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!  

 
Sue
Teacher and runner

Sue travelled to Chicago from Europe for her islet transplant over 7 years ago. She became insulin independent after her second islet transplant and later required a third one to extend  her time off insulin.

 

Unfortunately, she developed chronic headaches possibly due to  one of anti-rejection medications needed to protect the islets. She chose living with headaches rather than lowering the dose of anti-rejection medication, which may lead to islet failure and recurrence of severe hypoglycemic episodes.  

 

Despite that Sue strongly feels that her quality of life has substantially improved since her islet transplants. It has been 11 years of taking anti-rejection medications  and 8 years off insulin. 

Aug 2018,   ....I still have headaches, but my blood sugars are great. I still wouldn't change a thing. I had a bad dose of flu early in the year. It lasted a long time but mu sugars were hardly affected....

CONTACT:

 

 

 

 

 

 

 

 

Transplantation Institute

Clinical  Research Center

 

Islet and Kidney Transplantation

Manager, Lindsay Basto RN MSN 

Lindsay.Basto@uchospitals.edu

tel. (773) 702-2504

fax (773) 926-0671

 

Islet and Cell Processing and Research

Manager, Karolina Golab, PhD

kgolab@surgery.bsd.uchicago.edu


Transplantation Institute

University of Chicago Medicine

5841 S. Maryland Avenue

MC 5026, J-517

Chicago IL 60637

Polish-American Transplant Center

Clinical Coordinator

Patrycja Ulijaszyk RN 

Patrycja.Ulijaszyk@uchospitals.edu

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© 2018 by Kajetan Witkowski