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!
Keith
and his Harley
Keith received a kidney and pancreas transplant at the same time, but his pancreas graft failed right away.
Afterwards, his kidney graft worked well, but he was still struggling with blood glucose control. An A1c of 11 would eventually damage his kidney graft, heart, eyes, & feet.
He received two islet transplants and has been off insulin so far for over 3 years with A1c around 6.
I became diabetic when I was 5 years old ...growing up as a child I played all kinds of sports (like football, hockey and baseball) just like all my friends but due to my diabetes I was limited to the amount of time I could last before I had to take a break due to my sugar levels being low. I would have really bad mood swings in school and with friends, when my levels were off. I have blacked out and did not know what I did or said....
.......The pump helped out but I still had the highs and lows. I still had to adjust the amount of insulin I received and I had to change my sites every 3 days (I felt trapped by the tubes). My body started to shut down. My kidneys started to fail and I ended up on dialysis 3 days a week..
....After my islet cel transplant, I started to notice a difference in how I felt. Since receiving the Islet cells I have not been on any insulin, no lows or highs, I am not as tired as I used to be and my mood swings have gotten better. My family and friends have noticed how alive I have became and I enjoy being around others. My eye sight has improved. I have more energy and I don’t feel as depressed as I once did. My A1C went from 12 to 6.2, wow.
The Islet cell transplant has given me a whole new life. I want to thank Dr. Witkowski
and his team for all they have done for me, they have no idea how much they have changed my life.