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.

Results of 18 month visit to Minneapolis

Here are the lab results from my 18 month visit to Minneapolis.  They look good.

Cholesterol is 167
HDL is 83, which is higher than the last time.


The chemistry tests all are normal, except total protein which is  6.6.  (normal is 6.8-8.8)


For the CBC
WBC is 2.8  Absolute neutrophils is 2.1
Hemoglobin and hematocrit a little low.
I didn't realize that the vitamins I was taking had no extra iron.  I bought new ones.  That should help get these back to normal.


Prograf was 3.4 which was low.  I increased my dose from 4 to 5 pills twice a day.
Cellcept was 1.45 which is a little low, but not increased until the CMV business is resolved.

A1c is 5.4  which is excellent. (Normal is 4-6.)


Before breakfast:                 blood sugar is 91          C-peptide is 1.01


After breakfast (90 min.)     blood sugar is 168        C-peptide is 6.65


The JDRF e-newsletter with my story came out a few weeks ago.  It was pretty exciting to see.  Part 2 that contains the story since I had the transplant comes out later this month.

The CMV situation is ongoing.  I am still waiting for more results.
I developed a cold and sore throat last week, but it seems better now.  I had a CBC and EBV test to try to see what was causing this.  My white count was a little higher, but no EBV.  I am still getting tired off and on, but assume that is still the CMV.

Here are some pictures I took on my traditional walk along the Mississippi River.  It was cold, but very enjoyable.

I have CMV

My blood tests came back negative for EBV, so the Dr. decided to test for CMV. It turns out that that is what my problem has been. CMV is cytomegalavirus and most people have been exposed to it, but it only causes problems in infants and immunosuppressed patients. Its symptoms are like mono with the low grade fever and fatigue. It was both a shock and a relief to learn. It is pretty rare, but can cause some problems. I had to be seen by an infection control doctor. I am now taking valcyte which is an antiviral medication. The doctor said that it should not take long to feel better if this is what is causing my fever. He wasn't completely sure about this. When I told him that I had just taken a vacation snorkeling in the Virgin Islands, he said that he would be looking into this to see if he could find any other likely disease I might have contracted. I am rooting for the CMV.

In between the negative EBV and the positive CMV tests, I went to see my general doctor. She ordered a few tests that came back negative. I also just saw my opthamologist today. He found and irregularity on my retina called a coton wool spot. When I told him about the CMV, he said it makes sense and that now I should see a retina specialist. He said that the antiviral should clear it up, but that it should be followed up.

Things can sure get complicated. I really think I will be better soon. I have been on the medicine for 4 days now, and I can feel my energy coming back and the fever is getting better.

Gary and I leave in the morning for Minneapolis for my one year check up. I have been looking forward to it for a long time. It is too bad all of this other stuff is happening now, but I am planning on addressing each issue with Dr Hering and then putting it all aside and celebrating that I have reached my one year anniversary as an insulin free diabetic. One year ago, I never would have dared hope for such a thing.