Tuesday, June 17, 2014

10 things I've learned from my islet cell transplant

I've been finding myself looking backward for awhile now.  Its been hard to accept that my islets are really gone.  I know that looking back is not a very positive thing to do, so I'm going to start looking forward now.  But, I thought I'd post this first. These are in no particular order.

1. Even a small C-peptide goes a long way.  I felt closer to cured at a 0.6 C-peptide than you would ever think.  Even a 0.2 helps.

2. Research doctors are not only passionate about their research, but are very compassionate and can't hear often enough how much their treatment has directly improved my life.

3. Although math is the best thing and the only thing we have to determine how to dose insulin, it is not at all reliable.  Its frustrating to hear an equation as the answer to a healthcare problem.  Its especially frustrating when the equation given is not for the mealtime that you considered the problem to be occurring at.

4. Technology is wonderful, but the nights are longer with a CGM.

5. Despite the diarrhea, mouth sores, anemia, and infections (viral and bacterial),  there is only one instance where I even began to wonder what I had gotten myself into.  That was the long night spent waiting for my units of blood to arrive while I was in the hospital.  In my 5 1/2 year stint, these are the only 6 hours I would trade for a day before my transplant.

6. The JDRF consists of so many people who are determined that no one should have to live their entire life with this disease.  Retreating is not an option and we will get this done.

7. Having diabetes and crazy fluctuating blood sugars really decreases energy levels.

8. Being involved in a clinical trial is just as important as it is rewarding.

9. Organ donation is a critical part of islet cell transplantaton.  Without donated pancreases, this vital step towards the cure would not have been possible.  (Until pig islets :))

10. Diabetes Alert Dogs and what and how they can perform is a real science.  Until the cure, these dogs can offer both physical and emotional support.

Now, I'm looking forward to whatever might come along to help or at least entertain me.


Camille said...

Time has passed, but this post is well worth rereading.

Thank you for so carefully chronicling the experience. You are a pioneer. I am very anxious for the day when living with type 1 becomes much, much better--in whatever form that takes.

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