Thursday, March 21, 2013

JDRF Government Day 2013

I have just returned home after my second experience with JDRF Government Day.  It was again a very informational, social, and fun few days.

view from my hotel room
with Jeffrey Brewer and Angel
The purpose of Government day is to educate the JDRF advocates on the current legislation that involves diabetes topics and then to go to the hill and attempt to convince the legislators of the importance of these issues.  The JDRF was formed in 1970 by parents who could not stand the thought of their children living with this disease for their whole lives and decided to try to raise the money necessary to bring the cure.  Unfortunately, the cure has always been perceived to be 5 years away and there are some disappointments with this.  But, no quitters and the group is a very driven commodity.  More recently, the proportion of Type 1s to parents of Type 1s has increased.  Probably mostly because now the Type 1s have become adults and partly because Type 1 diabetes is more in the open and more people like me have joined late in the game.

This year was a little different for me because I had a companion.  I nominated one of my trusty Promise meeting delegates to go with me and she was accepted.  It was fun having Angel with me and I think she enjoyed it as much as I did.

We tavelled to the Detroit airport in snow and slush and arrived in Washington DC to warmth and sunshine.  It was a good omen and we began our visit with a walk around Arlington cemetery.  From then on it was a very nonstop weekend.

The first thing I did was to find and meet my transplant twin.  Julie and I both celebrate July 21st as our transplant anniversary.  It was a thrill to meet her and when our story was discovered, we were interviewed by the JDRF media team.  I'll post it here when I get a copy.

We had a meeting with Jill, the regional JDRF advocacy leader to learn what was happening both here and locally.  Then it was time for dinner and introductions to the DC staff.  

Dinner out with the regional group
with Camille between meetings
my transplant twin
The following morning, we learned more about the Special Diabetes Program which was renewed at the end of 2012, but only for a year.  We would need to ask for this important program to be continued again.  It provided $150 million/year for cure research and its continuation is important so the the research can continue with no gaps.  The Promise to Remember Me campaign will begin again in August as well.  

Since I am an new ATC (Advocacy Team Chair), I went to some sessions with information on how to do this successfully.  I need to form a team to help me with this.  Our main focus is recruiting more people to become JDRF advocates who will approach their Representatives when there are important issues at stake.  I attended a session on how to find and utilize these advocates and one that will help me maneuver through the website.  Angel is set to be my Recruitment manager and I'll try to find one or two more interested people for other roles.

Monday morning began with a talk by Jeffrey Brewer who is the CEO of the JDRF.  I've seen him before and he always does a nice job of telling about which research projects we are working on and why its important to our cause.  Since I have met and listened to the plight of so many parents of Type 1s, I am more agreeable to the necessity of the Artificial Pancreas Project.  

Then, there was a Power-Point discussion between Jeffrey Brewer and the head of the research.  It was just awesome.  Last year, I was disappointed because some of the statistics on islet cell transplants were off and negative.  This year, they had them right  and mentioned that 50% of patients made it to 5 years with no insulin.  There was also interesting work being done with smart insulin, encapsulation, genetic studies, regeneration, and TrialNet.  All of these directions towards the cure were presented as being helpful and hopeful and not extremely far away.  It was a very positive and motivational morning and I think we were all in the right state of mind to go and speak with our Representatives.

Our senate meetings went well.  Neither Senators Brown or Porter could be there, but we met with their aides who will deliver our message and reading materials to them.  Sen. Porter's aide turned out to be a physician who knew about islet cell transplants as well as the son of a Type 1 father.  So, it was nice talking to someone who knew and understood our plight and goals.

That evening we went out with our regional group to dinner.  It was a nice meal and a very interesting group.  We had a good time.

The next morning, we packed up and headed back to the Hill.  This time to speak with our local Reps.  We did get to meet Congressman Jordan, but the other 2 were meetings with aides.  They seemed receptive and we can only hope that they will pass on our messages as efficiently as we would have.  If not, we will make up for it at the Promise meetings this summer.  :)

Wednesday, March 6, 2013

Turn the Page

I saw Bob Seger over the weekend, and he was fantastic!  He has always been my favorite and seeing him perform in person is really a thrill.

The title happens to be my favorite song of his and its how I feel about what is going on with my health story these days.  I feel like I am constantly waiting to turn the page to see what happens next.

I'm having tests for the presence of the BK virus weekly for awhile.  It seems to be going in the right direction.

           Serum BK            Urine BK      Creatinine
2/15     undetected             5.2                 1.8

2/22     less than 2.6          4.5                 1.8

3/1                                   4.2                1.9

I'm concerned that my creatinine has increased, but haven't heard that I need to decrease my immunosuppression.

I also had my C-peptide tested.  My blood sugars have been surprisingly good and both doctors ordered C-peptide to check on my islet function.  They have showed an increase.

                             Fasting                  Post-prandial
July                       0.14                       1.59

September              0.87                       1.49

March                    0.37                       2.17

normal C-peptide is 0.9 to 6.9

This is an interesting reflexion of what I am seeing on my pump statistics.  I still need some basal insulin to keep me from going too high.  But, I need much less bolus insulin.  I'm getting some help from my islets in controlling the increase seen after I eat.  I'm using about 9.5 units of insulin/day now.  83% is basal and 17% is from boluses.