It’s all so weird and like no other experience I’ve ever had. Lights-out exactly at 11pm and it was a mad dash to brush my teeth in time. I felt like a kid and when my Dad would count to 3 (If he got past two, you better be running). After jumping into my bed, 3 people (doctor, CDE, and researcher) hovered over me turning the Artificial Pancreas system on. My friend, and fellow AP trial participant and I kept texting each other, excited that we were finally doing this. Looking out over New York City from my bed, it hit me, the enormity of what we are participating in. We will be part of the history of testing a technology that could affect both the diabetes world, people who love someone with diabetes and how this delivery system could ultimately impact other diseases beyond diabetes. Lump in throat, tears in eyes. To think of the millions and millions of dollars people have raised, the government advocacy that brought it all to this very point, JDRF grants that were awarded to this program, and all the people who’ve supported our government’s Special Diabetes Program (Congress and Senate), is just well, awesome. Like the truest awesome that awesome could be.
When they (Mt Sinai AP team) woke up at 3am to check my blood, it wasn’t as scary as I thought it would be (although a little confusing like “where am I and how come I can hear the CDE?NP’s voice?”. 7am is the wake-up/turn off the Artificial Pancreas time. I woke up at 6:40. I looked out over the multicolored sunrise over NYC and just thought, “Wow. This is really happening.” I wanted to take photos of my morning blood glucose readings and as I got ready for the team to come into the room, I got the camera ready. I immediately saw a photo (screenshot) I took the evening before when I FaceTimed with my 1 year old youngest nephew F4 (yes his name has been changed). The photo is ridiculous and he was like a deer in headlights for a really, really long time (really long) and my youngest brother and I were cracking up as my 1 year old+ nephew refused to even move during our FaceTime “date”. As I lay in the bed, I laughed out loud looking at that photo. I thought about how hard my brother was laughing trying to get his son to do anything but F4 remained frozen. I was reminded of all the parents of newly diagnosed T1Ds I’ve spoken to over the years. I thought about how many thousands of parents will watch THEIR adorable child get thirstier and thirstier and skinnier and skinnier and not know what’s wrong and then, ultimately, they will hear the devastating news, just like my parents did when i was six years old, that their child has T1D. They will scramble to learn everything they can. They will learn a ton of terms they’ve never heard in the course of a few hours, they will fight with insurance companies, the school system, people’s prejudices and an endless stream of misinformation about diabetes.
I thought about how 3 devices next to me that make the Closed-Loop (one attached and another with attachments) are not a cure, but they are a huge upgrade. I thought about how, if this technology works, it wouldn’t eliminate the endless worry of diabetes and its complications, BUT it would alleviate some of the fears. It could prolong lives, it could curb many of the horrific “complications” connected to diabetes, it could provide a safer life with diabetes. This technology that I was currently wearing could help stabilize a disease that is never, ever stable, even under the best of circumstances.
Then members of the research team flooded into my room. They all saw me looking at F4 with tears in my eyes (and luckily I had removed my teeth grinding guard) and I was unpaired, back to open loop. Time to download all the information. I was off and running.
