It really did happen, I was in an Artificial Pancreas clinical trial. I got to test a future technology, a technology that is currently unavailable for use except for in clinical trials. During the trial I wore a Roche pump, 2 Dexcom G4s (on abdomen only) and from 11pm until 7am, for 5 nights, the “loop” was closed and a series of algorithms via a DiAs (diabetes assistant) controlled how much insulin I received. Going into the clinical trial, I knew there would be a “down” at the end of this. If it worked for me, with me, and then having to walk away from it and wait–that would be the hardest part.
Those feelings were as I’d envisioned.
The actual trial was a tough schedule. Learning a new pump, all the at-home data collection, following a lot of rules to ensure the accuracy of the data collected both for the at home open loop, and the in the trial closed loop had its challenges. There were certainly moments where I wondered, “what have I gotten myself into.” During the closed loop, I was on an alien schedule. running sprints at 10pm to bring my blood glucose down one night (weird), and 3am blood glucose checks (and hand washing) was rather surreal. I’ll admit it, I was a bit relieved to get back to a more normal life and routine.
Last week was my first full week back to my old schedule. I went to bed with a blood glucose in the 140s. In a matter of hours, I skyrocketed to 289. I hadn’t eaten something mysterious for dinner, no adrenaline rush, nothing “predictable” (as though one can even say that about diabetes). I must have slept through the Dexcom alarm a few times and woke up at 289. I did a blood glucose check. It was like I was in the AP trial all over again except a doctor and CDE and researcher weren’t waking me up with a flashlight at 3am handing me a wet wash cloth to wipe my hands and scribbling down notes as I pricked my finger. So I took a correction. I dropped. I woke up to my phone alarm. I treated a low as I rushed to get into the shower.
Almost the same thing happened the next night. Bedtime bg in range, late night spike that wouldn’t budge for hours, lots of Dexcom alarms, went low during morning shower and cried in frustration.. THIS moment I thought was the eye opener. I know there’s another version of this story where I go to sleep on the AP and these overnight and morning glucose readings don’t happen. I have seen it. I have used it. I know how it works.
I was wrong, there would be more. Last Wednesday I changed my pump site right after dinner. During the study, I had to be in bed at exactly 11pm for the loop to be CLOSED and I’ve been going to bed early ever since. I woke up at 2am with a blood glucose of 41. Yes, that is also my age. (My blood glucose should NEVER be my age unless I’m a very old lady.) But I was more than just low. I looked at the Dexcom. I’d been in the red for awhile. I was 41. I reached for the Glucolifts. There were 2 left in the bottle and I definitely needed more than 2. I chewed and something happened that hasn’t happened in many, many years (I actually can’t remember the last time it happened). I just didn’t know what else to do. Feeling lost, I ransacked my purse while lying in bed. I should have known there were apple sauce pouches in the refrigerator. I knew the fridge was a few mere feet away (This is New York City. I don’t have space). I needed to do something, but I just couldn’t figure out what. I kept looking in the empty Glucolift container. Still empty. Then, the sweating started and within seconds, my forehead was drenched. I kept thinking about a facial I got on a birthday trip in Hawaii. I needed food and I was thinking about relaxing in Hawaii…? Low and wrapped in more blankets. My bg stayed in the 50’s. I needed sugary carbs. Instead, I stayed awake in my bed, freezing in my wet clothes. The Dexcom kept buzzing. I got up, finally, grabbed and inhaled one of those applesauce packets. My bg finally went up a tad and then, more sweating. I wanted to move up to the top bunk bed. Nope, I don’t even have bunk beds. I found a somewhat dry spot and slept. I woke to the Dexcom just grazing the low line again.
When T1Ds talk about having a low hangover, I don’t usually relate. This time I did. My head was pounding the next morning. I stared at the Dexcom receiver. I saw the low(s). I felt scared and a sense of loss. My reactionary instincts to a low were off. That’s terrifying. I got in the shower. Exhausted. Yep, a scary low but, the sadder part, was that I know what it’s like to be on the AP and be in range the entire night. A low like 41, overnight, is (thankfully) rare for me. I have plenty of nights where my bg does indeed stay in range and am grateful for both my pump and CGM BUT, a3 nights of extreme and inconsistent glucose swing could have been caught by the Artificial Pancreas. THIS very situation is why I think it’s crucial for me to talk and share my AP experience.
What I tested as a lab mouse was a series of algorithms, and although I understand how this actually works, much better than I once did, it’s still way over my head. And THAT, is the hardest part of being in an Artificial Pancreas clinical trial. You don’t WONDER what it would be like anymore, you KNOW what it is like. And you want it. You really, really want it.
Thank you for sharing your experiences with us Alecia. The fight will be constant, we can not give up.
Alecia, I didn’t get the chance to respond to this until now. Just wanted to say THANK YOU for participating in this trial. I believe the success that will eventually be achieved is worth everything you had to endure, even if it was difficult. So again: Thank You.
A, sorry to hear about your overnight mishaps, but thanks to you we are all closer to an AP reality… You’re stronger than you think… Soldier on…
oh alecia, i am so sorry it is back to sucky real life. Thank you for sharing the ups AND downs with us. love ya girl