Islets for US
Collaborative
PATIENTS
PATIENT
STORIES
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!
Mari
always positive
Congratulation Mari, You did it!
5th anniversary of stopping insulin completely!
Thank you for being part of our team.
Mari is a fighter, determined and relentless to get better, always with a joyful and positive attitude.
In order to qualify for her islet transplant Mari needed to quit smoking. I was skeptical that this was something she could tackle due to her long smoking history. But she did it !!! She looked at me and said: "ok, I quit", just like that she was done smoking (although I am sure it was not as easy as she made it look.
After the transplant, she needed 9 months of additional medications compared to other transplant patients that were accompanied by bad side effects. But again, she did it and again with a positive attitude. She did it, she went though that too.
On the day we told her she was ready to stop insulin, she was so excited that she tripped and broke her elbow. She went through two surgeries and a long road to a fully recovery.
Mari, you have been the inspiration for all of us, you never give up and always bring a smile with you!