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!
Shannon
in a candy store
April 2016
One year with no insulin!
June 2014
... I feel good, and I know there is a lot of apprehension going on between patients and loved ones of patients lately. I just want you to know, this islet transplant, and especially the program at U of C, has been an absolutely incredible life changing action for me that I wouldn't change for the world. All I have to do is look back to life on insulin and the pump and constant worry and I know this was the BEST decision ever.
November 2014
...Today marks the 31st anniversary of my diagnosis with T1D. Back then, my blood sugar without any insulin was 1,629. After an IV drip, it came down to 869. Today with only 5 units of Lantus, the past several days (haven't really needed any Novolog and my islets are responding in the right timeframe, my BG is 108. I want to thank you both for this unbelievable gift and no matter how cranky or stubborn I get, I will be eternally thankful to you both and everyone in Chicago, North Carolina and Arizona, including my donor, who made this possible.
Dec 2015
Hi! Feeling good-blood sugars leveled out so I stopped insulin again as of Monday because even one unit is too much now and I've been exercising more. Cough is gone, foot is healed, and I just got accepted to graduate school!!! Wishing you all a very Merry Christmas and Happy New Year!
Tomorrow is supposed to be 68 degrees here!!! Thank you for being a huge part of what has made me so thankful, so blessed, and so fortunate to pursue my dreams and live a healthy, happy life!
See you in the New Year!!!
January 2016
Picture above-...Thought of all of you when I found this heavenly place!
November 2018
Although Shannon eventually needed some insulin suport for optimal glucose control , she still had not been experiencing severe hypoglycemic episodes. Nevertheless, she asked and she received a whole pancreas transplant , which allowed her to be again insulin free.
May 2019
It has been uneventful but full of joy 6 months off insulin since her pancreas transplant.
She continue taking the same anti rejection medication as after islet infusion. Happier than ever!
