Endo visit with better labs and my incredible Golden

I saw my endocrinologist recently and feel much better about how things are going.  I've been worried about my recent rash of out of range lab results and was expecting to have a very serious and possibly discouraging visit with him this time.

The visit began well with my blood pressure at 170/80.  This is good considering that my lisinopril had been reduced since my previous visit.  My A1c was 6.0.  This is up from 5.8 three months ago, but is still quite good.  My C-peptide was 0.53 which is up slightly from the last visit.  Normal C-peptide is 0.9-6.9.  So I'm below normal, but still have some.  It still amazes me at how much a small amount can help make life so much easier.

Next we discussed the chemistry values that have had me so concerned.  The good news is that my potassium is down to 4.7.  Normal is 3.5-5.0, so I am back in range.  I was at 6.0 as of the last testing.  I've really been struggling with the low potassium diet, so I'm glad to see it back to normal.  Dr. G. agreed that it was probably a result of the lisinopril.  The bad news was that my creatinine was up to 1.6 which is the highest its been.  That prompted a call to the nephrologist.  She wasn't overly concerned and has ordered another draw to see if it will come down.

I asked Dr. G. if all of this was leading to  a brick wall where I was going to have to choose between my islets and my kidneys.  He said no, that he thought I would probably come back to normal.  I was surprised and very relieved to hear this.  He's more pessimistic than me (which is a good thing), so this has really put me at ease.

My cholesterol was at 226 with an LDL of 117.  So now I am taking 20mg of Lovastatin instead of 10mg/day.  My HDL was at 95 which probably accounts for most of the high cholesterol.


Senator has been progressing nicely with his DAD training.  He now alerts me to my lows which is really exciting.  I don't have too many of them, and they really aren't dangerous lows, so I can really enjoy the process.  I'm just now starting to introduce him to the high BG scent.  Hopefully, that will go just as smoothly.  The highs will really be of more use to me at this point.  The high BGs are stressful to my new islets.

Chemistry troubles

I had a great time at Government day last month, but I must have really worn myself out.  I guess I shouldn't have tried keeping up with my younger friends.  You know who your are Jenn.  My exhaustion seems to be the first in a set of dominoes since then.

It began with a headache.  I get headaches occasionally, especially when I'm tired, but this one seemed worse somehow.  I was feeling some kind of tension.  Something made me decide to test my blood pressure.  Sure enough, it was quite high.  I did it several times and it averaged about 195/90 which is really high for me or anyone. I went to the doctor the next day and she increased my lisinopril from 10 to 20mg/day.  By the following day, my headache was gone and I was feeling better.

A few days later, I noticed that I had a sore throat and felt tired.  I thought I must have caught something on the plane on the way back from DC.  I tried a throat culture, but it was negative.  After a few more days, I was feeling better, but still had the sore throat.

About a week later, it was time for my monthly labs to be drawn.  Each month, I have a CBC, creatinine, glucose and my drug levels tested.  The next day, I received a call at home from my endo telling me that my creatinine was up to 1.5.  The last draw had been 1.2 which was considered high.  He wanted me to contact my nephrologist and see what she thought about this.  She ordered more lab work to be drawn.  The results of this testing was that my creatinine was down to 1.3, but now my potassium is 5.9 which is really high.  This generated another call at home, this time from the nephrologist saying that I need to take a potassium lowering drug immediately.  So, I did that.  And, I'm supposed to be following a low potassium diet.  I googled that and about cried.  It runs extremely counter to my present diet which is low carb, low fat, low salt.  It seems that now there is finally nothing that I can eat without cheating on one of these diets.  Pretty frustrating.  I must have looked pretty sad, because these beautiful flowers appeared on my dining room table from my nice husband.  They helped.

And time for thinking things through has helped.  I still feel fine.  Other than this strange sore throat, I don't have any symptoms.  I'm being drawn again tomorrow and I'm hoping that my potassium will be on the downswing.  I'm also hoping that my nephrologist might revisit the increase in my lisinopril.  I'm guessing that that might be the real culprit with this last mess.

