June 2015, Islet transplant patient re-union.
Our intention is to present our patient experience while going through islet transplantation procedure, recovery and during the follow up.
Patients came to us desperate, after years of struggling with blood sugars levels, sudden and severe lows and highs. We accepted only those suffered despite their best efforts and optimized insulin care by the best endocrine specialists.
Most of our patients have had great outcomes, some of them right away after the first procedure, others failed only to succeed after a second or third transplant. A couple of them quit after losing the islet after initial success. Complications vary among patients.
Majority of patients benefited from the islet transplantation procedure, which was confirmed in multicenter trials proving safe and effectiveness of the approach.
Now, it is high time to offer islet transplantation to our patients in US as a standard of care procedure reimbursed by insurance the same way alike it has been done in other countries. Performing more will drive further progress and even better outcomes in the future.
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 transplantation!
Tony and Mark
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!"