Back to Rapamune

The decision has been made to switch me from Cellcept to Rapamune.  This is one of the immunosuppressive drugs that I was on before, right after the transplant.  I had very good luck with it before and should this time too.

I started taking the Rapamune yesterday morning.  I have felt pretty tired the last few days, but that could be partly due to the CMV.  My titer is back to normal now, but I remember from my first experience with it that the fatigue lasts for awhile.  I also remember being tired right after the transplant.  That could have been caused by any of the several drugs I was taking at that stage, but maybe the Rapamune was a part of it.  Time will tell.

The transition will start with my taking 5mg of Rapamune in the morning.  I will decrease the Cellcept after 4 days and then have my levels drawn to decide how to proceed.  The last transition from Raptiva/Rapamune to Cellcept/Prograf went smoothly, so I expect this will too.  It is almost a year ago now.

This is the newest member of the household.  Her name is Callie and she arrived with my daughter Becky.  She is almost housebroken now and has become the companion of our dog Lucky.  She has won us all over now and not entirely because of her extraordinary cuteness.  She and Lucky have been taking good care of me during this stage of the process.

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.