My Story in A Sweet Life

I recently had the honor of having my story as a feature on the online magazine A Sweet Life.

Here is the article.  It came about by me contacting them and asking if they would write about the end of the Islet Cell Transplant clinical trial and through discussions and editing it evolved into this nice story about my experience.  It was a real learning experience and inspired some real soul searching.  They are my favorite magazine and I like both what they cover and how they write about it.

Writing the story made me stop and really think about what all of this means to me and how it has affected my life from so many directions.   Obviously, my health is greatly improved.  I am free from the constant worrying about going low, and getting up at night to check, and all of the countless other details of dealing with Type 1 continuously.

My experience has inspired me to become much more active in the diabetes community.  This blog, the islet cell recipient facebook page, advocating for the JDRF, all have me feeling very connected.  The hard part is the feelings I have about the disease itself.  Type 1 is just a bad thing.  There is nothing good about it.  It just breaks my heart to think about kids still dealing with it.  I sometimes find myself very overwhelmed with wanting to help them and any Type 1 to escape from its clutches and fate.  My present situation of having lived with Type 1 in the past, and possibly in the future, can become very emotional.  I feel extremely lucky for myself, but sometimes its hard not to feel a little guilty about those I feel I have somehow left behind.

My present situation is good.  My kidney function tests are in line.  No side effects from the immunsuppression.  Feeling good, and again no worries of lows.  My insomnia seems worse, but hopefully now that Christmas is over, that will subside.

My current concerns.  I've had one cold already this season.  It seems to have cleared on its own which is good.  My BGs have been out of line(probably due to the cold).  I have increased to 9 units of Lantus/day, but hope to go back to 8 when the cold is completely gone.


Here are some pictures of our pre-Christmas trip to Florida.  I think I got my cold on the plane trip.  It was worth it.

Manitees

Kudos to the JDRF!

I have been reading that the JDRF will be funding Viacyte, a company that is using pluripotent stem cells to treat diabetes.  In addition they are encapsulating the cells to protect them from the immune system so that immunosuppression is not necessary.  Read the press release here.

This news is exciting to me because it combines three of the options that I feel will lead directly to the cure.  Islet cell transplants, stem cells, and encapsulation.  If they would use pig islet cells, that would be a fourth! I posted this back in June of 2010 about my ideas of where the cure would come from.  I support the JDRF wholeheartedly because of decisions like this.  Their purpose is to find a cure and they are very aggressive in what they decide to support.

I like the new logo too!

My New Normal?

I know a few family members and friends would like to have a heyday with that title.  But, I do  have SOME normal aspects.

I saw the nephrologist for my follow up appointment last week.  It has been 3 months since my initial visit and she had ordered some tests in between.  Overall, she says that everything looks good.  My renal ultrasound was normal.  My 24 hr urine was normal.  My sodium was just a little high, but no higher than before.  My creatinine was 1.1 this time, which is the same as 3 months ago, but still on a slow increase.  I asked her about this, and she said that its not really high enough to be of concern.  I must have been worrying about this, because I felt very relieved to hear her say that.  She says that the increased values are most likely due to my immunosuppression and bactrim.  Its a side effect.

This seems to be a common thread among my current abnormal lab results.  I used to have low cholesterol, low blood pressure, and normal everything that was non-diabetes related.  Now, not so much.  When I ask about dietary changes, the answers are similar as well.  Watching fat will help my cholesterol.  Watching salt and potassium, might help with my blood pressure and kidney function.  BUT, it wouldn't be enough in any of these instances.  I have to take additional medication to balance the effects of the immunosuppression.  My normals have shifted.  I can handle that.  None of the new medications have any side effects at all.  Just more pills which I am used to by now.

When the nephrologist saw on my chart that I had mentioned ankle swelling, she took a look at my ankles.  They were indeed swollen and she prescribed a diuretic.  Again, no symptoms.  Its only been a few days, but there does seem to be less swelling.  I always thought my ankles were too skinny, but I am alway glad to see them back the way they belong.

My immunosuppressant levels have been inconsistent lately.  My Rapamune is now up to 10mg/day and Prograf is down to 10mg/day.  

I was contacted by John Parkinson at DiabetesCare.net to do an article about my transplant story.  He interviewed me over the phone, and the interview is here.  I've visited this site many times and use it as a resource for news articles on diabetes topics.  I am pleased with the article and the chance to share my message here.

I just returned from a great trip to California to visit the kids.  My Mom and I had a wonderful time and the kids all seem to be doing fine and having a great time.  I only wish it wasn't so far.

World Diabetes Day and the DOC

November is Diabetes awareness month, and Nov. 14th is World Diabetes Day.  There is a lot of celebrating and complaining within the ranks about diabetes and its many and varied issues.

