Friday, December 24, 2010

Merry Christmas 2010

I had a scare with my Prograf level this week.  I get my Prograf and Rapamune levels checked monthly to make sure I am within range.  Prograf should be between 4 and 6.  Rapamune should be between 8 and 15ng/ml.

My prograf came back at <2 which is really low.  Janet called to ask if I could think of any reason.  I hadn't missed a dose.  I hadn't eaten any grapefruit.  No digestive problems.  So my dose was increased from 8mg to 12mg/day.  I was drawn again the next day to see what level that would achieve.  It came back today at 10.3 which is too high.  So now my dose is 10mg/day.   Dr. Bellin thinks the lab first level might have been an error.  It does look that way to me.  My Prograf levels have been fairly stable until now.  That would be better than the alternative of really having my level be that low and have to worry that my islets were not protected.  As a Medical Technologist, a lab worker myself, it does remind me how important each lab value is to the person who is awaiting the result.

This is the Christmas card we sent this year.  Gary is a master of photoshop.

Thursday, December 16, 2010

Islet update

I seem to be in a stable place right now.  I'm still taking about 8 units of insulin per day.  The best strategy seems to be to take 6 units of Lantus at supper time and 1 unit of Novolog before breakfast and before lunch.  With the change in the seasons, I have been getting my exercise in after supper instead of immediately before.  I miss my walk, but this way, I can skip my before supper unit of Novolog.

This seems to keep me steady.  I get a few highs and even some lows.  Both seem to be direct effects of exercise or lack thereof.  I can tell when my body is stressed as well.  I had a headache last week that caused an increase.  Emotions have the same effect.  Its surprising how quickly things can get out of range.  I really have to keep my hands on the reins.

I saw my opthomologist last week.  Still no signs of any retinopathy.
I have been lucky with staying healthy too.  I've been around some coughing and sneezing and worse people without catching anything.

I have been sleeping much better lately.  My insomnia stopped abruptly about the time that I started taking insulin.  I rarely have to get up and read anymore to get myself back to sleep.

On the research front, a new treatment that invovles taking stem cells from testicular cells and converting them into insulin producing cells has been making the news. It may be that we have the power to heal ourselves. It sounds very encouraging and it is also noted that for females, the oocyte should be able to accomplish the same thing.

Also, Living Cell Technologies has just been granted the right to administer its Diabecell product in Russia.  This is the encapsulated pig islet cells.  The procedure costs $150,000 now, but should decrease as more people opt to try this.  This is important because it will increase the number of people who can try it and therefore increase our knowledge about the treatment in general.

Other good news is that the Special Diabetes Program has passed in both the House and the Senate.  This is good news because it is a pledge of $150 million dollars for two years.  This provides funding for many cure based research projects.  I'm hoping it will open the door for many more clinical trials.

These are my kids on the Pacific Ocean.  Becky's birthday present was plane tickets to go see Gary and Cassie in CA.

Below is an islet/stem cell that I thought was just beautiful.

Wednesday, December 8, 2010

The naked dream of diabetics?

I have had this dream many times.  One day several years ago, I think I made some sense of it.  Here's the dream:

I am somewhere in a public place.  I'm all or partially naked.  I have to get from where I am to somewhere else.  I believe that I can make this journey with no one realizing that anything is out of the ordinary.  I just have to be confident and behave as if everything is just fine.  That's the dream.  I always pull it off.  No one ever says anything or regards me as if anything is wrong at all.  I'm very stressed, but I can cover that with words and actions.  The need for isolation is intense.

Sound familiar?  If you are a diabetic, this is what it feels like to suddenly have a low.  You know that you are vulnerable and exposed, but no one else seems to.  You can have a reflexive conversation, one in which you are able to parrot a few words back.  You can answer simple questions.  You can walk. You just have to really concentrate about what you are trying to do.  The place that you are going is to where you know there is food.

I haven't had this dream in the nearly two and a half years since my islet cell transplant.  Before that, I probably had it about a dozen times in the last 5 years.

Now that I am back using some insulin, I have decided to do things a little differently this second time around.  I'm attempting to be more open about how I am feeling.  I even had a long talk with my supervisor at work.  We developed a plan of action for if I become low at work and have to stop and take some time to get back to normal.  There will probably be other adjustments that I will make in my behavior like this.  I'm going to be easier on myself.  This time, I know its not just my inability to dose my insulin adequately or just the aging process.  It really is hard to get it right every time.

I had the dream where I was naked a few nights ago.  I asked for help and someone gave me some clothes with no judgement or hesitation.