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

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.

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.

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.

CBC.

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.

Islet Cell Transplant at 5 years

Its a cold rainy day in early August and a good day to sit down and ponder this last year.

This last year has been all too eventful.  I've seen the down and dirty side of immunosuppression and its side effects.  I'm a long way from mouth sores now!  I've had anemia that led to getting a transfusion of 3 units of blood.  Diarrhea that led to a colonoscopy.  And a viral infection in my kidney that led to an inpatient antiviral infusion and then more as an outpatient.  Immunoglobulin therapy. Two kidney biopsies.  And finally, the drastic lowering of my immunosuppressant doses and hoping for no rejection of the islets.  I've now had 5 urinary track infections and just recently an infection on my hand that led to the ER, three different antibiotics and some more time off work.  I started back on the pump and have watched my blood sugars go crazy through out all of this.  And rightly so.  I also am trying symlin to help keep my morning post-prandials lower.

I now have a endocrinologist, nephrologist, infectious disease dr, and of course my transplant and general doctors.  I'll be adding a urologist next week because of the UTIs.  I did have a hematologist, but have been released from her.  So, I've had a few doctor appointments this year as well as a few urgent care visits and two stays in the hospital.

While I'm at it, I've also had some shoulder muscle strains that had me almost immobilized for awhile and a strange pain in my foot that really bothered me and sometimes still does. I've had to adopt a low potassium diet which I hate and which runs counter to a low carb diet.  These things along with the UTIs really bothered me more than the other things because it just seemed so unfair to have them while I was already dealing with so much. I don't really mind the things that are directly involved with or caused by the transplant.  None of that will ever offset the positives that I have gained from the transplant.  And I do think that some of the things that have caused me pain and harm are adding to the wealth of information on the whole process.

Its still amazing that I haven't totally rejected my islets throughout all of this.  I have all but given up hope several times.  And they keep coming back.  Even now my BGs are running high and I'm wondering...

I'm very pleased and proud to have made it this far.  My islets are tough, but I think I have learned a lot about keeping myself strong and healthy in the face of adversity throughout this year.  It hasn't been my easiest year, but I honestly have no regrets.  I'm very luck to have the good insurance coverage that I do.  I don't think I would feel this positive if I had to carry the financial part of this experience.  I'll give them a shout out after the statute of limitations runs out.  I'm thinking I might be flying under the radar now:)  And of course, Gary has been so strong and supportive throughout each turn of events.  I couldn't have done this without him.

July 21, 2013

So, happy 5th anniversary to me and my new islets.  As crazy as this year has been, and reading back over what I have just written has caused me to gasp a little, I still say this is easier than a year with Type 1 diabetes.  I never once lost my ability to concentrate at an awkward moment, or had to stop playing a game or enjoying a conversation or stop what I was doing at work.  And more importantly, I have hope for the future that I didn't before my transplant.  Hope can make the little things seem tiny.

I'll be posting my 5 year lab results soon.  Hopefully, on a warm sunny day.

BK virus-still in the picture

I had my kidney biopsy done and the results were mostly good.  I heard from Dr. Bellin that there was no active inflammation found which means that I can continue with this dose of immunosuppression.  She was however concerned that the biopsy did show some scarring.  She said that it might require follow up with my nephrologist.

So, I contacted Dr. Al Sabaugh's office to see what she thought about it.  I heard back through her nurse that yes there is scarring and it is most likely due to past infections.  I assumed this meant the BK virus since there was no mention of scarring with my previous biopsy.  I was told that she would discuss this with me at my next appointment.  Since this isn't for three more months, I'm assuming that she isn't overly worried.  So, I'll choose not to as well.

Just after the biopsy, I discovered that I had another urinary tract infection.  My 4th.  I had one in March that grew the same thing, coag neg Staph.  The first one was probably E. coli and the second was never cultured.  All are within the last six months.

