Diabetes Symposium in Minneapolis

The Diabetes Symposium is being held in Minneapolis this year.  It will be very similar to the Transplant Summit that was held in Bethesda last November.  There will be eight islet cell transplant recipients present to tell their stories.  Dr. Hering will speak about islet cell transplants and Dr. Firpo will speak about her stem cell research for diabetes.  It will again be a great place to learn more about what is happening in diabetes research research for the cure.  I'm looking forward to seeing all of the Minneapolis SDI friends that I have made in the last three years.  It will also be fun to meet some more recipients in person.  I'll write all about it afterwards.

On the homefront, I just heard back from the nurse at the Nephrologist's office.  She told me that my labs came back ok.  I have a small amount of protein in my urine and my sodium is slightly lower than normal, but everything else looks fine.  I'm scheduled to have a renal ultrasound on Monday and I will have some more lab tests run before my appt in November to compare with these.  So, I won't be worrying about this.

I picked up my new foster Assistance dog on Thursday.  His name is Senator and he seems like a very nice dog.  He looks a lot like Dolly which was hard at first, but now we're getting used to having a new dog.  He has a different personality than Dolly.  He's not so afraid of things and not so inclined to jump on people.  He does have his own set of issues however.  He can be a barker at times which is totally unacceptable for an Assistance dog.  He barks with a high pitch bark when he wants Callie to play or something from us.  That is acceptable for now.  However, he also barks at things outside with a lower pitched bark.  This is not acceptable.  We're working on this and he might be getting a bark collar which sprays citronella when he barks.  Its actually kind of interesting to have a new set of problems.  I get to learn a wider cross section of training.  Part of getting him to quit barking might involve training him to bark on command and then training him to stop.  Cool stuff.  I didn't realize how much I would enjoy the learning aspect of training a dog.  Its a science in itself.

The Senator and Callie are already buddies.  And Callie is still the boss.

JDRF Promise meeting

Angel, Lara, Lori, Me, Rep. Latta

I had a JDRF Promise to Remember Me meeting yesterday with my State Representative Bob Latta.  It was again a very pleasant and rewarding experience.  I was very pleased with his response to our stories.  He asked some very insightful questions and seemed truly interested in what we had to say.

I had three people with me for the meeting.  Lana spoke about her experience with having a daughter who is now 4, but was diagnosed with Type 1 at 2 years old.  Angel and her Mom, Lori told of her experiences growing up with diabetes.  She was diagnosed at age 3.

Lara spoke first and told of having to be available constantly to monitor her daughter Addison's blood sugars.  It was difficult to work or to get away with her husband or to get a good night's sleep.  She told about how she could tell when Addison was low because her activity level decreased dramatically.  It was an emotional story about a situation that seems so unfair on so many levels.

Angel is a college student and had organized her thoughts on paper.  She started reading from her notes about difficult aspects of her life with diabetes.  Rep. Latta interrupted her with questions that brought out some very interesting stories about how hard she would try to keep her blood sugars under control, but how impossible it seemed to be.  She talked about her dismay with her high A1c and tried to explain what that was and what the implications are of having it be too high.  She spoke about how hard she tried to lead a normal life, but how diabetes makes that difficult.  She also spoke of how hard it is to tell people about her diabetes.  As a college student, she can't rely so much on her parents and needs to rely more on roommates and friends.  That is difficult at her age when independence is everything.  Rep Latta asked her several questions throughout her talk and I'm not sure she ever made it back to her prepared speech.  But that, I think is a good thing in that it brought out some interesting situations.  She was very compelling as was Lara.

I knew we were running out of time.  We were supposed to hold our meeting to 15 to 20 minutes.  So I only mentioned that I used to be just like Addison and Angel.  Until my transplant.  Rep Latta was very interested in the transplant process and how the FDA would be involved in getting this approved for all diabetics.  We talked about the surgery and the results.  I explained how I had two years with no insulin, but that most people get at least 5 years.  That the research was indeed moving forward.  I mentioned the article about the cost-effectiveness of islet cell transplants vs. insulin therapy.   He told us that he is on a Healthcare committee and comes across questions like this.  He asked for some more information so that he can better understand it and be prepared to discuss this if it comes up.  This, of course, got me very excited to tell more about it.  I also promised to send more information to his office. He was also interested in the insulin pump and continuous glucose monitor.  I explained how they work, some of the mechanics, and how they are attached to the patient.

Between my interesting partners and Rep. Latta's involvement in our discussions, it was a very pleasant and successful meeting.

Gathering my thoughts

I seem to be right in the middle of so many projects right now.  Some diabetes related and some not.  Writing them down can be therapeutic and help me set and see some priorities.

