Sunday, May 16, 2010

Group Blog - Dream a little dream - life after a cure.

This is the last day for the group blog and a logical place to end the week.
I am in the position to be able to describe how the cure feels.  And its absolutely great.

I can live my life without having to worry about having my blood sugar dropping

  •  for no reason
  • at an inconvenient time
  • without my knowledge
  • even though I just ate something that should have caused it to rise
  • while I'm driving
and the list goes on and on.  

I can eat when I want and not eat if I don't want to which might be the best part.

I haven't really changed my diet much and I still exercise like before my transplant, but I don't have to worry about the amount of either.  I still test my blood sugar about 6 times a day, mostly for the study, but I think I would almost that much anyway just to make sure everything is ok.

Even though I loved both my pump and my continuous monitor, I don't miss carrying them or maintaining them.  I don't have to shop for clothes with pockets.

I actually can leave the house with no food in my possession.  I never thought I would be able to do that. ever. But now I make a conscious decision not to.  Low blood sugar, even with vigorous exercise is not an issue.

My mild retinopathy is gone.

Of course, there are two downsides.
One, this may not last forever.  Its something that I acknowledge, but try not to dwell on too much.  I know of several people who are several years out and there are a few patients at U. of Minn. who are about 10 years out.  My competitive side is hoping to outdo them, but I hope it is a perpetual race.

Two, the immunosuppressives have some side effects.  I think I have had my share of them.  But I would still rather deal with them than insulin.  Right now, I have no side effects at all.  Life is very good.

I only hope that soon the cure will be available for everyone.  I believe that my experience is a proof of how close we really are.

Saturday, May 15, 2010

Group Blog - Diabetes snapshots

These are the significant items that I have chosen to represent my present diabetes experience.


Testing and recording my blood sugars. 

Traveling to Minneapolis for my clinic visits.


The T-shirt I made as a thank you to the staff at the Schulze Diabetes Institute where I had my transplant.

My hope for the future of pig islet cells.

And of course, Blogging


Friday, May 14, 2010

Group Blog - Lets Get Moving - exercise

The day that I received my diagnosis of diabetes I was told to buy a pair of running shoes on my way home and start running five miles a day, every day.  The doctor had read about a pro football player who didn't need to take insulin during football season because of all of the exercise he got during practice.  He assured me that I probably would not lose my legs and sight if I followed this plan.

I didn't buy shoes that day.  I was more inclined to go home and tell my husband that I was just diagnosed with an incurable disease.

But, the next day I did buy shoes and started running.  Gary coaches track, so he knew how to get me started.  I eventually worked up to two miles every day.  I did that all four seasons, but I can't say I really enjoyed it.  I never seemed to achieve the proverbial (to me) runner's high.  After I had been running for a few years, I did run five miles with a few friends.  I was surprised that I didn't feel any more tired than after two miles.  I think it helped that I was running with two or three other people and we were talking and laughing for parts of it, so I was distracted from my tiredness and sweating.  I don't like the sweating part of running either.

Then I got pregnant and had complications that made me have to stop running until my son was born.

About a year later, after I has adjusted to life with a baby, I decided that I should probably start up again.  I ran about a mile before I remembered how much I did not enjoy this.  I stopped and walked home.

I have walked almost every day since then.  My son just turned 24.  Again all four seasons.  But I love my walk. I don't know how far I actually go, but it takes 30-45 minutes.  I look forward to it and it affects the goodness of my day.  I make a point to walk fast, because I know that walking is not aerobic.  I'm starting some stretches and exercises to strengthen muscles because I have to worry about osteoporosis.

As far as how it affects my diabetes, only time will tell, but I think it must help.  When I used my continuous monitor, I could see how it almost always brought my glucose levels down.  Even more than I would have guessed. It also has to be good for my heart and circulatory system in general.  Its definitely good for my mental health.

Since my transplant, I can still see how exercise affects my blood sugars.  As I mentioned in the previous post, I still eat at regular times and in controlled amounts.  I can tell when I have not had any exercise after a meal and when I have.  Its just a good thing to do and I am glad that I enjoy something that is important to my daily and long term health.

