Increase in immunosuppressant levels

I took these pictures with my cellphone after my appointment at the research clinic.  It was a beautiful day, so I took my usual walk along the Mississippi river.  

I returned home from my visit to Minneapolis on Tuesday evening.  On Wednesday, I got a phone call saying that my drug levels were too low and I needed to make a significant increase in both.  

Unfortunately, the increase has caused me to practically start over with the adjustment period with the new drugs.  I was tired, nauseated, and had a terrible headache.  By Friday, the nausea was bad enough that I was afraid I might have to leave work, so I called and spoke with Dr. Bellin.  She suggested trying Tums.  I did and they worked surprisingly well.  It got me through the day and has helped me get through the rough spots.

I have been slowly getting better as the days go by, but my stomach still bothers me a lot.  I am hoping that time will help me get through this as it did before.  It is easier the second time around.  I don't have the fear that this might be permanent like I did before.  I also know from the bloodwork done at my visit that I am not dehydrated or out of synch in my body chemistries.

The good news was that my C-peptide numbers were great.  My fasting was 1.27 and my postprandial was 5.29.

More evidence that my cells are happy with these crazy new drugs.

270 day post transplant visit

I have been feeling better lately on the new drug regimen.  I found that Citracel comes in a tablet form and that has made a big difference in my stomach problems.  Gary and I took a long bike ride on Saturday, and I didn't get tired or nauseated.  I feel back to normal.

Twice now, I have given a talk about my islet cell transplant experience at the community college where I teach a microbiology lab.  I have really enjoyed doing that.  The students seemed very interested.  Of course, no one had ever heard of the topic before, and it was rewarding for me to be able to share my experience.  It feels somehow important that I do that.  In my research for the presentation, I found that I am one of only about 300 people in the world who have had this done.

I had my 270 day visit in Minneapolis on Tuesday.  As usual, I enjoyed myself.  The whole staff is just  so supportive and so interested to hear how I am doing.  I have a steady stream of people coming in to visit or that have some business with me.  I really feel that I am part of a big project and since the project seems to be going so well, it makes it all the more exciting.  I was happy to report that I have adapted to the new drugs.  It sounds like all of the patients in this drug protocol are having similar experiences.

I had a nice walk by the river and lunch with a few of the people on the staff.  It was just great.  The only bad thing that happened was that the airline almost lost my carry-on on the way home.  That sound like it should be impossible, but it is not.  I have to have  some bad travel luck  I guess.

I have not got all of my lab results back yet, but my A1c is 5.6 which is phenomenal.  I guess my new islets like the new drugs just fine.

New drug issues continued...

I am now finished with the Raptiva/Rapamune drug regimen.  They should soon be out of my system and I can see how the new drugs are treating me.  I  think that my energy level is better, but my stomach is still uncomfortable.  I have been taking Metamucil, but it has not helped much.  I miss my coffee.  It just doesn't sound good anymore.

Most importantly, my blood sugar levels have been good.  I have had a few higher ones since I started the new drugs, but they seem to be getting fewer and not as high.

I suppose that having side effects of the immunosuppressants like I am having now is more what I expected pre-transplant.  I think that I was just very lucky with the first set.  Hopefully, the Prograff and Cellcept will settle down somewhat, but all that really matters is that they protect my islet cells.

Drug transition issues

I have had quite a week with these drugs.  I began the week feeling tired and with some stomach problems.  On Wednesday, I woke up with a bad headache that lasted more than two days.  Dr Bellin thought that I was feeling worse than what she would expect from the drugs and suggested that I get in to see my doctor here.  I was also drawn for a CBC to check my WBC count, and an Epstein-Barr virus test.  My glucose values are good  for the most part, but I am having some higher than normal post-prandials.  Some are in the 150-170 range.

The result of all of this are as follows:  My CBC was normal.  My EBV test was a little elevated, but not enough to  cause significant symptoms.  The question is whether we are catching it on its way up or down, so I will have that drawn again on Monday to compare.  My headache went away by Friday, much to my relief.  I was so afraid that it was a symptom of one of the new drugs and that I might have to live with it.  I am still feeling good about that problem being solved.  It has even encouraged me to begin to work on some of the others.

At the doctor appointment, I was tested for thyroid function, liver function, kidney function, nervous system testing, another CBC, and a test for CMV.  Everything was normal.  I did not really have a regular doctor here, so if nothing else, it forced me to get established with a new doctor.  Dr. Hicks seemed good.  I was able to get in quickly and she called me the next morning with the lab results.

I was able to correspond with one of my fellow islet cell recipients who is in the same protocol and going through the same transition  as me.  He  is having the same problems that I am.  I think we were both relieved to  hear that.

So, I am trying the BRAT  diet to calm my stomach. (Bananas, Rice, Applesauce, Toast).  So far, not any difference, but it has only been two days.  I am still tired, but am trying to work through it.  Resting doesn't really seem to help and my glucose values are higher when I just sit around.  

I  have progressed in the weaning of the old drugs.  I am down to two Rapamune pills/day. (from 6).

In spite of the physically difficult week, I sure grew to appreciate all of the support I have.  I was on the phone several times daily with Janet, my support person and Dr. Bellin in Minnesota.  My coworkers sent me home early with only concern and sympathy.  And of course, Gary is always ready and willing to do whatever  is needed.

Thanks for the comments and e-mails.  I appreciate them  all.

New Drug update

The drug levels for both the new immunosuppressants (Prograff and Cellcept) came back within the therapeutic range.  This meant that I  can start the weaning process of the Rapamune.  On Thursday, I started taking 4 pills a day instead  of 6, and will decrease by one pill per weak for four more weeks.  I took a dose of Raptiva today, and will take my lasts dose of that in 2 weeks.

I am still feeling very tired.  Dr. Bellin said that the drugs should not really be causing this, and maybe  we need  to worry about the Epstein-Barr virus again.  I hope  not, but I want to find out what is causing this so we can find out how to make it go away.

My blood sugars have remained pretty good.  I did have  one high one (178) and one low one (55).

I  had a nice day yesterday watching Gary's indoor track team win the State Championship.  It was very exciting. This is his his team on the podium.