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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Mackenzie

Mackenzie received islets transplant and 2 months later stopped taking insulin completely!!!

".... it like sort of  a divine intervention had taken place...."

 

 

Congratulation!

3 weeks after the Islet Transplant- still on some insulin to let islet recover 

 

"The most mine blowing day of my recovery took place last week when I ordered pizza. I suppose the ritual for those normal pancreas folks is to open the lid and fearlessly dig in. But up until a few days ago pizza was an EVENT for me to prepare for, and not one I’d recommend. First I’d prep by eating low carb all day, then make sure blood sugars were less that 150 an hour before dinner, I’d load up a gallon of insulin, eat one slice (maybe two if I felt feisty), then continually check blood sugars every hour until I got to bed, making corrections as needed. 

 

My islet cell transplant has proven that ordering pizza really can be the relaxing Friday night meal I’ve craved. Immediately after the inter portal transplant my blood sugars dropped like some sort of divine intervention had taken place. With only 0.5 units an hour from my pump, this serene feeling hasn’t gone away since. My blood sugars still have yet to reach anything near my once regular hypos and hypers. The new water cooler conversations go something like, “Soooooo you just eat whatever and don’t think about your body’s reaction?” I’m simply in awe of what my body and these tiny islets can do together. I’m a 25-year type 1 veteran and this is the first time I’ve ever allowed myself to think, “What’s life going to be like without diabetes?” 

 

 

 

Be well,

Mackenzie 

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Nov 30th, 2021                    

 

Off insulin! A Victory Day!

 

A week ago Mackenzie stopped her insulin support completely.

 

Few days later, she passed her “Ultimate Thanksgiving Turkey Test”, blood glucose remained at 98 after her Thanksgiving dinner.

Yesterday, she came to UChicago Clinic and passed her standardized Mix Meal Tolerance Test. Without any insulin her blood glucose raised only to 133 and appropriately went down.  She could not believe it and most likely still trying to comprehend that…

 

On her flight back home, she shared her joy with a random passenger who turned out to be …an endocrinologist... he started weeping…

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HbA1c= 5.5 and still insulin independent :)

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6 month insulin independence celebration

March 2022

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Mackenzi about taking immunosuppression medications:

 

There’s a ridiculous movie from my teenage years called “Bubble Boy.” In it, the main character has a compromised immune system and struggles to navigate life in an inflatable plastic bubble while stupidity and hilarity ensue. This movie was one of the first things that came to mind when I learned that the islet transplant trial would require a life on immunosuppression drugs. That… and chemo patients.

 

The latter in particular instigated a bit of nerves. It scared my family. My friends asked me if such a transplant would be “worth it.” To be completely honest, I simply decided not think about it. I blocked out thoughts of the sick and feeble and instead focused on “lowering the white blood cell count to the bottom of the normal range” - not only accurate but also a more white glove kind of phrase supplied by the transplant team. This thinking allowed me to continue through the trial with a better sense of calm and I’m proud of the resolve I was able to steal as things progressed.

 

Now post transplant, immunosuppression has not made me frail or fragile. I do not live in an inflatable plastic bubble. I just take a few pills and live responsibility by washing my hands regularly, sneezing into my elbow, getting the flu shot, and all the other things I teach my young nieces and nephews. Since acclimating to the prescriptions, I don’t feel particularly fatigued, experience any adverse side effects, or get sick easily. My GP even refused to skip me to the front of the Covid vaccine line when it was first released saying I was “too healthy” to rank ahead of essential workers and the elderly. As far as the question of “is it worth it?” goes, I can confidently say, HELL YES.