10 things I've learned from my islet cell transplant

I've been finding myself looking backward for awhile now.  Its been hard to accept that my islets are really gone.  I know that looking back is not a very positive thing to do, so I'm going to start looking forward now.  But, I thought I'd post this first. These are in no particular order.



1. Even a small C-peptide goes a long way.  I felt closer to cured at a 0.6 C-peptide than you would ever think.  Even a 0.2 helps.

2. Research doctors are not only passionate about their research, but are very compassionate and can't hear often enough how much their treatment has directly improved my life.

3. Although math is the best thing and the only thing we have to determine how to dose insulin, it is not at all reliable.  Its frustrating to hear an equation as the answer to a healthcare problem.  Its especially frustrating when the equation given is not for the mealtime that you considered the problem to be occurring at.

4. Technology is wonderful, but the nights are longer with a CGM.

5. Despite the diarrhea, mouth sores, anemia, and infections (viral and bacterial),  there is only one instance where I even began to wonder what I had gotten myself into.  That was the long night spent waiting for my units of blood to arrive while I was in the hospital.  In my 5 1/2 year stint, these are the only 6 hours I would trade for a day before my transplant.

6. The JDRF consists of so many people who are determined that no one should have to live their entire life with this disease.  Retreating is not an option and we will get this done.

7. Having diabetes and crazy fluctuating blood sugars really decreases energy levels.

8. Being involved in a clinical trial is just as important as it is rewarding.

9. Organ donation is a critical part of islet cell transplantaton.  Without donated pancreases, this vital step towards the cure would not have been possible.  (Until pig islets :))

10. Diabetes Alert Dogs and what and how they can perform is a real science.  Until the cure, these dogs can offer both physical and emotional support.


Now, I'm looking forward to whatever might come along to help or at least entertain me.

Fired Up for Clinical Trials

Its the 5th annual DBlog week
Day 1

The topic for today is:  What gets you fired up?

For me it would be participation in clinical trials.  My focus on diabetes since my transplant landed me in the heart of the research has been on finding the remaining path to the cure.  And the only road that I can visualize will depend on people signing up to participate in clinical trials to show that the research is indeed on the right path.

I'm not suggesting that anyone do anything that is dangerous.  These trials are set up to be successful.  There are health assessments and inclusion/exclusion criteria that screen out anyone who might not be healthy enough to withstand the treatment(s).

Another benefit of these trials is the amount of intensive health care you receive during the trials.  The doctors and nursed are very focused on what is happening both directly and indirectly from results of the treatment.

The trials usually pay for the medical expenses as well, so this is not a financial burden.  My insurance picked up the costs after the initial part of the trial ended very routinely.

And the biggest and most exciting benefit is getting to experience the benefits of the treatments much earlier than if you wait for it to become available to everyone.

I acknowledge the risks of this.  There are no guarantees.  But after doing some research into the procedure and the reputation and results obtained by the doctors and institution that you are involved with, it can be a very non-scary and extremely rewarding experience. 

My Islet Cell Transplant - I had a great run

This is the post I hoped I would never have to write.

I just reread this post and it really was not a sad post to write.  I enjoyed every minute of this experience.  The good and even the seemingly bad.  I have zero regrets and lots of good memories.  This experience has allowed me to meet so many interesting people and to do so many interesting things.  These things, I know, will continue indefinitely.  

I took my last immunosuppressant pill a few days ago.  That is the signal of the end for my transplanted islet cells.  They allowed me over two years of living my life without insulin and three more with a small dose.  It was one of the greatest gifts that I will ever receive.

During this last year, I experienced a few events that had to take precidence over the care of my islet cells.  The immunosuppressants caused some kidney stress and anemia which required a dramatic decrease in dosage to keep me healthy.  It was scary and disappointing at the time, but definitely necessary.  I also contracted a virus in my kidney, the BK virus, which did not respond to antiviral treatments.  I have been gradually decreasing my immunosuppression in hopes that I would clear the virus this way.

The anemia and kidney stress did get better, but the virus is still there.  I'm hoping to see it gradually fade away.  At this point it is only a worry and causes no symptoms at all.