My BGs have been running higher.  My fastings were sometimes slipping into the 120s.  When I started my antibiotic, they went back down into the 90s and 100s.  Lately, they have been trying to climb back up again somewhat.  Maybe the nitrofurantoin (antibiotic) is causing it?  This is my hope of course, and not that I'm rejecting.  Time will tell.

I'm having my BK viral levels tested monthly now.  I was just drawn yesterday.














These are pictures of our ash tree.  Its one of the very very few that have survived the infestation of our region by the Emerald Ash Borer.  The first picture was when I saw the first bud forming and gained some hope for it.  The second picture is from today.  If this tree can stand alone against an invader, just maybe my islets.....................

BK Virus update and Symlin

I'm still fighting this virus.  For the last few months, the levels have been fluctuating between gone and low levels.  Since the goal is to have it be gone, we're not quite done with it yet.  Here are the recent test results.

Date            Serum BK                                     Urine BK                                       Creatinine
5/10/13     Detectable, not quantifiable                 4.1                                             
5/23/13     Detectable, not quantifiable                 3.4                                               1.6

My 1.6 creatinine is the lowest its been in a long time.  That is a very good sign of better kidney health and I'm thrilled to see it.  My potassium was down to 4.1 which is also the lowest its been in a long time.  I no longer have to take kaexolate every week to keep it down.

The next step is to have another kidney biopsy to determine if the virus is still causing active inflammation in my kidneys.  If it is, then I will probably have to stop my immunosuppression altogether.  I'm only taking 1.5mg/day now which is almost nothing.  Since my islets seem to be functioning well, its worth having the biopsy first.  

My recent A1c was disappointingly and surprisingly high.  The previous result was 5.9.  It went from there to 6.9 and then down to 6.5.  I really expected it to be lower than the 5.9.  My BGs were very very good.  

The only clink in the amour seemed to be right after breakfast.  This is the most common time of the day to be the weak point and it always has been for me.  My 2 hour post-prandials were ok, but Senator had been alerting me before that time.  When I would check to verify that he was right, I would commonly find myself in the 200s.  I didn't worry too much about it because I knew that I would be down soon.  The few times I covered for it, I had a low before lunch.  I thought it was just a good training opportunity for Senator.

But, the higher A1c has made me look at this differently.  At my appt with my endo, I mentioned this and we decided to put me on Symlin.  Symlin is supposed to cover those peaks in BGs.  I tried to bargain the starting of symlin for going off my pump, but no such luck. I'm doing both.  Dr. Gundabolu is very conservative with my islets and I can't fault or argue with him for that.

So far, the symlin doesn't seem to be helping much.  I started with the lowest dose.  15mcg/day.  When I was still having the highs, I started adding the insulin back in and I am almost back to where I was.  I'll be calling in my BGs soon and will expect an increase in symlin.


I hope to be spending many a warm sunny day in a kayak.  Here is the first of the season.

My Diabetes Art (and some pigs)

Today is Diabetes Art day for the Diabetes Blog week assignment.  I'm not a very artsy person, but I did create these two t-shirts.


This one is for my JDRF walks.

And this one was created as a gift for the transplant team.  I gave them theses shirts while I was there for my one year check up.


Can you spot the hidden pigs in both?

Accomplishments Big and Small

The next topic for Diabetes Blog Week is Accomplishments- Big and Small.

Well, my accomplishment is realized in hindsight.  Now that I am controlling my blood sugars with the help of my islets and some insulin, I realize how difficult it was before I had the help of my islets.  Looking back, I don't know how I did it.  Since I couldn't control or predict what my BGs would be, ever, I assumed that I just wasn't doing something right.  It was frustrating and at times, discouraging.  Since quitting is not an option, I just felt that I was plodding along hoping for better technology or some great insight that would help me figure out how to make things better an easier.