My walking companion.

Thursday, May 13, 2010

Group Blog - To Carb or Not to Carb

This will be an interesting topic to compare with other diabetic bloggers.  I just checked the list and there are a lot of people participating in this blog week.  Its really a good idea.

Most diabetic diets are based on counting carbs.  One carb unit is one slice of bread, a serving of milk, a small potato, and so on.  Each diabetic has a ratio of insulin to carbs.  Therefore, the fewer carbs eaten, the less insulin you need to take.  Since insulin is not just the treatment, but the demon, it is favorable to take as little as necessary.

But carbs yield energy, so you need some.  I tried to keep carbs to a minimum before my transplant.  I would eat a very small bowl of high protein cereal (Special K High Protein) and sometimes some boost for breakfast.  I would have yogurt or a slice of toast with peanut butter for a snack.  Lunch was a Lean Cuisine with no more than 45 carbs in it or soup.  Afternoon snack was crackers and cheese.  Dinner was more varied, but about 45 carbs which included my milk. Then ice cream before bedtime.  It was the best thing I found to get me through the night, and it satisfied my sweet tooth.

That was an ideal typical day.  Not much variability except for supper.  Of course, before the transplant there was literally never a typical day.  Throw in orange juice or a granola bar if I was too low.  Skip a snack or a carb if I was way high before a meal.  And exercise lowers blood sugar and requires carbs for energy.  It was all very complicated.  My doctor would prescribe how to count carbs and balance with insulin.  And I would be constantly adjusting for the variables.  It felt like a very scientific crap shoot.

Today, I follow that same diet plan.  The difference is that instead of trying to balance the insulin with the carbs and exercise, my new islets do that for me.  And so much more efficiently.  There are no more calculations because the islet cells are there to react immediately to the glucose that is presented to them.  Timing is no longer a variable.

So, to answer the question at hand, I carb, but try to keep it to a minimum still.  My new islets are working from my liver instead of my pancreas and are fewer in number than a nondiabetic.  So I pamper them as much as possible.  I don't eat high carb foods and I exercise to supplement their work.

Sometimes I ponder the "use it or lose it" theory and am thinking of experimenting a little with some higher carb foods to see if they bring my glucose levels down more quickly.  It would be interesting if it did work like that.  I might have to change some of my thinking.

Here are two  scary things to see in your garden.

Wednesday, May 12, 2010

Group blog - My biggest supporter

This is an easy one.  My husband, Gary is my biggest supporter.  He is one of those strong people who are easy to lean on.  I asked him just the other day if it was a good thing or a bad thing to have your wife believe that you can do anything.  He was at the time, trying to throw a mattress out of an upper story window of a rental house that we own.  The mattress wouldn't fit, so he had to dismantle the window frame.  Inside and out.  Pull the mattress out the window onto the flat roof and lift it over the electric wire and throw it hard enough to not tear off the gutter on the way down. I said that I hope its mostly a good thing.  At the time, he just kind of gave me a look, but later said that he was very touched.  I really do believe that he can do anything.

He never complained or questioned me all the times when I said that I would do something and then had to back out or delay whatever it was because my blood sugar took an unexpected dive.  He did most of the driving.  His patience and understanding are without limit.

During my transplant and the recovery period from it, he again did whatever I needed, but also shared my enthusiasm with the experience and awe of those that made it possible.

Since the transplant, he has put up with some of my crazy symptoms of the immunosuppressant drugs, and was even getting a little more worried than I would have liked.  But he listened and understood when I sat him down to explain that it is all worth it and just part of the experience.  He is happy with me and for me that the symptoms are gone.

I can't imagine going on this journey without his support.  The bumps would be more painful and the joys, much less spectacular.

Monday, May 10, 2010

Group blogging- wildcard

I'm trying something different this week.  Karen of the Bitter-Sweet Diabetes blog came up with the idea to have all of the people who blog about their diabetes experience to write about the same topics this week.  Every day is a different topic. It will be interesting to see what people have in common.  I just checked and there are a lot of participants.

