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!
Judy
in her dress
'... no pump, finally could wear my dress without trying to hide that bulky device..." :)
Judy received first islet transplants 4 years ago. Since then has enjoyed improved glucose control and got married,
She also required 2 more islet infusions, spent some time off insulin, has good glucose control (A1c 4.8) now requiring 10u of insulin a day.
I was born with T1DM but wasn't diagnosed until my first birthday, when I almost died. My Mom went to my room...and found me blue and my bed mattress soaking wet.....
....From the time I could talk, I started praying for a cure....
.... After stopping my insulin and disconnecting my pump I was so happy...Even more when I realize that I could finally wear a tight dress :).
.....Considering that it is a clinical trial, I have had few setbacks, but I still closer to being free of diabetes than before and most of islet are still working....
....I wholeheartedly thank everyone involved with the study and who have played or will play a part in my transplants. I am ready for my next one.