Islet cell transplant - Day 1000

Today is my 1000th day since my transplant.  I keep track of this number on my blood sugar logs and this feels like an important one.

Everything is going will with my islets in general, but lately I have been having some problems with getting colds.  Since Feb. 1st, I have had one cold after another.  Sometimes upper respiratory, sometimes GI, and this last one has been both.  To make matters worse, my BGs and insulin needs increase during these bouts.  That makes me worry about my islets.

As of now, I am feeling much better.  My BGs are back to normal and my insulin as of yesterday has returned to 8 units/day which is my normal.  I am blaming it on our lousy weather and the fact that I have to be out in it more to take Dolly out.  I have been recruiting more help with this since my last bout of illness and that seems to be helping.  I think I have developed an actual fear of the cold weather.

Dolly is continuing to do well.  Her housebreaking is almost perfect.  She has learned her "sit" and "down" commands and comes when she is called.  We are working on barking for attention and jumping on people.  She also has shown some submissive/fear behavior with other dogs that we are trying to recondition.  She is very eager to learn and is lots of fun to play with.  She is beginning to get the idea of fetching.



I went to a very interesting lecture this week at the community college where I teach.  The topic was stem cells and the speaker was Arnold Caplan who is the founder of Osiris Therapeutics.  He did a wonderful job of explaining how adult  stem cells are harvested from body sites like bone marrow and fat cells and described the various applications of the products. The harvesting process is similar to that of my islets from the pancreas.  The cells are removed and isolated through centrifugation.  The stem cells are next exposed to specific enzymes that direct which type of tissues they will become.  The cells, called mesenchymal cells, are originally located on blood vessels.  Their function is to repair the vessel if it becomes damaged and to neutralize the immune system so that the repair work will not be compromised.

This topic was extremely interesting to me because I know two people who have had stem cell treatments for their diabetes.  Sandra, whose son had a treatment with stem cells from his bone marrow, and Eliza who had her treatment with her own adipose cells.  Both have had positive results.

I told him about my islet cell transplant and he seemed very interested.  I explained to him that if my islets don't last forever, that maybe stem cells might help.  I asked Dr. Caplan if he thought I had enough of my own islets left to repair and he didn't think so.  I asked about the islet cell pouch procedure which could be loaded with stem cells.  He thought that would probably not be available in time for me.  He did say that he believed that my problem was not my islets dying off, but my long term exposure to the immunosuppressants.  He strongly recommended that I ask my doctors about the possibility of a stem cell treatment.  The stem cells have an immunosuppressive effect and could possibly allow me to lessen my current dose of immunosuppressive drugs.  I said that I would ask about it, and I will.  Now that I have had more time to think about it, I realize there would be complications with doing this.  First of all, it would compromise my data for the study.  I am still committed until my 3 year anniversary which is in July.  Second, how would you calibrate the dosage of either the stem cells or the immunosuppressive drugs?  I would be afraid to risk the possibility of leaving my precious islets unprotected.  I am planning on having this discussion with both my endo here and with the doctors in Minn.  It will be very interesting to see what they think, as always.



The beginnings of Spring!
Hopefully, straight to Summer.

Dolly- our service dog in training

We are fostering a service dog.  We got her almost 3 weeks ago.  Her name is Dolly and she is doing very well.  She is taking up most of my spare time, but she is cute and its fun to be with her.

Its very different raising a service dog.  There are so many rules that we must teach and enforce that we didn't with any of our other dogs.  Right now, the most difficult rule to teach is keeping her off of the furniture.  It would be easier if we didn't already have Callie who is allowed up on things.  That inconsistency is hard, but what is really difficult is that they play and chase around the house.  Callie escapes to the couch and it seem natural for Dolly to follow.  We're working on that one.

There are several commands that we are attempting for this first month.  She has mastered "come", "sit", and "down".  We are trying to incorporate "lets go", "leave it", and "give" into daily routines.  It will be much easier when this awful weather breaks and we can go on some enjoyable walks.  Several of the commands lend themselves well to walks.  The "give" command should inspire some good fetching.  One of the things we can't do with her is tug of war. Since that seems to be what we do with dogs to play, it has been difficult to interact sometimes.  I'm hoping that the fetching will be fun for both her and us.

