Here are our patients who decided to come back to Chicago from different states of US and meet to give their testimony as well as share their experience about islet transplantation.
There are all concerned, that despite their participation in the trial, their efforts and great experience, the procedure is still not available to other Americans and not approved as a standard of care in the US.
Limited progress has been made over last 20 years since due to extremely high cost limited number of patients participated in clinical trials. Despite that, safety and sufficient efficacy have been proven in the US studies and the procedure became a standard of care in Canada, Australia and European countries, but not yet in the US. The main obstacle currently is a unique regulation of islet as a biological drug in the US in contrast to other countries.
The further progress in the field is impossible without amending the current regulations in the US, so islet transplantation could be reimbursed by insurance, more patients involved and cost of research more affordable.
Some patients have had great outcomes with full long-term insulin independence. Others have had partial islet function, which still prevents them from severe hypoglycemic episodes, while requiring some insulin supplementation. Few patients lost their islet graft function after a while and resumed their insulin pumps. Experienced already benefits of insulin independence despite immunosuppression, four of those without hesitation requested subsequent pancreas transplantation and have been enjoying insulin independence again.
Importantly, none of patients have ever regretted going through the process of islet transplantation. Complications varied, but none of them were as life threatening or compromizing daily life as hypoglycemia unawereness with severe and unpredicted lows. Our patients again experience their joy of life and feel again being in charge of their lives fully participating socially, emotionally and professionally. It is an ultimate satisfaction and award for them.
Our patients wish that every American who experience what they did prior to transplant, could have an access and opportunity to benefit from islet transplantation, like they did. Thats why, they provided their testimony and to give hope to all those patients who failed all available means of glucose control and loss control of their lives.
These testimonies are also for physicians, who are not fully aware of possible positive impact of islet transplantation on their patient lives and do not advocate for that.
Here are the stories of individuals with long standing, type 1 diabetes with problematic hypoglycemia, who received islet allotransplantation.
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!
in a candy store
... 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.
...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.
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!!!
Picture above-...Thought of all of you when I found this heavenly place!
April- 1 year off insulin!!!
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.
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!
2 years with no diabetes after a pancreas transplant!