Drug transition update

I am slowly decreasing my dosage of Cellcept.  I am down to less than half of what I had been taking.  I am up to full strength now of the Rapamune.  I feel better already.  I still get tired sometimes after my walk, but not without a reason anymore.  I no longer wake up and already feel tired.  My stomach is getting better too.  I still have a way to go with that, and I still don't have much of an appetite, but I am trying really hard to push myself to eat.
My blood sugars continue to be good.

That was a few days ago.  I have decreased my Cellcept even more and am even better.  I have been testing my endurance lately, and can go a lot farther than a few weeks ago.  It's just wonderful.


The bad news is that now I have the downside of Rapamune, which is mouth sores.  They are not nearly as bad as the stomach and fatigue issues of Cellcept, but are still no fun.  I had a few of them when I was on Rapamune the first time, but not this many.   I have 3 bad ones right now.  As much as I hated to complain already, I asked Janet what I should do about them.  She suggested a medication called Debactoral and Dr. Bellin agreed.  I had a dentist appt this morning and he is going to get some samples in for me to try out.  In the meantime, he prescribed an oral lidocaine rinse, which helps some.

These are just some fun pictures.  The first is a day's worth of pills.

The second is the first flowers of the year.

The last one was taken at work.  One of my very creative coworkers decorated my pig for St. Patrick's Day.

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.

CMV is back

My CMV (cytomegalovirus) is back.   A few weeks ago, I noticed that I was feeling a little tired.  I just couldn't get motivated to do things.  My blood sugars had been elevated about 15 units on average.  My diarrhea was a little worse.  I was beginning to wonder about the CMV.  Luckily, I was due to have it checked soon.  Ironically, I began to feel a little better and my blood sugars decreased back to normal.  I decided I was wrong about having CMV.  Then on Thursday evening, my infection control doctor called to say that my CMV titer was quite high. It's amazing how having a doctor tell you that you are sick can make you really feel sick.  The next day, I felt very tired.  Was it the power of suggestion, or was I in denial before?  Who knows?

The infection control doctor was expressing concern about me being on an antiviral again for a long term, but said he would discuss this with Dr. Bellin.  In the end, they decided to put me back on the Valcyte.  This is the antiviral that I was on immediately following the transplant and again for two months with the first CMV infection.  I have been taking it for 5 days now, and the tiredness seems to be gone.  My blood sugars are still good.  I never developed a fever.  Hopefully, we caught it on the downswing.  I might just have to contend with this for the long term.  It is not that I am catching it from someone, it is just a latent infection that my immune system would normally keep at bay.  But, being immunosuppressed allows the infection to gain control at times.  I feel comfortable with the decision to treat this with the antiviral.  I would not want to feel that tired all of the time.

Dr. Bellin was concerned that I might have CMV colitis because of my worsening diarrhea, so I have to have a colonoscopy to rule it out.  Lucky me.

I just returned from my 18 month visit to Minneapolis.  The timing was good in that I could discuss the CMV and the strategy for dealing with it with them.  The trip was enjoyable as always, and I feel very reassured and that I am in very good hands.  I will post the lab results when they are all available.  I actually had good luck with all of my flights.