Wednesday, March 26, 2014

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.  

Monday, February 10, 2014

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.

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

Thursday, November 21, 2013

Islets statistically present

In the past few months, I've been concerned about the health of my islet cells.  My blood sugars and insulin needs have been on the increase.  Its been more and more difficult to keep my blood sugars under control.  My lab results have been telling the same story.  My fasting C-peptide was undetectable and my A1c had climbed to 7.3.

To give my islets a chance of detection, a post-prandial C-peptide was ordered.  Its always a little higher because the islets are working harder after a meal.  This test showed a C-peptide of 0.1.  For comparison, my last post-prandial was 0-6.  When my islets were new, it ran from 3-6.

So, this was not good news.  I suppose an undetectable result would have been worse, but this is probably the lowest possible detectable amount.  I had an appointment with my endo last week.  He agreed that it didn't look good.  But then he looked at a scatter plot of my blood sugars from the last three months.  The standard deviations around the points was also given.  He said that my variation looked more like that of a Type 2 diabetic than a Type 1.  So, he thinks I still have some islet function.  This is good news.  It means that I'm still getting some help from my islets, and I'll take whatever I can get.

My A1c was 6.8 which is better too.  I'm sure both of these readings were elevated due to the stress of the infections that I was dealing with.

So, I'm in a kind of limbo at the moment.  I would never give up hope, but I can see and understand what is probably happening.  Another chapter in my amazing islet experience.

Ironically, I feel fine now.  After a very LONG chain of various health events, I seem to be through almost all of it.  I still have the BK virus, but that has no symptoms.  My energy level is less than it was when my islets were functioning at a higher level.  I do miss that.  My creatinine is down to 1.6 and I don't need to see my nephrologist for 8 months.

Senator is getting a workout alerting to my highs and lows.  That part is fun and exciting.  I'm very pleased with his progress and feel that he will be a help with my health.  The cuteness of his alerts and the pride I take in our training of them really helps to dull the sadness of the need for his alerts.

Wednesday, October 30, 2013

Back to Back Bacteria

It seems that since my immunosuppression was decreased, I've had more infections than when they were at full strength.  It seems very ironic, but is probably just some bad luck.

While we were on vacation this summer, I got a very small infection on the base of my thumb.  I woke up with a little blister which I popped and treated with neosporin.  It got worse as the day progressed and I seriously considered going to urgent care that evening.  But that seemed premature.  It was only one day old and I thought I should give the neosporin a chance to do its job.  My morning it was much worse and we did go to urgent care.  They prescribed Bactrim and sent me home.  Two days later it was worse, so I called and they put me on Cipro.  It continued to get worse.  My hand looked like a blow-up glove and the swelling was half down my arm.  So two more days, I went to the ER.  They sliced it open, put antibiotic and a hydrogen peroxide treatment into it to clean it out.  I was also put on Clindamycin.  It was cultured and identified as Staph aureus, but not MRSA.

This seemed to work.  I had to leave the wound open for several days and continue the hydrogen peroxide treatment on my own which was no fun, but it was getting better.  After a few weeks, the swelling went down and I was back to normal.

Then, in early October, I came down with a fever and diarrhea.  It didn't clear on its own so I went to the doctor.  It turns out I have C-diff.  Its a bacteria that takes over when a person has been on antibiotics for awhile.  It was probably the Clindamycin that caused the C-diff.  Its unusual to have that long of a time-span between, but possible.  So, I was put on another antibiotic, Flagyl and that seems to have done the job.  I tested negative for C-diff last week.  I'm feeling better and my blood sugars are coming back down.  They were really high during the C-diff experience.

Now the worry is about my islets.  I had my quarterly labs done last week.  My C-peptide was undectable and my A1c has increased to 7.3.  Dr. Bellin is having me do a stimulated C-peptide to see if there will be any C-peptide activity after having some carbs.  I'm very anxious to see how this comes out.

Friday, August 23, 2013

Lab results from islet cell transplant at five years

Here are the lab results at 5 years post transplant.

Chemistry tests.  
Cholesterol is 181.   HDL is 84.   LDL is 87.
These are all good and an improvement from last year.

AST is 23.   Normal is 10-42  
All my hepatic function tests were normal
Total protein is 7.1 and Albumin is 4.2    both normal

My potassium is back to normal now and I no longer have to take kaexolate to lower it.  I am still following a low potassium diet, but not as stringently.

Kidney function tests.
Microalbumin is 0.7    Normal is less than 1.9

Creatinine is 1.6  Normal is 0.5-1.3  At 4 years, it was 1.7.  So after all that I've been through this year, I'm back to where I was before it began.

Glomerular Filtration Rate is 34    Normal is greater than 60.  At 4 years, this was 31, so again slightly better
This puts me into the bottom of Stage 3 Kidney disease.  Its based on the creatinine level which is elevated.
My Blood pressure was 110/70.

WBC is 4.2 and absolute neutrophils is 2.6

Hemoglobin is 12.8   normal is 12-16
Its good to see this number back to normal after my experience with anemia

Islet function tests
A1c is 7.1  This is higher than its been this year.  Its most likely due to all of the infections that I've been fighting this year.  (5 UTIs, recent one on my hand, and the kidney viral infection).  

Before Breakfast:   BG is 153.   C-peptide is 0.2
After Boost:            BG is 313  C-peptide is 0.4
Compared to last year, the post prandial is much lower.  This is disappointing and worrisome.  My blood sugars are running much higher and my insulin requirements have increased.  This could be the reason.
I now take about 14-15 units of novolog/day.

My tacrolimus level was 2.2   normal is 5-10

Because of the viral infection, I have to remain at this very low dose.  Dr. Bellin says that increasing my immunosuppression would most likely allow the virus to gain strength and we can't allow that to happen.  It is certainly a worry especially while my blood sugars are increasing.  There is nothing I can do except to try to manage them as well as I can.  I'm trying to look at it as positively as I can.  Instead of worrying that I'm rejecting now, I'm saying why am I rejecting now after all this time at the lower dose?  

Needless to say, I hold my breath at each BG reading.
At 4 years, I was taking 10 units of lantus and 1 unit novolog/meal.  So that's really not that far from where I am now.  

My BK viral titers have been fluctuating, but trending downward.  The latest test showed undetectable in the serum and 2.6 in the urine.