I've also had the very exciting and therapeutic experience of writing down my whole islet cell story to be featured in Diabetes Daily.  Its served to remind me of how lucky I really am.  I expected that there would be times like this and there has been, but they have all seemed temporary and/or treatable.

My blood sugars which always react to any stress on my body or life have come back to baseline.  So, things are all right now.

And, Senator and I have been making some real progress in his diabetes alert training!

JDRF Government Day - meetings on the Hill

After another delicious breakfast (they fed us well), it was time for the research update.  I had been looking forward to this session for obvious reasons and it was indeed very interesting. The research was divided into three sections.
These are the topics that are currently funded by the JDRF.

TREAT

• This included the use of faster insulins and glucose responsive insulin which would only be activated in the presence of glucose.
• The Artificial pancreas project which is the focus of the current Promise campaign.  The FDA has recently released a guidance that will help get it to approval.

PREVENT

• This includes the TEDDY study (The Environmental Determinants of Diabetes in the Young)
• Genetic and environmental triggers of diabetes are being isolated and studied.
• Trial net is the study that tests the family members of Type 1s to see if they possess antigens known to be associataed with diabetes.
• People who have just been diagnosed are treated with immunosuppression therapy in hopes of delaying the onset of severe Type 1 diabetes.

CURE

• Islet cell transplantation is currently funded by the SDP (90%).  It is hoped that FDA approval will help more patients have this option.
• Micro and macro-encapsulation of islet cells is the next step.
• Regeneration of beta cells is another direction.  Progenitor cells are a hope as is the reprogramming of alpha cells to become beta cells.

After lunch we boarded buses and headed for Washington DC.  Today we met with our state senators.  All of the people from Ohio attended.

Our first meeting was in the office of Sherrod Brown(D).  We met with one of his aides who seemed very interested in what we had to say.  It was very similar to a Promise meeting.  We all told our personal stories and then made sure that we asked for the support with specific items.  We asked each legislator to sign a letter of support for the Special Diabetes Program, to support the artificial pancreas project, to vote for financial support of the NIH and the FDA, and to join the diabetes caucus.  It was emotional hearing and telling our stories.  And the JDRF had us very well prepared with our talking points and our literature.  I felt that this meeting went very well.

Our next meeting was in the office of Rob Portman(R).  Again, we met with an aide.  She was polite, but not as interested.  When we asked for financial support she said that it is the Senator's policy not to support one disease over the others.  "It is too much like playing God".  That's hard to argue against and we could tell it wouldn't get us far.

We took a bus back to the hotel and arrived just in time to get ready for dinner.  We were served a nice dinner and enjoyed a nice program afterwards.  Jeffrey Brewer, president and CEO of the JDRF was the speaker and he gave a nice and encouraging talk.  Various awards were presented to some of the advocates.  I didn't know them, but judging by the smiling applause, they were deserving.  It was a very nice evening.

Tuesday morning, we had breakfast, packed up, and again headed for Washington DC.  Today we would be visiting with our Representatives.  We were able to meet with Rep. Latta(R) in person.  He was as friendly and interested as he was in our Promise meeting last fall.  For Reps. Kaptur(D) and Jordan(R), we met with their aides. Both were eager to hear our stories and were attentive as to what we were asking.  Rep. Kaptur had already performed all of the things that we were asking, so it was just a nice time to visit and talk about the importance of our mission with her aide.

After my meetings, I walked around for awhile just taking in the sights and then suddenly it was time to get to the airport and come back home.  The trip was pleasant and I enjoyed just sitting quietly and walking around the airport thinking back on the previous four days of adventure.  I met so many interesting people that I hope to remain in contact with and learned so much about advocacy.

JDRF Government Day - training days

I just returned from Government Day in Washington DC.  It consisted of four days, two days of training and two days of meeting with legislators.  It was full of fun, inspiration, socializing with interesting people, the excitement of meeting with people who can make a difference.

