Thursday, May 30, 2013

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.

Saturday, May 18, 2013

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?

Friday, May 17, 2013

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.

Wednesday, May 15, 2013

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.

Tuesday, May 14, 2013

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.

Saturday, May 11, 2013

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.