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!
Daria became free of diabetes after only one islet transplantation from a deceased donor.
It has been only 2 months after but her blood glucose has been fully controlled without insulin injections.
Daria suffered from chronic pancreatitis and strong abdominal pain, which frequently recurred throughout her entire childhood and adolescence. Finally, her pancreas had to be surgically removed, which freed her from the pain but the price was of that was high. She became diabetic (type 3) and struggled with her blood glucose control for over next 4 years. She lived with HgA1c of 15, frequently being sick and in the hospital.
Now, after her islet transplantation she is not only pain free but also free of diabetes. She can enjoy her new life and take care of her daughter Maja, who was inspiration for Daria's resilience and recovery.
Daria: "I am so grateful and thankful for Dr. Witkowski and his team. Ever since I was 8, I was struggling with pancreatic pain, having stones, staying in the hospital etc. I had to have a whole pancreas removed, because I had a genetic mutation called PRSS1. This led me to be a diabetic at the age of 20. I had no idea what being a diabetic even was. My sugars were always high because I was scared of having lows and passing out. My body and mind was causing me this fear. After 4 years my A1C was 18… (average sugar 500) I lost a lot of weight even though I ate so much all the time. Two months ago Dr. Witkowski and his team did an islet transplant taking match me islets from DONOR’S pancreas. He injected those islets into my liver, no anesthesia needed. After that I was still taking some insulin because we needed the islets to calm down, relax and find their place in the liver. After 4 weeks, I was completely off of insulin. It was a miracle to me and I finally STOPPED suffering.
I got my life back, to play with my beautiful 5-year-old daughter. It takes time to adjust of course but not having to check my sugars, my pump, my continuous glucose monitor was a relief, they were finally off my body. I’ve never felt so free. I could take care of myself and for my daughter because my daughter needs and will need me and I can provide that for her now. No more pain no more hurting no more hospitals and staying there for over a month at a time. I’m blessed by Dr. Witkowski that he didn’t give up on me, same as Lindsay, she was so helpful and I respect her so much, and Laurencia for always encouraging me. I couldn’t be happier!!I weighed around 90 pounds, now I am 135, healthy and proud. I over came my fear. Dr. Witkowski is the BEST at what he does and he and his team make sure patients are always up to date with everything together, so we all know what is going on regarding decisions for my care.
Thank you to all my family members helping me so I wouldn’t give up. I really appreciate it, from the bottom of my heart.
The FDA should adjust the regulations to allow islet transplantation to be available all Americans still suffering and desperately needing them. It gives people like me another chance at life. This is not a drug, if someone signs up to be a donor, and life saving gift is being used for islet transplant. Do you consider a heart transplant a drug? I trust Dr. Witkowski and other experts in islets transplantation and their voice should not continue to be ignored by the FDA.
Daria and Maja
Picture from 2018.
Daria was new to her diabetes and visited Shannon to learn how to handle her insulin and keep blood glucose under control. Shannon had received previously islet and received pancreas transplant. She has been to off insulin and non diabetic again for the last 3 years!.