Day 91

After a scare of my rapamune level being too high, I have  learned that I need  to take it  after I have my blood drawn.  I assumed that since I take it every day, that there were no significant peaks or troughs.  I was wrong, but luckily the doctor figured out what I had done so that neither of us really panicked.

Still having good blood sugars.  I had a sore throat  on tuesday and thought that I had probably caught something from one of the many people I had hugged throughout the course of the funeral, but it went away by the next evening.  I was relieved.  I did get my flu shot done the previous week.  

I will be taking less of the other immunosuppressant, Raptiva, from now on.  Instead of taking 0.5 units, I will be taking 0.25.

I  am also done taking the Valcyte pills which are the antivirals.  Yay, 2 less pills.

Day 84

I have been on lipitor for about a week now.  I had a headache for a few days, but so far no other side effects.  My blood sugars continue to be good.  I think that they are still continuing to become steadily better.  

My rapamune level was lower so I am now alternating 3 and 4 pills daily to get back into the therapeutic range.

On a very sad note, Gary's Dad died on thursday.  He was a wonderful man, and we will miss him very much.

Day 77 in Minneapolis

I had my Day 75 visit at the clinic.  My mom and I drove to Minneapolis for this appointment which was scheduled over 2 days.

The first day, I had a test in which I was hooked up to two IVs, one in each arm.  One was to  deliver glucose and then insulin, and the other was to draw blood.  I was first given a large dose of glucose, so much that it actually made me feel flushed and light headed for a minute.  My blood was drawn every few minutes and the glucose level was measured. Then  at 20 minutes, I was given insulin (1.64 units) and my glucose was again checked every few minutes.  Then I was drawn every 10 minutes or so for about 2 more hours.  The goal was to see how the islet cells responded these two  events.  I haven't seen the actual data yet, but Dr. Bellin says it looks good.  The islets were able to handle the glucose and resist the insulin.

On the second day, I again went in fasting, and immediately had my blood drawn.  I was then given a calculated amount of a liquid (Boost) with a set amount of carbs.  I was drawn again after 90 minutes and my C-peptide was checked.

This was an important visit, because these  tests are designed to measure  how  effective the transplant is.  Because I am off of insulin, I feel certain that mine is considered a success, but it will be nice to see how the data reflects this.

We had a long rainy drive back home, but the trip was enjoyable.  My mom was able to connect with some of her old Minneapolis friends, and we had a nice dinner with one of her cousins on one of our nights there.

When I got home, I had an e-mail saying that the tests showed that my LDL was 127 which is high.  It was recommended that I start taking a statin to lower my cholesterol.  Since I really hated the thought of any more pills or  medication in general, I asked to speak with Dr. Bellin about it.  She says that changing my diet will help some, but that the  problem is probably being caused more by the rapamune.  So, I am attempting to cut some fat out of my diet.  I  never really worried about it before.  I thought watching my carbs and total calories  was  enough to worry about.  So I probably do have  some room for error.  And I am on a low dose of Lipitor.  My hope is to get my cholesterol back down with the Lipitor and keep it down with diet.

Day 70

My Epstein-Barr virus titer came back down to normal.  So whatever the problem was seems to be over.  I am still not sure that I understand exactly what it was all about.  I will be going back to Minneapolis soon, and will ask for an explanation.

My blood sugars have been good for the most part.  I  have had a few higher than I  would like.  The worst was a 186 after lunch.  I guess it shows that I am not quite there yet.  

I saw my endocrinologist for the first time since my transplant.  He was pleased with my results.  The good news is that my A1c is 6.1.  I was hoping for about a 6.5, so I am really pleased.  The lowest that I have been in recent years is a 7.0 and just before the transplant, I was 7.7.  

No more problems with the immunosuppressants.  I have had blood drawn to measure the levels of the rapamune almost weekly.  The values have been running high lately, so I have been decreasing my pills.  I started at 5/day, then went to 4 and then 3.  And during the EBV titer situation, I was decreased to 2/day.  After that was resolved, I went back to 3.  I had a blood draw yesterday, and am waiting to see how I am running on 3.