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BK virus update and results

Posted Jul 23 2009 10:21pm

I received a call from the Transplant Nurse on my way in to work today.  She called to give me the results of my blood work from Monday regarding the BK virus.

On the surface, the results don’t look good-I have BK virus in my blood. However, I expected that, being that there was over 39 MILLION copies of BK in my urine.

But it was actually good news: there are only 7600 copies of the virus in my blood, and the only treatment is that which I’m already doing-stopping the CellCept.  No need to treat with Cipro or Leflunomide; they are just going to monitor my blood monthly for the number of copies of the virus, and once my blood is clear, they will monitor my urine.  When the urine is clear of the virus, I’ll go back on CellCept.

When they didn’t screen for this, BK killed off a lot of transplanted kidneys.  I’m very fortunate to have been screened, as this will prolong the life of my “new” kidney.

Of course, the week wouldn’t be complete without ANOTHER problem popping up; this time, unrelated to my kidney.

On Tuesday morning, I was awakened at 4:30 out of a sound sleep with pain in my lower leg near my ankle. I’ve had a similar pain in the opposite ankle before, and given the problems I have with the Charcot Marie Tooth disease, I passed it off to a musculo-skeletal pain, assuming it was probably tendonitis (I’m a nurse, not a doctor).  I went to work, and the pain increased. When I took off my orthotic (splint) and sock, the area of pain was BURNING like mad, and was red.  At that point, I thought it might be the start of Shingles, given the quality of the pain, the redness, and the fact that I’m immunocompromised.

Working in the same clinic as my primary doctor has it’s advantages (which I do not abuse), and I got an appointment right away. My self-diagnosis was wrong, and it turns out I have phlebitis (an inflammation of the vein). My theory is that the strap on my orthotic was too tight, along with the fact that I do some intense walking over lunchtime, which caused the phlebitis.

It’s still flared up. When I stand or walk for over 10 minutes, the pain returns. In fact, standing in line 20 minutes today waiting for my picture license was a killer, but I elevated it once I got to work, and it was better.  It worsens then when I’m driving, since it’s putting strain on the vein.  Elevating it for about 30 minutes calms it down, so I’ve been limiting walking.

The problem with medication is that the traditional treatment, Naproxen or other NSAIDS, is a big no-no with having the transplant, as these drugs are notorious for damaging kidneys.  So I’ve gotten by with Tylenol Arthritis (great drug; even better than Extra Strength Tylenol), and an occasional Percocet (3 in the past 2 days).

I’ll be sure to post an update with my labs in a few weeks, and will probably have a kidney-related post as well.

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