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March 2010 BK Virus Update

March 29, 2010 Leave a comment

I had my monthly labs last week, and overall they were good.

My creatinine is still 1.2, my blood counts are stable (my hemoglobin will never be in the normal range due to my Thalassemia; it’s in the high 12 range), and my Prograf level is 8.2 (right at where the docs want it to be, although at the high end of normal)

The level of BK virus in my blood dropped a bit, from 800 copies to 500 copies. It’s obviously still a concern, as I’ve been off my CellCept since last Summer, and I still have BK virus in my blood and urine, but it’s a low level of virus.  I’ll discuss this with the Transplant Surgeon at my appt later this month, but I’m sure that if they were concerned, they would be more aggressive with this.

Despite the immunosuppression, I am able to stay free of most infections, despite working as a RN in Pediatrics.  It’s not the common infections that are worrisome though, such as colds and stomach viruses, but rather the opportunistic infections like fungal infections or unusual viral infections (such as BK virus).  But I don’t worry about those; whatever happens happens, and I just do my best to avoid the ones I can, and keep on keepin’ on.

The only remotely recurrent problem I have is with my sinuses, and even that isn’t too bad.  I take a nasal steroid daily, and that helps.  However, I end up on antibiotics once or twice a year.  I recently read a report that many sinus infections are of fungal origin, and not bacteria. Unfortunately, I can’t find the link to the article.  When I find the article,  I’ll post it to the comments below.

I have a new online friend (Nancy), who donated one of her kidneys to her father.  She’s a regular reader of my blog, and found me doing a search on BK virus.  Her father just had a kidney biopsy, and they found BK in his kidney.  He’s thankfully doing better; please send out your prayers and/or positive thoughts for him.

BK is becoming a hot topic in the Transplant Community, but not a lot is known about it.  I think we’ll be hearing more about it.  Knowledge is power, and we need to be aware of this issue to be better informed, so that if/when it happens, we can deal with it better.

My foot continues to be a small problem (pain every day), but I’m now able to go for my daily walk.  I feel better doing so, and the benefits of walking outweigh the daily pain.  I still have a small superficial pressure ulcer, but it’s not worsening.  I just have to monitor it, and if it worsens, I’ll be back to the Podiatrist.  Just a speed bump along the way….

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February Labs

March 9, 2010 2 comments
I had labs 2 weeks ago, but am just now getting around to doing a blog entry.
My kidney labs are fine; Creatinine 1.2, BUN 23, and GFR >60.  My blood counts are normal (for me, that is; I have Thallasemia Minor, a form of anemia)-my Hemoglobin is 12.9.   My Prograf level is 8.6, which is within the range they want.
As for the BK virus labs, they are puzzling.  BK is still detectable in my urine (as expected), and it’s once again detectable in my blood (last month it wasn’t).  The puzzle is that the number of viral copies in my urine decreased from 226k last month to 196k this month, yet it went from no copies last month in the blood to 800 copies this month.  BK usually appears first in the urine and then the blood. I don’t know why it decreased in the urine yet increased in the blood. Not a big deal; I’ll just have to wait to see what it does next month.
My CellCept is still on hold due to the BK, but the plan is to resume it once the BK is once again dormant.
I’ve been having problems over the winter with pressure ulcers on my foot.  For those not familiar, I have a hereditary neuropathy which causes degeneration of the nerves in the arms and legs, leading to muscle shrinkage.  I wear orthotics that give my legs support and allow me to walk normally without holding on to anything.  When you see me walk, you would probably not be able to notice this, unless I’m not wearing them.   I don’t let it stop me, nor do I think about it.  It is what it is, and life goes on.
I had a fracture on the outside of my left foot years ago, and the bone healed with a bone callous protruding out the side (it looks like a bump); I have a thick skin callous in the area that rubs against the orthotic, and in December, I developed a pressure ulcer there. I’ve been going to the podiatrist every 2-3 weeks, and had a visit last Friday.  After multiple visits to shave the skin callous, and 2 visits to the Orthotic tech and Orthotist, I have my Orthotics adjusted to a comfortable configuration, and I don’t have to go back to the Podiatrist until needed in the future.
Now that my Orthotics are fixed, I have started walking at lunch time. I’m hoping to get the “winter pounds” off, and get back into better shape.

My sister is doing better, but has been through a lot.  She is coming up on her 1st anniversary of getting her kidney (April 30), but has had problems afterwards.  Her kidney is working well, but she’s had diarrhea to the point of becoming malnourished.  After the “million dollar workup”, she was found to have gall stones and sludge in her bile duct.  They did an ERCP (a scope inserted down past the stomach and into the bile duct of the gall bladder), and removed the stones and sucked out the “sludge”.  Unfortunately, it didn’t help her appetite, and she worsened.  She ended up in the hospital last week for 3 days with dehydration, they changed her meds around, and she now feels betterher appetite is picking up.  They probably will eventually take the gall bladder out, but with her nutritional status, it’s too dangerous now, as she wouldn’t heal properly.

For those who post comments, keep them coming. I’m also a little late approving them, but I did just approve those that were pending.