ADVOCACY
I am trying to organize two Promise to Remember Me meetings with Ohio congressmen.
I was able to get a meeting date for my own local representative, Bob Latta.  It will be on Tuesday afternoon.  I have a college student and hopefully a younger child attending with me.  We will all tell our own diabetes stories and I will leave an information packet.

I'm also trying to get a Promise meeting with Speaker Boehner who is from the Dayton area.  After several calls and emails, I still don't have a meeting set.  I'll just have to be persistent.

I'm busy getting my JDRF walk organized.  The email system of communication is convenient, but too easy to ignore.  I think I have a day of making phone calls ahead of me in gathering my troops.  That's in 3 weeks.

I will be going back to  Minnesota! for a Transplant Symposium.  Dr. Hering told me about it at my visit last month.  I've been waiting to see it in print before I start preparing and buying a plane ticket.  I finally have seen a brochure, so am starting to think about what I want to say this time.  Needless to say, I am very excited.

HEALTH
I have my appointment with the nephrologist right after my meeting with Congressman Latta on Tuesday.  I am more curious than worried about this.  When my endo increased my dose of Lisinopril (BP medicine), the ankle swelling went away.  My biggest fear is being told that I now have to limit my protein intake.  I'm already limiting carbs and fats and am too thin.

Renae called on Thursday to tell me that my monthly lab draw showed that my level of Tacrolimus was very low.  We're hoping it is a fluke or lab error and I had it redrawn yesterday.

My BGs have been fluctuating more lately.  Since my last A1c and C-peptide results, my new strategy is to just increase my insulin.  Its frustrating, but works.  Yesterday was better, so hopefully I'm getting back to normal.  My sleeping habits have not been good lately, probably due to some of the above and below.  That can effect BGs.

Still working on getting a continuous glucose monitor.  I need to call my endo to see if he has submitted his letter yet.  I want to tell him about the Diabetes Symposium too.

GOODBYES

On Monday evening, Cassie left for California.  She and a friend made the trip across the country.  They arrived in Sacramento on Thursday where Cassie is in a friend's wedding.  They will leave there on Sunday to visit Gary in Santa Barbara and then make their way back to San diego.

Dolly was released from the Assistance Dog program.  She just couldn't get past her fear behaviors.  We had her for about 10 days until a family was found to adopt her.  We said goodbye to her on Thursday morning.  It was very emotional for all of us.  We really miss her.

I have decided that I want to try training another dog.  It was suggested that I try an older dog this time because I won't be having as much help at home now.

We have a nice weekend planned.  Nothing for today and a trip to Put in Bay with some friends tomorrow.  Sounds about perfect.

C-peptide and a visit to my endo

I have to comment on my C-peptide on a separate post.  I just put the results on the previous one and I am really excited to see that they have increased since the last time they were measured.

To compare:   at 2 1/2 years, Fasting C-peptide was 0.66               At 3 years it is 0.94
                     at 2 1/2 years, Post-prandial C-peptide was 1.39       At 3 years it is 2.20

My C-peptide has been steadily decreasing over the last few visits, so this is very encouraging to see.  It could just be due to the fact that C-peptide is difficult to accurately measure, but I'm still happy to see that I could still be this high.

My A1c has decreased during this time period too.  At 2 1/2 years it was 6.4.  Now, at 3 years it is 6.0

I have been more aggressive lately with using insulin.  I have been taking 7 units of Lantus instead of 6 and usually taking 1 unit of Novolog with each meal.  Sometimes I can still skip the suppertime dose if I am sure I will be getting some exercise.

I saw my endocrinologist this week.  He was pleased with my A1c and excited as I was with my C-peptides.  I asked him what he thought the reason for the increase might be.  I was trying to get him to say the regeneration word, but he thinks its due to the increased insulin and therefore decreased stress on the islets.  All I know is that I plan to keep on using the higher doses of insulin.

The bad news at this appointment was that my blood pressure was up.  It was 140/90 which is higher than I have ever been.  So he increased my dose of Lisinopril.  He was also concerned with some of the kidney function tests that I had done in Minneapolis.  He is repeating a few of them.  I see a nephrologist at the end of the month, so the followup should help him get a better picture.  I am still getting some ankle swelling during the day.

It sure seems like one thing leads to another, but that does keep it interesting.
In the meantime, I am working on setting up two JDRF Promise meetings and starting to plan for my JDRF walk next month.