After my transplant while I was insulin free, things were simple.  The islets did all the work and no mathematic or strategic calculating was necessary.  It was when I needed to go back to using some insulin that I realized how much I actually knew about controlling my BGs.  And more importantly, how the math can work. If 0.8units is what should control my post breakfast blood sugar, it will.  I can see the benefits of exercise and I can tell how long my walk should be to replace part of my insulin needs.  While I was going through my illnesses this winter, I could adjust my insulin upwards to cover.  And after my immunosuppression reduction while my blood sugars were coming back down, I could reprogram my pump to meet these changes as well.

There are still some challenges and a few surprises, but they are explainable and easily remedied.  Frustration never enters the picture.

So, my accomplishment is in keeping myself healthy enough to qualify for this transplant   while my predicament was anything but simple.  What a payoff for some hard work.

Diabetes Memories

The topic for today in the Diabetes Blog Week is Memories.

My memory is of the day that I went completely off of insulin after my transplant.  It had taken 59 days to get to this point since my transplant, but I never had a doubt that I would make it "all the way".  I had been watching my insulin need slowly decreasing as my new islets were gaining their strength this whole time.

The day that I chose was destined to be a fun day anyway.  We were going to Put -in Bay with some friends of ours to spend the weekend.  I knew that I would be getting plenty of exercise and would be able to be focused on how I was feeling.  So, that morning I didn't take my injection of Lantus which at that point was down to only 2 units anyway.  It was both exhilarating and scary at the same time.  I felt free, healthy, and extremely lucky.  I held my breath every time I checked my blood sugar.  It just didn't seem real.  Its been almost five years since I had my transplant now, and sometimes it still feels like a dream.

The day went very well.  My BGs were normal and my energy was amazing.  It was a day that I enjoy thinking back to and am sure that I will never forget.

My wish is that the rest of my diabetes community will have this experience and soon.

Its the 4th annual D-blob week.  I like this idea because it brings so many interesting people together and I enjoy seeing the various viewpoints on the topics.

I'm beginning with one of the wild card topics.  The topic is "What is the ideal diabetes service animal?"  The idea of course is to be creative as far as which animal to choose.  Well, I'm a bit prejudiced on this.  I can't imagine a better animal than a Diabetes Alert Dog.  But, I could add a few characteristics that I think might add to its abilities.

The qualities that make dogs the perfect service animal, also can lead to some of the difficult issues of having a service animal.  They are so cute and cuddly that some people seem to have no choice but to come over and pet and love your dog.  Usually, this is fun and flattering, but sometimes it is an interruption in what you are trying to accomplish.  While I had Senator on vacation in Daytona Beach last year, this was a constant issue.  He was of course the only dog within this very large complex and many people acted like they had never seen a dog before.  Seeing Senator also made them extremely homesick for their own dog.  I can't tell you how many cell phone pictures of dogs were held up for me to see.

So, my perfect service animal would still be a dog.  You just can't beat their intelligence, loyalty, and companionship.  But, they would come with an invisibility cloak for those times when you wish they didn't stick out so much.  And they wouldn't shed.  Or want to go out in the rain.

This picture of Senator is my best argument for why a dog is the best diabetes service animal.  Who could resist this?

He is doing well with his training.  He alerts to my high or low blood sugars and is learning to distinguish between them.  It is an amazing thing to see.

Rx: Cross your fingers and knock on wood

The title reflects the recommended treatments by two of my doctors.  I have to say right away, that I absolutely love, trust and respect these two doctors and I thought that it was hilarious that they came up with similar ideas.

Because of this BK viral infection that I've been fighting for several months, my immunosuppression has been dramatically decreased to almost nothing.  A few weeks ago, I noticed that my fasting BGs had been creeping upward into the lower 120s which is high for me.  I've been trying to keep things very consistent so that I would notice quickly if something was going wrong.  I emailed this worry to Dr Bellin who is monitoring my progress.  I was trying not to ask "will you increase my immunosuppression if this continues?".  Her reply was that we should keep our fingers crossed for my islets through this.  She was trying not to say "no more immunosuppression".  We both know that we are more worried about my kidney function at the moment, and the lowered immunosuppression is our best hope.

