June 2015, Islet transplant patient re-union.
Our intention is to present a few of our patient experiences of going through islet transplantation. Some patients have great outcomes, while islet grafts completely failed in other patients. Complications vary among patients.
We continue optimizing the procedure to improve patient outcomes and minimize the complications to benefit our patients.
These are the stories of individuals with long standing, "brittle" form of type 1 diabetes mellitus, who received islet allotransplantation as an alternative procedure to whole pancreas transplantation.
All of them suffered for years from very similar, debilitating symptoms, leading to the same beginning narrative:
....After many years of taking insulin and religiously keeping my blood sugar under
control, I gradually stopped feeling when it was low, too low. I used to get agitated, shaky, hungry and knew I needed to grab a snack... Not anymore! Now, it happens without any warning. I can't predict it. I am completely unaware when my speech starts to slur or when I am getting confused. Sometimes finding myself in unknown places, sometimes I pass out and wake up surrounded by family members, strangers or paramedics who injected glucagon. The frustrating and scary part is that I can't control it, and can't anticipate when it will happen. It may happen at night, and I am terrified that I may never wake up. My wife and children check on me several times a day and they panic when I am not picking up the phone. Not only my life, but the life of my family is badly compromised. I have been listening to my endocrinologists, trying several different settings on my pump a day and more at night but still lows happen.
The only thing I can do, is to run my glucose high when I know I will be driving or have stressful days at work. But it means- everyday! Now, my A1c is 8-9 but I can't live like that either. I don't want to lose my sight, have toe amputations, a heart attack, or lose my kidneys because of high blood sugar. I am trapped, depressed, Prozac does not help anymore. ... I live in constant fear and am miserable. Please help!
....and below, you will find the rest of each patient personal story .... after the islet transplants!
The moment when Nick stopped using his insulin pump. There were enough islets engrafted for him to be insulin independent!
Nick celebrated his 2 years off insulin.
This year, he also intensified his training and run two half marathons!.
Congratulation Nick, you are the champion!.
Saying 'thank you' seems to only scratch the surface of gratitude we feel for the opportunity to participate in this program. You and Lindsay have literally been there for me (in person and virtually) 24 hours a day.
Your enthusiasm, patience, support and advocacy for me has been overwhelmingly positive - the innovation and care this program offers should be models for how clinicians work with patients. You both have made a massive difference in my life.
After just 34 days I feel healthier, more energetic and more in control of my disease than I've felt for 20 years - while this program is currently a clinical trial, the positive impact it had made in my life and in the life of my family is immeasurable.
Thank you for helping me take my life back.