Islet cell transplant - 3 years 7/21/11

Today is the third anniversary of my islet cell transplant.  We returned home last night from my visit to Minneapolis for my yearly testing.  We had a fantastic trip.  Both the clinic visit and the getting together with the people that I have met during this amazing event in my life were very rewarding and memorable.  It was my last clinic visit which was a very sad thought.  I have really enjoyed each and every trip that I have made up there.  There were 16 visits all together.  The initial screening tests, the signing of the consent form, 12 post transplant clinic visits, and 2 visits for the hypoglycemic unawareness study.  The traveling could be very frustrating, but the visits more than made up for it.
Looking back, these trips were in the con side of doing this.  Hindsight is 20/20.

We spread the trip into a mini-vacation as we did last year.  This year, we stayed the first two nights in Faribault, Minn.  We rode bikes and kayaked here for most of Sunday and Monday morning.  It was a nice town.  The weather was extremely hot.  Walking and golfing were both out of the question.

On Monday, we met my now retired nurse coordinator Janet for lunch.  We were originally planning on a bike ride, but the weather forecast made us change our plans.  It was supposed to feel like 101 by 11am.  We decided on lunch instead.  We had lunch with her and her husband and son and then spent the afternoon getting caught up and taking a hot walk through a beautiful park.  The visit meant a lot to me.  It was so nice getting to know her without a lab coat on and meeting her family.

Monday night, we met another group for dinner.  We met Camille and Deb who are my JDRF government relations friends, Deb's husband Randy, and Scott Johnson a fellow blogger.  We all shared what we had been doing and how all of these things intersect.  I must have been talking too much, because I looked down and noticed that everyone was through eating and I hadn't even begun.  The meal was good, but almost cold.  Camille has convinced me to try to set a Promise meeting with John Boehner.  I have been working on setting that up today.  Scott recommended some good places to kayak and we all hoped to get together again.  With friends like all of these, I won't need my arm twisted too hard to return to my special place up north.

My visit to the clinic was Tuesday morning.  I had lots of blood drawn for labs and also a 24 hr urine test.  Renae is my nurse coordinator now and I enjoyed spending the day with her.  She had taken care of me during my transplant, so I already knew her well.

Dr. Bellin came in for my examination and for me to do my usual grilling of her with my questions. She is always very cheerful but serious and answers my questions thoroughly and patiently.  My questions this time were mostly about my pending appt with a nephrologist and my worries about the immunosuppression.  She didn't seem worried about either situation and I haven't thought much about them since.  My labs will be a good measure of my kidney function and I don't have any symptoms from the immunosuppressants right now.

I had decided to give Dr. Hering a pig from my collection for his own collection as a thank you gift.  Renae put it in his office so that he would see it when he walked in.  It must have inspired him to come down for a visit, so I was able to see him.  This of course, was the icing on the cake.  We talked about how I was doing and about the pig islet cell research.  It was a special moment and a superb  ending for this last visit.

After everything was done, Gary and I did our last traditional walk along the Mississippi River.  It was extremely hot, but it would not have felt right skip this portion of the visit.  Despite the heat, the river was beautiful, the trees a brilliant green and the sky was blue.

We went out for dinner in St. Paul and were met there by Mary, my islet cell transplant BFF.  We had spent some good times together at the Transplant Summit in November.  It was so nice to see her again.  She has just celebrated her 4th anniversary and is still inulin free.  We enjoyed a nice evening reminiscing about our common experiences and catching up on our family news.

The trip home was uneventful except for the amazing heat.  It has followed us home because it was 100 degrees today.  We spent the afternoon floating in friend's pond and then went out to have a celebration dinner with the girls.  It has been a good anniversary day.

Here are my lab results.  The kidney function testing is having some follow-up.

Chemistry tests.  All normal except
Cholesterol 201   But HDL is 83 which makes that OK
Sodium  131  normal is 133-144
AST  50  normal is 0-45


Urine testing
Microalbumin  29   normal is 0-20
Urine Total Protein  0.35  normal is 0-0.2

Creatinine 0.87 for comparison with previous readings.  This has been fluctuating.
The Glomerular Filtration Rate result was 68   Normal is >60

CBC
WBC is 3.8  Absolute neutrophils is 2.8
Hemoglobin 10.8  normal is 11.7-15.7 
Prograf was 5.5
Rapamune was ?
A1c is 6.0  which is down from 6.6 in April (Normal is 4-6.)
Before breakfast:                 blood sugar is 119          C-peptide is 0.94
After breakfast (90 min.)      blood sugar is 241          C-peptide is 2.20

My only regret about this trip is that I forgot to take pictures of all of these events.  I was just enjoying myself so much that my camera never occurred to me.  Here are a few from our river walk and kayak trip.