Now I seem to back to where I was before my transplant in most ways.  I take about 18 units of insulin along with Symlin.  I don't have much control over my glucose swings.  I do seem to have some hypoglycemic awareness.

Its sad to have this amazing experience come to an end.  I miss my islets and the lifestyle that they enabled every day (minute).  This new (and old) way of life seems rediculus in comparison.  I know I can do this because I've done it before and I will be fine.  I feel so extremely lucky to have had this five year vacation.  It was more than I could ever have hoped for.  I hope to one day experience this level of good health and freedom again.

I'm probably going to redesign my website.  I have a few ideas for some changes.  The last two photos are pig islets.


Here are my latest lab results.

Chemistry tests.  

Cholesterol is 186.   HDL is 87.   LDL is 88.  Triglycerides 54

These are all good and almost identical to 6 months ago.

Kidney function tests.

Creatinine is 1.7  Normal is 0.5-1.3   This seems to be holding steady at this level.

Glomerular Filtration Rate is 31    Normal is greater than 60.   This is slightly down from 34 six months ago. 

This puts me into the bottom of Stage 3 Kidney disease.  Its based on the creatinine level which is elevated.

CBC.

WBC is 3.9 and absolute neutrophils is 2.4

Hemoglobin is 13.4   normal is 12-16

Islet function tests

A1c is 6.9  

C-peptide was 0.1

My tacrolimus level was less than 2   normal is 5-10

I was on 0.5mg/day at this point.  At one time I took 12mg/day

BK viral levels

Serum- detectable, but not quantifiable at less than 2.6

Urine - 4.4

These values will be considered my post-transplant normals I suppose.  It will be interesting to see if my creatinine will decrease towards my pre-transplant level of 0.5

Here is a comparison between pre-transplant and post-transplant (current) labs.

                          PRE     from 7/20/08                  POST
         
Cholesterol          133                                            186          I'm now on Lovastatin
HDL                      65                                              87
LDL                       63                                              88
Triglycerides         26                                               54
Sodium                139
Potassium            4.0
Chloride               107
BUN                      14
Creatinine              0.49                                            1.7
GFR                   greater than 90                               31
ALT                      72
AST                      33

WBC                    5.8                                               3.9    I just stopped all immunosuppression
HGB                   13.3                                              13.4
abs neut               3.3                                               1.0

A1c                      7.7                                               6.9
C-peptide           undetected                                      0.1    

Microalbumin         3  

I will fill in these results when I get them done.

JDRF Government Day 2014

This is my third JDRF Government day and it was just as special and as important as the first two years.

The format was the same as the previous years.  We had two days of learning about current JDRF issues like the Promise to Remember Me Campaign and the Special Diabetes Program.  This was again followed by two days on Capital Hill meeting with our legislators and education them about diabetes issues and the importance of funding for its research.


There were a few new things this year.  Jill, our GLT, is spending some time in China and was replaced with Paula.  She will be our new Government Relations leader for Ohio, Michigan, Indiana, and Kentucky.


We started the weekend with a research update.  I liked that the trend seem to focusing more on biological than Artificial Pancreas research.  That has always been my preference.  One interesting question on the artificial pancreas did make me feel a little better.  Someone asked Jeffrey Brewer about how an inconsistent continuous glucose monitor could be trusted to run an insulin pump.  The answer was first an acknowledgement of this issue and explaining how the monitor would be more focussed on the direction of the blood sugar swing, more than its actual value.  I was intrigued and relieved by that answer.

We had a nice dinner out on Sunday evening with our group.  We have a nice and varied group with some Type 1s and some Moms of.

Our meetings with the legislators were actually with their aides.  The aides were for the most part very friendly.  Senator Brown's aide was a little short with us and asked some questions on the involvement of the Special Diabetes Program and the "Doc Fix" that were a little beyond our understanding.  Luckily one of the Government Relations staff was with us to field her questions.  Time will tell whether this pairing of the SDP and the Doc fix was a good plan.  The other Aides were friendly, but not very knowledgeable of Type 1 and its issues.  I did my best to change that and to explain how close we are to getting some real relief.

