Today, I received 49 alerts from my Tandem insulin pump app and 47 from my Dexcom continuous glucose monitor (CGM). The day before, 26 and 75. The day before that, 29 and 68. I have these two applications on my phone to manage my pump and CGM, and on some days I get more than 100 notifications from the Dexcom app alone. It makes keeping my glucose in range a tiring tightrope walk. One that I have no choice but to make, and one that I’ve been very good at for a very long time.
We had lasagna for dinner tonight, and despite measuring my serving to the gram and dosing appropriately, my sugar fell to the 40s. Sugar that low can be life threatening if not rectified quickly. I’ve had three seizures in my life stemming from low glucose, including one where I came to on a stretcher in my apartment, not remembering how I got there or what had happened. Insulin keeps my glucose in a tight range, but too much of it can also kill me.
I still remember the day I was diagnosed. I was 16, sick for a couple of days and out of school, nauseous and unable to hold down food. My aunt, a phlebotomist, came over to take my blood and bring it to the hospital where she worked. My blood glucose was dangerously high. I wouldn’t spend the rest of the day in bed watching Jerry Springer. I was to go to the emergency room at Bayshore Hospital in Holmdel, New Jersey.
I remember having to sit down on the curb at the helipad as I waited for my mother to park the car. I remember getting whisked immediately to a bed. Then finding out that the sickness that had afflicted me for the last few days was going to stick with me for the rest of my life. Several days and two different hospitals later, for the first time ever, I sat in a hospital bed and gave myself a shot. A dose for a meal, delivered into my left arm.
I’ve had to measure and guesstimate the nutritional values of every single meal I’ve had since, most of my life at this point. For more than two decades I’ve had to worry about pump tubing every time I go to the restroom or walk past a doorknob. I need to be aware of my glucose before eating, before driving, before exercising, before going to sleep. The technology has gotten better. My CGM checks my sugar every five minutes and talks to my pump, allowing an algorithm to dial my insulin dose up or down. Dexcom and Tandem have been my trusted partners for more than a decade.
But nothing is a cure. Not even close. Behind the numbers and the charts, behind the pump and the dreaded occlusion alarms, is a person. A person who never for a minute gets a break from this disease. Today I timed my infusion site change and CGM change to occur simultaneously, allowing me to shower without anything on. A joyous, brief moment of freedom. Then it was back to reality.
Truthfully, I’m tired of all of this shit.
But there now appears to be hope on the horizon that one day I can go beyond my insulin pump. That hope comes in the form of deceased donor islet cells. Pancreatic islet cells are what your body uses to make, or in my case not make, insulin. By giving a T1D patient transplanted cells, it becomes possible that their body starts producing insulin again. It is not a free ride; recipients have to take anti-rejection drugs for life, and donor cells are scarce. However, the ongoing treatment of these very human cells as a manufactured drug has helped keep the therapy out of the hands of all but a few patients.
The Department of Health and Human Services, through the FDA and the Health Resources and Services Administration, has issued a request for information titled “Improving Patient Access to Deceased Donor Islet Cells and Cell Products.” It makes sense to treat these cells as what they are, human organs. When a person donates their organs, there is no FDA approval needed to get somebody else the heart or liver they need. Diabetic patients should get the benefits of this classification as well.
The three men who held the original patent on insulin sold it to the University of Toronto for $1 apiece, $3 total, in 1923. If they could give it away essentially for free, ending what was a death sentence for people until 1922, treating deceased donor islet cells as organs might be the end of a life sentence.
I am submitting my comment in favor of expanding access to these cells, and I’m asking you to join me. Comments are due November 9 at Regulations.gov, Docket No. FDA-2026-N-10738. You can use this link to add your comment. Your help is much appreciated.
