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!
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Tony and Mark
Nov, 2018
Both celebrating their
5th off insulin anniversary
after only one islet transplant!
Both had brittle T1DM with severe hypoglycemic episodes
Both had hypoglycemia unawareness,
Both had very poor quality of life
Both had high BMI=29
Both have had stable islet graft function
Both physically active (play tennis, run)
Both have now A1c 5.5
Both came to celebrate their anniversary with us
Nov 12, 2018
Tony: I was rejected by two other islet transplant programs due to my high BMI, which was almost 30. I was so happy to be accepted into a study at University of Chicago. I am even happier today celebrating 5 years completely off insulin after only one transplant and testing today confirmed my stable islet graft function!
Mark: Dr. Witkowski, do you remember that you wanted to reject me too due to my high BMI, slightly over 30?
Dr .W: Yes, I believed I could not help you, even with multiple islet transplant.
Mark: But I did loose weight and you had no choice to accept me
Dr. W: Yes, and I still can't believe you not only were able to stop insulin completely after only one transplant but also remained off insulin for over 5 years. It is extraordinary outcome and we all need to learn from that!"
