PATIENTS
PATIENT STORIES
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
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…
HbA1c= 5.5 and still insulin independent :)
6 month insulin independence celebration
April , 2022
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.