Saturday

Arlington cemetery

I left early in the morning and arrived at the hotel in DC at about noon.  I checked into both the hotel and the conference right away.  There were lots of people there, but none that I knew.  I had a one on one meeting with Jill G., who is the regional co chair of the Promise campaign.  We had emailed and spoken on the phone numerous times, but had never actually met.  She was very nice and got me off to a good start.  She also helped me meet some others advocates from Ohio who I would be spending some time with during the conference.  While I was sitting in the lobby reading over the handouts I had received, Hasan Shaw, the JDRF grassroots advocacy manager asked if he could do a video with me for the website.  He was looking for someone who was here for their first time and I was available.  Here it is.  I also slipped away for a walk around the hotel. It turns out we were very  near Arlington cemetery.


The Ohio people all went out for dinner together.  We took a bus into the city and had a nice dinner at an Italian restaurant.  It was fun getting to know each other and sharing our stories.  Afterwards, we went to the hotel bar and met some of the other people.  Everyone was so interesting and of course, we all had a lot in common.

Sunday
Breakfast was at 7:30, so it was a short night.  I got some breakfast and coffee and carried it into a big meeting room.  I didn't see any familiar faces, so sat next to the person that I had walked in with.  It turned out to be Karen from Bitter~Sweet blog, one of the very people who I was hoping to meet.  We had a nice time talking about our blogging experience.  She is just as nice in person as she seems on her blog.  


Then came the introductions.  Each person introduced themselves and told their own diabetes stories.  Each story was unique and interesting.  There were several families that had two diabetic children, and one with three.  Probably the one that got to me the most was a mother who says that she holds her breath each morning when she goes in to wake up her son.  She always begins the day by checking that he is breathing.  All of the parents spoke of setting alarms to check blood sugars multiple times each night. Several of the type 1s have been diabetic for many, many years.  But in all of the stories, no one was really complaining or asking for sympathy, just telling the specifics.  Very typical and illustrates one of the reasons that most people don't know a lot about the more difficult challenges of living with diabetes.


Next came the information that we needed to prepare for our visits to the legislators on "the hill".  We talked of our goals and some of the issues that we would be explaining to our congress people as well as what we would be asking of them.  We would be asking for renewed funding for the Special Diabetes Program.  This is a program that funds research funding through the NIH for projects involved with things like genetics, environmental triggers, complications, glucose control, and several other issues (like my transplant!).  We also talked about the artificial pancreas project and asking for funding for the NIH and the FDA.  We would also be asking each legislator to please join the diabetes caucus.


An update on the Promise campaign was encouraging.  We are getting close to our goal of 432 meetings.  I have my last one on Tuesday.

We were then given the choice of which sessions we would like to attend.  I chose one on building leadership and one on what to expect at our meetings with congress.  Both were very helpful.

All of the Ohio people then went out for dinner.  We ate at Chef Geoffs and had a great time together.  Afterwards, we walked around the area and ended at the White House.  It was a fun evening.

Preparing for JDRF Government Day

I love it when my online world and my real world collide.  It really has this time.  I am being allowed the opportunity to go to Washington DC to advocate for funding for the cure of diabetes on behalf of the JDRF.  What an exciting way to do something so important for a cause that I believe in so strongly.

In the meantime, I have a lot to learn.  The goal of Government Day is to meet with and convince our legislators to vote for issues that will fund research for diabetes.  I am assigned three local Representatives.  They are the same three that I have either had or are in the process of scheduling Promise meetings with.  Currently I have one meeting with Rep. Jordan set up, a meeting with an assistant of Rep. Kaptur and am waiting to hear back from Rep. Latta's office.  I'm learning a lot about the art of scheduling.

I did an on line training session to help prepare me for what to do when we all get there.  The logistics of getting around with no car will be different.  I'm planning on doing as much walking as I can.

My blood sugars have been quite good lately.  I attribute it in part to having two dogs to walk and care for.  We now have a second dog, Cruise that Gary is fostering and training to become a service dog.  Its a lot of work, but fun to watch the dogs interact, and good exercise for me.  Gary is also participating in the training classes so that we can help each other with both dogs.  Senator is doing well with his training to become diabetes alert dog.  I've created a second blog to document my progress with him here.