Literally everyone who we have told about Dolly asks how we will ever be able to give her up in a year from now.  It will be difficult. Very.  But, even from the get go, she feels somewhat like she already belongs to someone else.  She will have a purpose to her life.  The different rules help to reinforce this feeling.  We are already very attached to her and proud of her.  But someone else will love her and also need her.  I think the one who will have the hardest part dealing with her absence will be Callie.  She can't know of the reasons for her departure.  But, it also may happen that Becky decides to move on in the meantime.  Life is uncertainties.

As for me, I have been getting a few colds this winter.  It began in early February with a chest cold.  I had to take amoxicillin for that.  It lasted most of 3 weeks.  Then I had some stomach problems.  That lasted about 2 weeks.  Then, just last week, I developed an upper respiratory infection.  Just some sniffles and coughing and general tiredness.  I'm feeling much better now, so that one was much easier.  I'm not sure what the difference is this year.  This is the most I have been sick in many, many years.  I usually don't get anything.  I have always credited the flu shots for that. This is more what I expected to happen since I was immunosuppressed.  I don't know if I was just lucky before, or unlucky this year.  My blood sugars almost directly parallel my symptoms which I find even more interesting than frustrating now.  It doesn't bother me so much now that I know it will probably come back to normal.

Stem Cell Science Vs. Politics

In Minneapolis right now, there is a rally taking place to try to stop a bill from being passed that would ban stem cell research.   The story can be found in the Minneapolis StarTribune.  The group that is driving this debate is the Minnesota Citizens Concerned for Life.  If this bill would pass, it would not only hinder important research done in Minnesota, but could spread to other research centers as well.

Their argument is under the guise of human cloning, but would cut much deeper.  The stem cell research that is focused on curing diabetes and other diseases is not based on cloning at all.  Much of this research uses adult stem cells which are taken from living humans and sometimes uses cells from the patient's own body.  Embryonic stem cell research uses cells from cell lines that are already created.  The cells are not fertilized with only research as an end result.  They are already present and would eventually be discarded.

Our country is already behind many others because of the strict ban imposed by President Bush.  Many of our citizens are going to other countries for treatment in centers that might not be as accredited or even as safe as our own would be.  This science is destined to evolve with or without the support of groups like this one.  It will be a major milestone in the human condition when we have the capability to cure or suppress terrible diseases with this mechanism. Our country should be a part of this.

It is a shame that a small group of single minded people could have such a devastating effect on research that could save so many lives.  I wonder how many of them really understand the biological and ethical implications of what they are trying to accomplish.

Diabetes Research Summit interviews

The interviews of myself and Dave T. were just posted at the Diabetes and Research and Wellness Foundation site.  I'm hoping that the other interviews will be available soon.  Watching these brings back so many good memories.  It was such an exciting and important event.  I hope that it generated both interest and funding for this research.  I still have the impression that islet cell transplants are not well known or understood even in the diabetic community.  I continue to read blogs written by diabetics and online magazines and social media and see that so many diabetics honestly don't have hope for a cure in their lifetimes.  I add my two cents whenever I can, but still reach only a small percentage of this population.

As for the state of my health, it has been very up and down lately.  Both my general health and my blood sugars.  It is very interesting to see how they directly parallel my symptoms.  I already wrote about the cold that I had in early February.  It lasted about 19 days and required antibiotics.  When this subsided, I had about a week of feeling good.  My BGs and insulin needs went all the way back to normal (8 or 9 units/day).  Then,  I developed some intestinal problems that lasted most of 2 weeks.  My BGs and insulin needs both increased again, although not as much.  I was very concerned that it was due to my immunosuppressants that have needed increases in dose for the last few months.  But, either I have acclimated to that, or I am over something that I was infected with.  Now, I feel fine again.

I have just returned from a very nice trip to California.  My Mom and I went to visit Gary in Santa Barbara and Cassie in San Clemente.  It was so extremely nice to see them and the sun. Of course,  we were there during the tsunami warning.  We were able to avoid the beach that day and I understand that not much happened anyway.

We returned early this morning.  Today, my day will be to puppy proof the house and go pick up a puppy from the Assistance Dog of America Inc.  I have decided to foster a service dog for the first year of its life.  I'm sure that it will be both lots of work and lots of fun.  I will be posting updates of this adventure.

Islet cell transplants can be cost effective as well as increase the quality of life- a study

I recently found this abstract and thought it was very interesting and exciting.  I was able to get a copy of the entire article from a friend, thanks Jason, but can't print all of it due to copyright laws.  I am going to attempt to write about the highlights of what this shows.

