Last Friday was the official end of the UNC bionic pancreas trial. Just like arm 1, we all collected at the UNC Diabetes center on Friday and got our work ups done on each of us. Around 6pm we turned all our items in, and the Boston team started crunching numbers and making fancy graphs of all the data. They had agreed to meet with each of us for a 15 minute session to go over our control on the bionic pancreas and how it compared to our normal control.
I had a pretty good 11 days of control for my normal care, probably due to all the training for the 10-mile race I ran yesterday. Running definitely does great things for my blood sugars! I wasn’t sure what to expect going into my personal meeting, but one of the trial coordinators hinted to me that they were super excited to meet me because I was an “exceptional” participant. I went into the room (which seemed to just be buzzing with energy – probably due to a large number of very smart doctors and engineers finishing up a very high profile clinical trial!) and we all introduced ourselves. I got to meet Ed Damiano, who developed the bionic pancreas and brought this entire project to fruition for his son who has type 1 diabetes, and Firas El-Khatib, who is another major investigator on this project who handled all the data in an incredibly short amount of time on Friday and made some easy-to-understand graphs to show us how our control compared between the arms.
So, how did my control compare? They first showed me my graphs, and told me that admittedly they thought they were looking at my bionic pancreas results – not my own care! They said my level of personal control was remarkably steady and that my day time and night time averages were wonderful. They actually called me wonder woman! I was very surprised by this – sure, I work VERY hard to keep my blood sugar control as in-range as possible, but no one has ever told me that it is that good. I was surprised they considered me one of “the most unique” participants in this trial of more than 90 people, because even though my HbA1C is in the mid 6% range, many diabetics are able to achieve that so I was confused why they felt I was so special. They said it’s because most diabetics who can get their HbA1C down to that level also experience many more hypoglycemic (low blood sugar) events as a trade off. They said in my 11 days on my own care, I NEVER got below 60 mg/dL at night, and had only a couple day time episodes in that range, which they felt was remarkable for a diabetic who has such a low HbA1C. But, I reminded them that to keep myself from going below 60 at night (or during the day), it takes me setting my CGM alarm to go off when I drop below 80, so I can wake up, test, eat something if I have to, etc. This results in me waking up 2-3 times every single night and constantly paying attention to where I am during the day. This is the type of life I have to live to achieve “wonder woman” status in their books! And, like I’ve said before, I didn’t always have this level of control, and there are certainly diabetics out there who work harder than me and have more out-of-range blood sugars, as well as diabetics who probably put in less effort than me and have better control. It’s a personal decision how much effort I want to put into my own care, but since I choose to put a lot of effort into this aspect of my life, I have to say it was one of the most rewarding things I’ve ever experienced to have this team of researchers basically tell me that I couldn’t be doing a better job on my own!
But, all in all, the bionic pancreas did do just a hair better than my own control – a few mg/dL lower during the day and night averages, which the team was quite proud of! =) Something else interesting is that on the pancreas I got an average of 31 units of insulin a day. On my own care I take between about 27 and 32 units per day, so they really weren’t too far off, which makes me feel more confident about my own basal rates and carb bolus ratios.
So what’s all the hype about the bionic pancreas, if my own control is “just a hair behind?” Well, for 11 days I didn’t have to wake up in the middle of the night to get a nice “flat line” of blood sugars all night long. I didn’t have to do exact carb counting all day long for every food that I eat. Sure, the bionic pancreas has some functions that need to be tweaked (like for exercise) but that will be improved on future models. It’s just unbelievable that the bionic pancreas can take over something that I probably, on average, put at least 1-2 hours of thought into every single day of my life. That’s over 400 hours of stress and inconvenience a year (10 work weeks of time!) I’d get back for my life. The pancreas would give me back my energy that I lose from almost never having a full night’s sleep. Even if my control is almost as good as the bionic pancreas, the value of that energy and time is immeasurable, and I look forward to the day, which might be only a few years away, that I will have the option to hand my control over to the bionic pancreas and regain those hours of my life.
It sounds like the next round of trials will start towards the end of 2016, and will be 3-12 months in length, and will test a “finalized” version of the pancreas – it’ll all be in a single, dual-chambered pump, the pump will have one tube with two channels in it to deliver the insulin and glucagon, and the glucagon will be a more stable form that will last 2-3 days like insulin. That’s a long trial, so I’m not 100% sure I’d be willing to commit to that but we’ll see where I am when they start recruiting and what’s going on in my life, and maybe I’d consider it. Getting to work with such awesome people on this trial truly was a treat, so that would certainly be incentive to participate again!
The data from this trial will be published towards the end of this year, and at that time I will get my full workup of my personal results which will be exciting (we can’t see it now since it is all unpublished data). It was such a cool experience to participate in this trial – frustrating and a little confusing at times, but overall very exciting and interesting, so I feel so lucky that I got to be a part of it. Thank you to my blog readers for following my experience to the end! As I said in an earlier post, if this work excites and inspires you, you can support it by donating to the Bionic Pancreas team (http://sites.bu.edu/bionicpancreas/donate/), or visiting their website to read more about the project and the next phase of development.
Thanks again for all of your support!