that.

I had an appointment with the Vascular Surgeon back in July, and he recommends that I have my fistula tied off.  Not sure when I’ll do that, but probably will have it done in the upcoming months.  It’s a simple procedure, and the anesthesia will be conscious sedation (no general anesthesia unless they run into a problem).

I’m thrilled with my new Transplant Coordinator (similar to a Case Manager). She is your typical anal retentive RN, and does an excellent job. I have complete faith in her judgement, and she is able to answer my questions (my previous TC oftentimes either didn’t have a clue, or didn’t bother to find out the answers to the questions I had).

I’m thrilled with the repair on my left foot.  I saw an x-ray after the surgery, and have a bunch of hardware, including a 3-4 inch threaded bolt going straight up into my heel, as well as some plates and screws below my 1st and 2nd toes at the metatarsals (foot bones).  With my neuropathy, I have “hammer toes”; these were corrected on the first 2 toes, and they are now straight.  I no longer have to wear an AFO; I just have a solid plastic insert that I wear in my shoe.

I continue to receive messages from people with PKD and/or BK virus, and am happy to answer any questions posted for me.

As for my (fairly new) job, I love it!  I’m a RN Case Manager for a large health insurer dealing in disease management.  In addition to my knowledge base, I’ve also been able to put my personal health experience to good use.  I’m very open with my personal health issues, and this has helped immensely in several ways: understanding what my patients with chronic medical problems are going through, assessing potential problems with their meds and kidney status, and making suggestions that are helpful.  Case Management is a burgeoning field, and I plan on working on Case Management certification over the next 2 years, and possibly going on for a Master’s Degree in Case Management.  I’m 48 years old, and will probably be working another 20 years or more, so it’s not too late in my career to do this.

For those who are interested, I’m now on Twitter.  My posts are for the most part links to articles related to medical studies and discoveries related to renal, transplant, heart failure, respiratory, osteoporosis, and others.  I’m still working on figuring out Twitter, but hope to be posting more as time goes on.

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  1. Barb
    October 14, 2011 at 9:13 am

    Good to hear you are doing well!

  2. mike
    April 16, 2013 at 1:18 pm

    Hi
    I had a surveillance biposy at 13 months (jan)post transplant that showed bk virus but my creatinine was 1.07. I had steroids in ca se it was rejection (they cannot tell so early) and I started a reduction in meds. My creatinine went to 1.13 and this month 1.12, so my creatinine looks fine. I’m concerned with the bk though. It was 100 at 13 mos, 500 since, my doc says its not an active virus and that they’ll keep testing. Any advice/thoughts?

    • April 16, 2013 at 6:37 pm

      Hi Mike,
      With those levels (presumably urine?), I would have to agree with your doc, based on my experience. Not sure when you had the steroids, but that could have increased your level of BK; if these numbers are AFTER the steroids, nothing to worry about. Even if they were before, there still probably isn’t anything to worry about, as your immunosuppression has been reduced.

      My first urine BK had >39 MILLION copies and none in the blood. That’s an extremely high level. but reducing and then stopping the CellCept brought them down to the several thousand range. I had a few positive serum BK’s along the way, but usually, I’m negative for serum BK and have 500-3,000 in my urine. Occasionally, I’ll have a high urine BK (like last month-906,000), but it usually goes back down the next month. I’m waiting for this month’s results, which I should have tomorrow or Thursday, and expect that it will be a few thousand. My creatinine is rock stable at 1.2, I’ve never had a biopsy, and my Tacrolimus is at 8.1 (goal 7-9). Hope this helps.

      Jeff

      • mike
        April 16, 2013 at 6:41 pm

        thank you so much for your response. My levels are checked by blood never by urine. my results from today was under 500 in my blood, which they said was not an active infection. I just wish itd go away but they are not worried,and I have been back on full immunsuppression by the way, and my level is still below 500, thoughts?

      • April 16, 2013 at 7:51 pm

        Yes, below 500 is not anything to worry about. I suspect that the persistence of my BK is not the norm. I don’t think you have anythingtoworry about, keep me posted and good luck!

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