Then yesterday, I saw my endocrinologist.  We were going over my recent lab results and medications. I said something to the effect of "Aren't we amazed that I'm not rejecting?".  His instant response was a big smile and to knock on the tabletop.  We both laughed and said how lucky I have been and hope that this will continue.  I didn't think about the dual responses of my doctors until I was driving home.  They are both happy and pleased with me and for me that things are going so well.  And for now, both the present and the future seem bright.  On this journey into the unknown, thats a nice place to be.

My recent lab results had some good and bad results.
My BK viral titers keep hovering between detectable and undetectable.

Date            Serum BK                                     Urine BK                                       Creatinine
4/10/13     Detectable, not quantifiable      Detectable, not quantifiable                    1.7                     
4/24/13        Undetectable                                     3.3                                               1.8

My A1c was 6.9 which was a dramatic increase from the last one which was 5.9.  I was shocked by this.  I feel that my BGs have been better, not worse in the last three months. This was repeated at the endo's office and was 6.5 which is a little better.

I am starting on Symlin which is a drug like insulin that might try to keep my morning post-prandials a bit lower.  Its the only place that I can see that I am going too high.  Senator is actually the one that pointed this out to me :)  I'll start at 15mg which is the lowest dose possible.

My C-peptide was 0.39 which is about the same as it was in March (0.37).
My CBC was all normal and included a Hemoglobin of 13.7 which is normal (12-16).
Cholesterol was 182.
Prograf less than 2.0  which was of course very abnormally low



The picture is of Gary and Cruise.  We are also keeping our fingers crossed and knocking on wood for Cruise's future.  He leaves us on Monday to begin his final training as a service dog.  We know he will be a  successful and beloved helping paw to someone special.

One less -ologist is a good thing

I had an appointment with my Hematologist yesterday.  She was called into the picture during my hospital stay when I was being treated for anemia.  My anemia was most likely a complication of my immunosuppression, but it  was important to find out the extent and the exact cause.  My first meeting with her was kind of a blur because it was a complete surprise and I was so sick and worried about the other problems I was having, so I wasn't too concerned about it.

I had three more visits after I was released and they were much more memorable.  She was seeing teardrop cells and acanthocytes in my CBC differential.  This is where my blood is put on a slide and the types and percentages of the cells are recorded.  These two types are not seen in a normal differential, so it was a concern.  She wanted to do a bone marrow on me which is a very intrusive and painful procedure.  At that point, I was just too overwhelmed with all of the other things that were happening with me and asked to postpone it.  This happened at the next visit too.  I asked for one more postponement.

My visit yesterday was much better.  She walked into the room and said that I should keep doing whatever I have been doing.  There were only a rare amount of the teardrop and acanthrocytes.  She says the bone marrow option is no longer necessary.  Yay for that.  And, no more appointment unless something else leads me that way.

So, now I'm down to just an endocrinologist, nephrologist, opthamologist, gynocologist, infection control Dr, and of course my transplant Drs.  Its overwhelming, but I can't complain about the care that I receive from all of these brilliant doctors on this amazing journey.

My latest BK viral tests showed that both the blood and the urine levels are detectable but not quantifiable.  This seems to be a good thing.  I'm one step away from being rid of this virus.  Maybe the next test will show that it's really gone.

Other good lab results included a creatinine of 1.7, a potassium of 4.5, and a hemoglobin of 12.5.

Yesterday, I had the opportunity to sit in the symbolic green chair for Donate Life Ohio which is our organ transplant organization.  Its a yearly event where they have an organ recipient or a family member of a donor sit in the chair for 24hrs.  The local media gives it a lot of publicity and hopefully encourages more people to sign up to be donors.