Encaptra delivery system

Monday evening we all enjoyed an update from our CEO and leader, Jeffrey Brewer.  He is a very good speaker and always inspires confidence in our organization and its goals.  This time was now exception.  He began with a long description of what it is like to get a diagnoses of Type 1 diabetes.  I think we were all taken aback by its insightful and heartbreakingly real description.  Even with all of our combined experience, it was a shocking story.  I'm working on getting
an excerpt.

The most exciting part of the whole weekend was having Jeffrey Brewer tell us about and then show us what the newest research development was all about.  The JDRF is working with Viacyte to make an islet cell delivery system.  This device will be loaded with islet cells and inserted under the skin in the upper back.  It contains pores that allow the transfer of glucose and insulin, but not antibodies.  So, insulin will be released, AS NEEDED, in response to the circulating glucose levels.  But, no immunosuppression will be necessary because it will be protected by the sheet's membrane.
Clinical trials might begin as early as this calendar year.

This approach is also underway in a few other sites.  The DRI is working on their version called the Bio Hub.  In Edmonton, Canada, Sernova is working on their Islet Cell Pouch.  They are already in clinical trials.  There are two people on the Islet Cell Recipient Facebook page who are on the list and waiting for this procedure.  In California, the Hanuman Medical Foundation is working on the Islet Sheet.  And in New Zealand,  Living Cell Technologies is working on encapsulated pig islet cells with its Diabecell.  Diabecell is different from the others in that it uses a microencapsulation technique.  The individual islet cells are encapsulated.  The others use macroencapsulation by using some kind of container to house and encapsulate a large amount of islets.

I met Lorraine while waiting for the bus to take us back to the hotel.  We talked for awhile and it turns out she knows Dr. Hering.  She sent him this picture of the two of us.  He sent back a nice reply.  Needless to say, it really made my day!

I had some time to explore between my meetings and went to the Botanical Gardens.  I just loved this synchronized fountain.   These colorful flowers make me long for Spring.


I'm doing alright.  I had a PRA test drawn last week.  It will tell how many antibodies I have been exposed to.

My insulin needs and blood sugars are about the same as pre-transplant.  I'm using about 17-18 units of insulin along with Symlin at each meal.  

Islet Cell Transplant at 5 1/2 Years

Its now been 5 1/2 years since I had my islet cell transplant.  Here are the lab results from this point in time.  They are very similar to those of my 5 year checkup.

Chemistry tests.  

Cholesterol is 180.   HDL is 83.   LDL is 83.

These are all good and almost identical to 6 months ago.

Kidney function tests.

Creatinine is 1.7  Normal is 0.5-1.3   This is up from my previous 1.6

Glomerular Filtration Rate is 31    Normal is greater than 60.   This is slightly down from 34 six months ago. 

This puts me into the bottom of Stage 3 Kidney disease.  Its based on the creatinine level which is elevated.

CBC.

WBC is 4.1 and absolute neutrophils is 2.8

Hemoglobin is 13.1   normal is 12-16

I'm holding steady here.

Islet function tests

A1c is 7.1  This is exactly what it was 6 months ago.

Before Breakfast:   BG is 113.   C-peptide is less than 1

After Boost:            BG is 361  C-peptide is 0.2

I had some C-peptide testing done in September too.

Before Breakfast:    BG is 99    C-peptide is less than 1

After Boost:            BG is ?      C-peptide is 0.1

Just about the same.

My tacrolimus level was 2.7   normal is 5-10

It was 4.0 in September.  3.2 in October.

4.3 in November.  6.0 in December. 

Its so surprising to see it stay so high at my present low dose of 1.5mg/day.

I'm still having my BK Virus titers done monthly.  I can't seem to get rid of them, but they seem to be remaining at lower levels.

In November, the urine was 4.3 and the serum was less than 2

In December, the urine was equivocally present and the serum was less than 2

In January, the urine was 4.0 and the serum was less than 2

I'm taking about18 units of insulin/day and 30mcg of Symlin with each meal.  

Good times in California

I have had a few Staph infections and one more UTI (E. coli).  But other than that, I've been healthy.

Snowy days at home