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!
...Islet transplantation allowed Terry not only to overcome diabetes but also to find the love of his life...
My name is Terence but I go by Terry. I became diabetic in 1979, when I was 14 years old.
My mother took me to the emergency room because of my confusion, only to find out it was diabetes. As a teenager checking my glucose was not fun. I had to urinate in a cup and then dip a glucose strip just to check my sugar. Two years later, I was diagnosed with epilepsy. When I had my first full-time job, my sugar was so unstable, I was placed on disability until I received an insulin pump. Life was looking good, but that didn't last. Becoming a diabetic forced me to involve my family. A call list was made for me to check-in with my family on a daily routine schedule. Whether I was at work, on a date, or shopping, I had to report to my family without fail.
In 2008 an aneurysm in my brain burst. I asked my mother why is God giving me these problems, her reply was," God would only give you what you can handle." With those words inmind, I knew I couldn't give up. I didn't let my diseases take control of me;
I TOOK CONTROL.
It was from my endocrinologist that I heard about islet transplant. I wanted to learn more so I researched it on Google. I discovered University of Chicago offered islet transplant and I immediately worked with Dr. Witkowski and my coordinator, Lindsay. The islet transplant went well and I became "diabetic free" for a few years.
Then, not only did I not give up on life, but I also found love. After three and a half years of dating, my girlfriend and I got married and honeymooned in Ireland.
Sadly, my diabetes returned, but that didn't stop Dr. Witkowski from offering another hope: a pancreatic transplant.
Entering 2019 went with a big bang! Having a diligent team (Lindsay, Dr. Witkowski and the staff from the University of Chicago) my wait for procuring a donor was short. I can't imagine the pain and sorrow the family of the donor, but I do know words can never expressed my heart felt sorrow for their loss and at the same time I am forever grateful for the gift the donor has given me.
Dr. Witkowski, Lindsay, and the staff at the University of Chicago hospital did a fabulous job. I want to give my deepest and sincere thanks to all who were involved in giving me a chance to live a regular life again before diabetes. This feeling of freedom is sooo ...PRICELESS.