Today is designated to describe a day in the life of your diabetes.  Karen also decided to include a wild card day to describe whatever you want.  I am starting with my wildcard day today.  I think I need it to provide a transition as to why I would still want to do this.  So my topic for today is -   Am I still a diabetic?

I have had this conversation twice recently with people who know me and my transplant experience well as to whether I am still a diabetic.  They were both surprised, and curious when I said that I still am.  I know that I say often that I feel cured, and I do, but I still have many of the same habits, both physically and emotionally.  I still test my blood sugar about 6 times a day.  I do this for the data for the islet cell transplant study and for my own knowledge as to how I am doing.  Instead of taking insulin, I take handfuls of pills with my meals.  And I still exercise every day.

Emotionally, I still worry over each blood sugar.  The range of numbers that I see now (85 to 158 this week) is much different than before my transplant (40 to 400 on an average week) and that is why I feel cured.  My new numbers don't elicit any symptoms at all.  The worry is over what the future will hold, just as before the transplant.  I can't bare to think, say, or write that my cells might not last forever, but I know that statistically, they might not.  One of the reasons that I chose U. of Minn. as the site to have the transplant done is because they had the best statistics, but still there is no guarantee.  That's just part of being in a clinical trial.  Just like before, I do my best to stay healthy, but I know that its all up to my immune system as to how long my new islets will last.  Other than taking my pills, there's not much that I can do.  The book Flowers for Algernon haunts me, but I have certainly learned how to appreciate the present and a lot about what is really important.

Maybe even more importantly is that being diabetic for so many years is just too ingrained into my self concept and identity. You can't just take it off and walk away.

Thursday, May 6, 2010

JDRF advocacy

I had an interesting experience last week.  I got an email from the JDRF advocacy group asking if I would go to my congressman's office to try to convince him to vote for the Special Diabetes Program that is coming up for renewal soon. The meetings are based on a Promise to Remember Me theme.  When I agreed to do this, I thought I was joining a group who was already planning on attending and I would just show up and tell my story.  It turned out that the group consisted of me and whoever we could find to join me.  That proved to be difficult because it was on a Friday afternoon at 2:30.  Most people that I called were either working or had other plans.  I never realized before how few Type 1 diabetics I know.  And those that I did know were all children of friends.  Not a single person of my own generation.  Luckily the JDRF people were able to find two other families to go with me.  The group included a father and daughter, a mother with her diabetic daughter and a sister, and Gary and me.

The meeting went well.  Congressman Latta listened to all of our stories and asked a few questions.  The girls both had pumps and continuous monitors and could speak well about those.  The mother had calculated how many insulin injections her daughter was spared from taking due to having the pump.  I told about my transplant last.  Judging by some of the questions he was asking I could tell that Rep. Latta did not know anything about the procedure.  So I attempted to give him a reason to reconsider his previous "no" vote on this issue. I explained that my experience is living proof that the money is going to something that has been proven to be fruitful.  It would be a shame if the research had to stop now.  We are so close to the cure.   I had been coached to ask if he would commit to cosponsoring the bill at the end of the meeting.  But thankfully the dad beat me to it.  Rep. Latta talked all around the issue without giving an answer, so the dad asked again.  He still wouldn't commit, so we left without our answer.  We did get to take some pictures as we left.

I was asked to follow up this week.  I called his DC office and asked to speak to Rep. Latta's health care aide.  I left a message on her voicemail, and am waiting to hear back.

I've had a few experiences with the JDRF now, and I am increasingly impressed by what I see.  It is a well run institution by very knowledgeable and dedicated people.  The main focus is on finding the cure for Type 1 diabetes.  My transplant was partly funded by the JDRF.  They are into most of the research that I have been watching lately.  They just began funding for Living Cell Technologies in New Zealand, which is the group that is using encapsulated pig islet cells for transplantation.  They are looking into stem cell transplants as well.

This tree radiates a sweet smell and the sounds of bees.