Its a big deal on line, but from what I can see, not so much in the real world.  Diabetes is really a hidden disease.  Not many people know very much about it.  There are several reasons for this.  Diabetes has two types.  And over 90% are Type 2s.  That means that most people who even know a diabetic personally, know a Type 2.  And, although there are similarities, the gulf between our treatments and the challenges we face is massive.   And, from my experiences, Type 1s are mostly very private about their disease.  Ironically, the times that we need the most help and attention is the same time that we feel very removed and depleted.  We just want to be left alone until we feel capable of speaking intelligently.  At that point, we prefer to walk away and get back to what we were doing when the low struck and interrupted our day.  This scene does not serve to educate the people around us.

In an attempt at a real shout out to the public, the JDRF took out a full page ad in the New York Times an attractive picture of a cute child and a chilling statistic.  The caption reads that "Piper has Type 1 diabetes.  One in twenty people like Piper will die from low blood sugar."  I have been reading about this online, and the statistic is valid.  Its awful that parents have to see this, but I can understand why the JDRF has decided to go this route.  It really is time to get this message across.  The artificial pancreas project is pushing for FDA approval and if it does all its supposed to, it should lower this number.  The strong point of the APP is that it will have the ability to turn off the pump if it detects a low blood sugar.  I'm not a big fan of the APP, but this feature would be nice.  It would allow for better sleep for diabetics and their parents.

The DOC, Diabetes Online Community has become important to me.  There exists an entire network of diabetics who have found each other online.  I found it about 5 or 6 years ago when I was learning about Symlin, the new drug I was trying out to supplement my insulin.  There were a few people blogging about their experiences with it.  It helped to encourage me to keep trying and that the nausea and horrible lows would both become manageable.  Now, I use the DOC to stay in touch with what is going on in research, in the JDRF, in advocacy, and now in diabetes alert dogs.  It is a useful tool and can be both encouraging and nurturing.  Just like any group who have one thing in common, we are a mixed bag of people. but that makes it interesting and effective.

And sadly, I would not even be aware that it is World Diabetes Day, or even month if not for the DOC.

JDRF walk 2011 and TrialNet

My JDRF walk for this year was again fun and successful.  I had 17 people at the walk and many others who couldn't participate in the walk, but gave generous donations.  It was a warm and sunny day which makes a walk along Lake Erie a real pleasure.

Before the walk began, I wandered along the booth and education area and came across a TrialNet study.  I had heard of this before, but didn't know exactly what it was.  Its actually very simple.  Its a blood test that can help determine if the relative of a Type 1 diabetic has antibodies that can cause diabetes.  Four antibodies are tested for.  The more a person has, the more likely they are to develop diabetes.  I called Cassie and Becky over to be tested.  They had their blood drawn and it was sent to a test lab.

The results came back a few days ago.  Both girls had good results.  They had 0 of the 4 antibodies which is the best possible result.  It was a relief for me.  Especially for Becky.  She had mononucleosis in 6th grade.  I had mono in high school and it was soon after that that I developed symptoms of diabetes.  It can never really be known for sure, what causes a specific case, but mono is one of the most likely culprits.

Gary is in the process of having this test done as well and I'm hoping he will have the same good news.


My health has been good, but with some worries lately.  My creatinine has increased to 1.1 which is the highest its been.  I'm still getting some ankle swelling and am thirsty all morning.  I see the nephrologist at the end of this month and am hoping for a good report.  I think that if the worry factor was decreased, I wouldn't notice the other things so much.  After my initial visit, I was told that my results were nothing to worry about.  I will be drawn again in a few weeks and the results will be compared to the initial tests.

I have also had some stomach symptoms.  Twice now, I have had an upset and irritated feeling stomach that has lasted several days.  Its hard not to blame the immunosuppression, but since it has cleared up on its own, I am thinking it wasn't the pills.  I have been very busy lately, and am wondering if the stress of that was causing my stomach to react.

My cholesterol and LDL have been higher.  Cholesterol 227 and LDL 127.  I'm expecting an increase in my statin the next time I see my endo.

None of these things has any uncomfortable symptoms, so I am still feeling good.  My BGs have been good lately.  I have increased my Lantus to 8 units/day and now can get away with not taking any Novolog with dinner on some days.

The Senator is doing well.  His barking is better with few relapses.  He has been doing really well on our outings. He's very attentive to me and not as easily distracted.

Becky, left for California last week.  They drove and will be living with Cassie for a week or so until they find an apartment near where she will be working in San diego.  Again, I was happy and proud for her to be able to do this, but sad for us.  We really miss her.  And Senator is missing Callie.  I already have a trip planned for a visit next month.  :)