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.  :)

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.

Down and Out, playing mind games and feeling fine

My A1c is down to 5.9 and the BK virus is out of my blood.  I'm using positive thoughts to keep my islets safe.  And it all seems to be coming together.

My last tests for the BK virus show that it has been cleared in my blood  Finally.  Its not determined whether this is due to the immunoglobulin infusions I have been receiving or the dramatic lowering of my immunosuppression.  The virus is still in my urine, but is decreasing slightly.  It went from 5.4 to 5.2 log units.  I'll be having these tests done every week for a month along with a creatinine level to monitor my progress with this.  My creatinine is still at 1.8 which is stable, but still too high.

I saw my endo this week.  He was as pleased with my lower A1c as I was.  I asked him what he thought of all this, considering the fact that my islets are at such risk of rejection and he said he thinks its the power of positive thinking.  I do too and I'm going with that.  I asked about going back to injections since I am on such a low dosage of insulin, but he says not yet.

I realize that I'm in a precarious situation, but am enjoying it for as long as I can.  If the virus isn't cleared from my urine soon, I might have to lower my Prograf even more.  I'm only taking 2.5mg/day now, so that might mean going off of it altogether.  But, I have to get my kidneys into a better state of health.  I can tell that they are not back to normal because I still go so much more at night than I do in the daytime.  Its strange and impractical.

As illustrated by my A1c, my BGs have been quite good.  I'm at about 10 units of insulin /day.  I'm enjoying this process of seeing my insulin needs decrease.  They haven't changed much in the last few day, so I may have reached the endpoint.  I might see another small drop once this weather improves.  I'm not walking in the freezing cold temperatures this year.  I'm too afraid of getting sick at this point.  I'm enjoying this new state of health too much to risk any step backward.

Senator has been getting some good practice with lows while my BGs are on this downward trend.  He's doing very well with his training.

My Strong Islets!.....??

I feel a little bit as if I'm in some kind of purgatory.  In the effort to fend off this BK virus, I'm taking only a small fraction of my normal dose of immunosuppressants.  I was taking 12mg of Prograf/day and 50 mg of Imuran.  Now, I take 2.5mg of Prograf and no Imuran.  It is a gamble to be at such a low dose, but its a necessary step in treating this virus.  The antiviral didn't work and I'm gathering that the immunoglobulin treatment doesn't have great stats of success.

It is and was a very scary thing to have to do.  At first, it really felt close to having to give up on my islets.  The good news (for now) is that they seem to be holding on.  In fact they are awesome.  My BGs are rarely over 90 fasting or 120 for post-prandials.  My insulin requirements have been on a steady decline at the same time.  I'm now using between 11 and 12 units/day.  The biggest difference seems to be at mealtime.  I rarely bolus over 1.0 units and usually only 0.5 units.

My viral titer has been decreasing as well.  It started at 5.5.  It decreased only to a disappointing 5.0 after two weeks of the antiviral drug.  After 4 weeks, it was down to 4.4 and last week it was 3.9.  The titer is measured in log units, so the decrease is more than these numbers would indicate.  But, the goal is to get it down to 0, so there is still a ways to go.  I was drawn earlier this week and am anticipating that result.

I've returned to some walking and some socializing. I've even gained some weight back.  So life is good again.  I feel that I will continue to get better.  The question is what stage of me am I returning to?  The healthy but diabetic one, the transplant recipient with strong again islets, or somewhere in between?  I'm a true experiment.  And I like that.

Treating the BK virus with lowered immunosuppression

I just had my second week of immunoglobulin treatment for the BK viral infection.  The infusion is easy, just takes more time.  This virus has felt like a full time job lately.  I'm anxious to be done with that aspect of it.

Dr. Bellin, after discussing my situation with a Nephologist and ID doctor in Minnesota has decided to drastically decrease my immunosuppression.  Before the virus was discovered, I was taking 50mg of Imuran twice a day, and 6mg of Prograf twice a day.  Now, I'm not taking any Imuran at all and I'm only taking 1.5mg of Prograf twice a day.  It was a little shocking when I was told this, but I understand and agree with this decision.  My kidneys are in trouble.  And they must be put ahead of my islets.

Its been almost a week since I started this reduction.  The very interesting thing is that my blood sugars have been very good.  Lower than they have been in a long time.  And my insulin requirements are decreasing at the same time.  I've dropped from about 18 units/day to 16 units/day.  And my appetite has dramatically increased.  I feel hungry much more often and am eating more at each meal.  I'm probably gaining weight.

I'm not sure what to make of this.  Its certainly not what I had expected.  My theory is that without the immunsuppression, my body is under less stress.  Less stress has always led to better blood sugars.  I just have to hope that my islets are safe throughout all of this.

My last labs were good.  I was very worried because I had a low hemoglobin level in the previous draw.  I was down to 9.5.  Normal is about 12-16, so this is not good.  I was warned by the pharmacist that Imuran can lead to low hemoglobin and I was worried that I might have to deal with that again.

This last hemoglobin result was 11.2 which is much better and going in the right direction.
My lipid panel was all normal.
My creatinine was 1.8 which is still too high.
My A1c was 6.8 which is higher than I like, but understandable considering all that I have been through in these last few months.  The next one WILL be lower.

at the San Diego zoo

My cold is about gone now.  I'm feeling pretty good.  We are experiencing some really cold weather at the moment, but as soon as it is past, I'm hoping to start walking again.