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!
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.
....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....