Monday, December 26, 2011

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.

Thursday, December 15, 2011

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!

Tuesday, December 6, 2011

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 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.