I am so privileged to be able to take part in the Beacon Hill Bionic Pancreas Study with Mass General Hospital and I thought I’d take the time to share, each day, my personal experiences throughout the study with you, the Glu community!
Many in-patient studies on the bionic pancreas have done in the past but this study is unique because, as an outpatient study, I’m allowed to go about my life as I normally would (other than the fact that a nurse accompanies me everywhere I go during the day and I stay in a hotel at night). You can learn a little more about the study here.
Technically today is day 2 but it is the first full day I am experiencing it all, so here we go!
I left my office in downtown crossing area around 4pm yesterday, checked in at the hotel in Beacon Hill where I’ll be staying until Sunday night, and waited to be “hooked up.” Now, I’ve been using an insulin pump for nearly 11 years and a sensor for over 3, so having an extra infusion set or two didn’t seem so bad. I knew, at the outset, I was getting myself into something, but I had no idea how amazing yet overwhelming this whole experience was going to be.
Although I grew up in Boston, the backyard of the best diabetes clinical and research institutions worldwide, I never chose to participate in clinical trials. I felt I was already my own clinical trial. I mean diabetes has a mind of its own and I “trial and error” each and every hour of every day with carb counts and corrections that a trek into Boston for a $25 gift card didn’t seem worth it.
However, when I heard about the opportunity to be a part of history, and wear a device that was completely out of my manual control, yet monitored by MGH staff and principal investigators I thought I might give it a go.
At 6pm I hit “start closed loop” on the iPhone, clipped myself into the glucagon and insulin T:slim infusion sets said goodbye to my pump for 5 days. The best part so far has certainly been the lack of worry, emotional guilt, and shame that accompany all of us too often when it comes decision making between me and my “external organ” pump that I’ve had a solid relationship with for over a decade. The not so fun part was the IV that was placed in my arm around 10pm last night after an hour of vein poking, which was meant to eliminate a nurse from pricking my finger every 30 minutes while I slept. Well, I didn’t sleep. I think I would have much preferred the every 30-minute prick over the hospital like atmosphere my hotel room started to mimic.
I woke up to beeping of the “Gluco-scout” IV station that was placed just inches from my tired head, vibration of either of the 2 pumps, now attached to me via a fanny pack style spy belt clipped to my pjs, and the head lamp of the night shift nurse who periodically came to check my line in the IV covered by a 6 inch ace bandage eliminating much movement of my left arm for rotating sleeping positions… ugh.
All in all, the study is going well. I was able to go to the hotel gym this morning and exercise free of temp basals, suspensions, and juice boxes. I went to Starbucks and ate a banana for breakfast without fear of not enough time having passed between bolus and food consumption and wondering whether or not the 20 min brisk walk to work would drop my blood sugar in 2 hours!
I am so thankful for this opportunity and can’t wait to continue to see what really goes on inside and share it with the diabetes community. I hope you’ll all follow me on this journey!
Read about day 2 of Anna’s journey here.