Thursday, February 18, 2010

CMV update

It has been an interesting few weeks.  I have been waiting to write about it until some kind of logical break in the action, but that might be awhile.

I had the lovely colonoscopy which wasn't really all that bad a week ago friday.  It was to determine if I had CMV colitis.  The initial finding was that I do have colitis.  The tissue was sent to Mayo Clinic to do the testing for CMV.  I really thought it would be positive.  It seemed logical that if I have CMV and colitis that they would be linked.  It was decided that they are not.  The cause of the colitis is one of my immunosuppressants, the Cellcept.

So, now the question is whether to change to a new immunosuppressant or to reduce the Cellcept dosage.  The decision is being discussed now by Dr. Bellin and Dr. Hering.  That would be an interesting discussion.  From my perspective, it would be nice to have my stomach back to normal, but my glucose numbers are so good right now.  I hate to risk that the islet cells wouldn't be as compatible with the new drug.  But, I am sure that there are numerous other variables that I am not aware of.  I feel comfortable with whatever these two doctors decide is best for me and the islets.

As for the CMV, it is still lurking, but getting better.  I don't feel as tired anymore.  If I have a busy day, I get very tired, but if I take it easy, I'm OK.  I had my CMV level drawn on Monday and am awaiting the results.  I saw the infection control doctor on Tuesday.  He was not surprised that it was the Cellcept, not CMV, causing the colitis.  He is not convinced that the CMV is causing any problems with me at all.  I'm not sure.  I guess either or both the Cellcept and the CMV could cause the tiredness and weight loss.

This is all complicated but so interesting.  In a strange way, I find that I can be very objective about all of these bumps in the road.  I think its a matter of trusting my caretakers, finding it all so scientifically interesting, and enjoying the relief of not being in the drivers seat of my treatment.  It is all part of being in a clinical trial.  It is not like a trip to the doctor.  There are the obvious risks, but the benefits are very rewarding.

Some of the best benefits are the people I come in contact with.  Check out my blog list.  Also the Northwest Ohio JDRF newsletter came out this week with the 2nd part of my story.  Very exciting.

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