A health economic analysis of clinical islet transplantation

Keywords:

• cost;
• cost-effectiveness analysis;
• economic model;
• health economics;
• islet cell transplantation

Beckwith J, Nyman JA, Flanagan B, Schrover R, Schuurman H-J. A health economic analysis of clinical islet transplantation. Clin Transplant 2011 DOI: 10.1111/j.1399-0012.2011.01411.x. © 2011 John Wiley & Sons A/S.

Abstract:  Islet cell transplantation is in clinical development for type 1 diabetes. There are no data on the cost in relationship to its benefits. We performed a cost-effectiveness analysis and made a comparison with standard insulin therapy, using Markov modeling and Monte Carlo simulations. The patient population was adults aged 20 yr suffering from hypoglycemia unawareness. Data were estimates from literature and clinical trials: costs were based on the situation in the United States. For insulin therapy, cumulative cost per patient during a 20-yr follow-up was $663 000, and cumulative effectiveness was 9.3 quality-adjusted life years (QALY), the average cost-effectiveness ratio being $71 000 per QALY. Islet transplantation had a cumulative cost of $519 000, a cumulative effectiveness of 10.9 QALY, and an average cost-effectiveness ratio of $47 800. During the first 10 yr, costs for transplantation were higher, but cumulative effectiveness was higher from the start onwards. In sensitivity analyses, the need for one instead of two transplants during the first year did not affect the conclusions, and islet transplantation remained cost-saving up to an initial cost of the procedure of $240 000. This exploratory evaluation shows that islet cell transplantation is more effective than standard insulin treatment, and becomes cost-saving at about 9–10 yr after transplantation.

This study has attempted to compare the cost of managing Type 1 diabetes by intense insulin therapy to the cost of intervention with an islet cell transplant.  Also woven into the design is how both affect the quality of life.

It begins with data on islet cell graft survival.  I converted their graph into a chart.

one year results:     full function= 93%         partial function= 8%         no function= 0%

five year results:      full function= 47%         partial function= 37%       no function= 17%

ten year results:       full function= 27%        partial function= 49%        no function= 24%  

This shows that most recipients make it to one year, and half make it to five years with no insulin.

And that half make it to ten years with at least partial function.

This is very positive.  Its personally disappointing to me because I am behind the curve.  I only made it 2 years with no insulin, but it gives me hope that I will remain where I am for awhile which is still at a very good place.  This data reflects what I notice from the cast of characters on the islet cell recipient facebook page as well.

The Quality of life variable was very complicated and I am going to simplify it greatly.  It was comparing how the hardships of each treatment affected the quality of the patient's life. The values ranged from 0 which is worst to 1 which is best.  The values that I thought the most interesting were:

A healthy person aged 25-34 had a quality of life valued at 0.91

A diabetic aged 25-34 had a quality of life valued at 0.81    If this person had hypoglycemic unawareness, which all recipients do, a reduction of 0.06 put this pt at a 0.75 quality of life.

From here, adjustments were made base on diabetes causing complications that the insulin group would face, and side effects and graft failure issues that the transplant group would face. A graph shows a mostly parallel line with the transplant group slightly ahead of the insulin group.

Then came the cost analysis.  The numbers themselves were stunning.

Cost of the organ procurement was $25,000.

Cost of harvesting the islets was $20,000.  with a 50% success rate means $40,000.

Cost of immunosuppression was about $1400/month

Cost of transplant was $93,500.  Each successive year was $19,000.

Cost of insulin therapy/year was $6,600.   The cost of having complications varied from $106,000 for renal failure to $1,400 for neuropathy.

Combining these two variables shows that initially the transplant is more costly.  But, over time, as the cost of the transplant stabilizes, the cost of insulin therapy and its long term complications increases.  This study covered a span of 20 years.  At about 9 years, the costs intersect and the islet cell transplant remains the lower cost option.

Interesting numbers here were:   

20 year cost of insulin therapy was $663,000.  Quality of life years gained was 9.1.

20 year cost of islet cell transplant was $519,000.  Quality of life years gained was 10.9  

The article goes into much more detail, but these are the highlights.  It also includes a discussion about how the transplant procedure is expected to improve.  This has already proven to be true in that due to a change in an enzyme used in the harvesting procedure, more islets are now obtained per pancreas than when I had my transplant in 2008.  And there is much more on the horizon............