PATIENTS

PATIENT STORIES

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!  

 
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John
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Ashley

Ashley became diabetic when was only 1 years old so   a blood glucose rollercoaster was part of her entire life.

Not anymore!  Yesterday, she received her islets transplant.

" :I have never had blood glucose like that over last 38 years!"

 said Ashley looking at her CGM next day after  her islet transplant procedure (see below).

"... they are amazing.. I am so grateful..." she added when she saw the picture of islets under the microscope.

 

Ashley is about to leave hospital in 2 days, and travel with her family for her son's hokey game next week.

 

Her islet transplantation was made possible due to the efforts of the entire team of the New Jersey Sharing Network and the family of the deceased donor, which generously offered pancreas for islet transplantation for Ashely.

We are all so grateful for that!

Ashley's story:

"...I have never known a life without diabetes. My entire life revolved around 24 hour care, starting with injections at 21 months old, leading to an insulin pump when I was 14 years old. Hypoglycemic unawareness has led me to the inability to make decisions to ensure safety for my family, hallucinations, and loss of consciousness. The anxiety, stress, & constant worry, put a huge burden on my family and restricted my freedom of getting out and enjoying life. 
 

A life without constant worry is something I’ve never experienced. Not being attached to a life saving device seemed unrealistic, until I spoke with Lindsay, Laurencia & met Dr. Witkowski and the entire transplant team. 
The day of the transplant: 

 

I was afraid, felt out of control and worried that a single decision could mess with my normal routine, a routine I have never been without. I was nervous & scared, but proceeded on putting my faith in the the transplant team. After the transplant, actually a couple of hours after the transplant, I realized that all of the stress and concern whether I was making the decision was not necessary, because I honestly have not seen numbers like this in 38 years of living with this life controlling disease! It has been an amazing experience and I give all of my thanks to Dr. Witkowski, his entire transplant team and his two wonderful assistants, Lindsay & Laurencia. The detail, the compassion, and the process was such an amazing experience. The care I received during the entire process was beyond amazing!! I want in all of this, to help others and share my experience because it has been something that every diabetic deserves. I look forward to what the future holds! "

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March 10th, 2022 Insulin was stopped completely!

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