Edmonton Protocol celebrates 10th Anniversary

I just read that the Edmonton Protocol has celebrated its tenth anniversary.  I still remember reading about it for the first time back in 2000 and getting really excited about it.  At the time, islet cell transplants seemed to be not only the cure, but very eminent.  I asked my endocrinologist about it and he thought maybe it would be another 5-10 years before it would be available to all diabetics.  I was disappointed that it would take so long.  It just seemed right.  I could never get too excited about the technological advances like the pump or monitors.  I knew that we needed biology, not hardware to really make an improvement.

During the next eight or nine years, I would occasionally read an update from Edmonton.  Some of the patients were still insulin independent, some had rejected the transplant, and some were in between.  There wasn't much national coverage, and my internet skills were not strong enough to keep me very current.  Little did I know that it was actually an ongoing project and that it had been advancing in the U.S. as well.  The centers that are performing islet cell transplants are all using the  protocol that originated in Edmonton, and are comparing different immunosuppressant regimens to see which works best.  Clinical  trials are advancing through the levels with the hope of gaining the FDA approval necessary to open the procedure to the public.

I still am just amazed and so proud and pleased to be one of those islet cell  recipients now.  As I  mentioned above, I knew right away that this was a good thing and I still feel strongly that islet cell transplantation is the monumental advancement needed to reach the cure.

And another increase

After I was getting adjusted to the new dose of Cellcept, I got another call from Minneapolis and it turns out that I am still not up to the therapeutic level of either drug.  So now I am on twice the amount of Cellcept from the initial dose, and almost twice that of the Prograf.  It caused another backslide for both my stomach and energy levels, but at least no headache this time.  I am glad that the doctors are being conservative and being sure that my islets are protected, but I will be glad when things are stable.  The weather has been getting nicer and I am looking forward to being outside soon.  I am hoping that my energy will be back in time to really enjoy it like I did last summer.

I also just found out that I did not get good results on my bone density test.  So now I have to take Boniva.  I ran it by Dr. Bellin and it is not incompatible with my other drugs.  Just one more pill.  It has been awhile since I got a bad lab result.  I've been spoiled lately with all the success of the transplant.

I am having blood drawn again tomorrow to recheck my drug levels.  I hope to be at or even above the therapeutic levels by now.

This is my daughter and her boyfriend who just got back from Iraq. She was able to travel to California to meet his plane.

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.