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!
and her family
Stacy lost some islets after her first transplant due to rejection but she fully recovered after her second transplant in 2014 and has been off insulin for over last 6 years.
July 4th, 2014
Just wanted to share, that despite rejection set back, I am thankful for my islet cell transplant and look forward to my second transplant this fall. Now, I require only half of insulin I used to take.
Over the past three months I have been able to (for the first time I can remember):
~ go hiking with my family for 2 hours, without stopping to check blood sugar, without the fear of a low blood sugar, or packing juice boxes and
snacks for myself!
~ eat 2 pieces of Papa Johns pizza and have no postprandial spike (blood sugar was 112 2 hours after!)
~ downsize my purse in general, no longer juice boxes in tow
~ put my three young children first - always, and focus on them rather than a constant fear in the back of my mind of passing out.
Probably most importantly and noticeable to myself, family and friends is the improvement in my independence (I was reminded of this by a
friend today in honor of Independence Day).
Since April 4, when I had the transplant, I have not had a single hypoglycemic episode...which was unfortunately a normal event for our
My quality of life, and the quality of life of those who support me, has drastically improved. An example of this being that my husband
no longer calls multiple times a day from work to check on me; and if I am busy and don't answer, he would send a neighbor my way.
The past two weeks have been unexpected and not pleasant, but at the end I still stand by the decision we made to transplant. I would do it again to have freedom this Independence Day (and hopes of next July 4, being independent of insulin!!!).
Thanks for your time and concentration on this research!
Stacy with family
...FYI at the 5 year mark we do plan on throwing the last pod I ever wore away. It hangs out in my purse for sentimental reasons since the day I removed it after transplant! ...
...and today as promised, Stacy gave me her old Ominipod, she has been carring in her purse for the last 5 years. only for sentimental reasons .
Now, she is not only insulin free but also Omnipod free :).
September 20, 2020
Stacy you made it! 6 years insulin free