Hypoglycemia unawareness study

I just got back from U. of Minnesota where I was able to participate in a hypoglycemia unawareness study.  The study uses subjects who are participating in an islet cell  transplant study as their subjects.  It is designed to see where the glucose is concentrated in the brain during hyperglycemia.  The test is run both pre- and post-transplant.  I did the pre test last winter and just finished the post-transplant portion this week.  The procedure is as follows:

I was given an infusion of glucose to raise my glucose to about 200 and then placed into an MRI chamber where the glucose could be measured inside my brain.  I had an IV in a foot vein so that my blood could be drawn every 5 minutes to verify the glucose level.  I also had another IV to infuse insulin if it my glucose level became too high.  I was in the MRI chamber for about an hour.

Afterwards, as a second part of the study, I was given enough insulin to get my glucose level down to about 50 to see how my body reacted to this.  Again, my blood was drawn every 5 minutes and it was recorded how much insulin and glucose I was given to maintain this glucose level.

The results will be compared together (Pre and Post-transplant) and with nondiabetic patients.  The idea is to see if a higher concentration of glucose in certain areas of the brain are related to having hypoglycemia unawareness and if so, how could this be treated.  Hypoglycemia unawareness is so potentially dangerous.  It is an important problem to be addressed.  

It was an interesting and rewarding visit.  I also got to meet another potential transplant patient who is just as excited about the whole islet cell experience as I am.  We had a lot in common.

I am including an image of my brain from the pre-transplant visit.  The MRI expert was nice enough to e-mail it  to me.  It doesn't mean a lot to me scientifically, but does prove of its existence to many who would have their doubts.

Day 200

Things are continuing to go well.  I have been getting quite a few questions lately from people who find their way here.  It is encouraging me to keep current with my blog.  It seems to be getting so long that I have been cutting back on my number of posts, just so that it doesn't seem so overwhelming.

The questions are  about 90% asking about the immunosuppressants. That was always my biggest concern too.  It doesn't make sense to trade one problem for  another.  So far, I  have had no serious problems with any of the drugs.  I may just be lucky or I may have landed in a protocol with more mild drugs.

One interesting observation that I have made lately is that I do still get some mild low blood sugars.  I just had one of 59 yesterday.  I would not have guessed that this  would happen.  I wouldn't think that the beta cells would over react like that.  Since it is only mildly uncomfortable and not at all dangerous, it doesn't really bother me.  It almost feels like "money in the bank" meaning that  I know that the cells are continuing to work well.  I still get some blood sugars that are higher than I would like (150-180), and it serves to remind me that I am not all the way normal.  I watch my number of carbs and continue to exercise to keep this from happening too often.  

Results from 180 day visit

I got my lab results back from my last visit to U. of Minn. for my 180 day check up. 

Here is a summary.

My A1c is 6.0  Down from 6.4

Fasting C-peptide is 1.17 2 hr post prandial C-peptide is 3.92

Cholesterol is 217 which is higher than last testing, but my HDL is 106 which makes that ok.

My rapamune (Sirolimus) level is within range.

My WBC count is 2.3

My absolute neutrophils count was 0.9 which is below the acceptable threshold, so I was given a shot of neupogen.  It is back  to acceptable now.

I had a kidney function test in which I was given an injection of Iohexal and with numerous blood draws it was determined how well my kidneys were able to filter it out of my blood stream.  The numbers don't mean much to me, but I understand that I passed the test.  I also had a 24 hr urine test that measured other facets of kidney function and I did well on that too.

So, all in all a good check up.  I wasn't surprised because my glucose logs and general health tell the same story, but it is still nice to see it verified. 

I have been exposed to some germy people lately.  My daughter is quite sick now, but, so far so good.

6 Months post islet cell transplant

Today is the 6 month anniversary of my transplant.  It continues to be a very exciting and rewarding experience both realistically and theoretically.  I still have a hard time believing that I can feel so good and that I have such an opportunity to be part of such a monumental experiment.

I had my 180 day visit last week in Minneapolis.  Despite the cold, it was a fun trip.  What made it fun was that I had  the opportunity to meet two other islet cell recipients.  A man who had his transplant in November and a woman who had hers in December.  They both happened to be there for checkups on the same day as me.  We spent almost an hour together comparing our experiences.  Both of them are on the same protocol as me (same drugs), and are having the same positive results.  Neither is off of insulin completely yet, but are at about the same level as I was at their stage.  We had very similar experiences.  We were all diagnosed in our early 20s, and were all  frustrated by our limitations.  We all seem to be tolerating the immunosuppressants well, although both my and the woman's white counts were under the lower limits of the protocol.  We both had an injection of neupogen to raise our white cells.  I didn't feel any different either before or after and I haven't been sick, so it wasn't a big concern for me.  

It was so nice to be able to share our experiences.  I now know three transplant patients from U. of Minn. and a few others that I have met on line.  I also get some good questions from people who read my blog or participate in discussions on the Tu Diabetes website.

Schulze address

I had my 180 day visit to  Minneapolis on monday.  More about that when I get all  of my lab results.

I was  able to get the address for the Schulze family foundation.  I feel strongly about writing them a thank you letter for their donation.  I was able to see and congratulate both Dr. Hering and Dr. Bellin during my visit.  They are both please and excited about the possibilities that this amount of money will provide.

Here  is the address.  I  hope that anyone who is excited about islet cell transplants and other approaches to  a cure  for  diabetes will send a note.

RM Schulze Family Foundation

8500 Normandale Lake Blvd.  Ste. 1750

Minneapolis, MN  55437