We’ve watched with interest as the do-it-yourself diabetes tech community has grown exponentially — from the first wave of data-sharing tools to the DIY closed loop systems that have emerged in the past year or so. The evolution’s been phenomenal, and it’s rapidly expanding from just the hard core techie types to all manner of people with diabetes.
It’s been thrilled to see the first OpenAPS system, and lots of related tools, such as Loop — an Apple-only framework and algorithm that runs on an iPhone, works with older Medtronic insulin pumps and requires a little rectangular box called the RileyLink to communicate between the pump and smartphone. It was created in large part by Minnesota D-Dad Pete Schwamb and named after his T1 daughter, Riley.
Dozens across the world are now using this version of homemade closed loop tech, and today we’re excited to share a story from a longtime type 1 for almost 60 years now (!), who recently started using one of these open-source tools. Yep, we’re talking about my own mom Judi Hoskins, diagnosed as a child in the ’50s and thriving her way to Joslin 50-Year Medalist status. Not shy about trying out the latest and greatest D-tech, she “closed the loop” late last year, and has agreed to share her thoughts on how this has all been working for her over the past two months.
You might say I’ve been living with type 1 diabetes for a while, being diagnosed in 1958 at five years old.
After so many years with T1D, you are always thinking about it. From first thing in the morning to when you go to bed, and quite a bit in between those hours. The stress had become the biggest burden, so that’s why I was interested in starting a homemade closed loop system.
That is what set me out on this journey to close the loop, and it’s been incredible over the past two months to see how much my quality of life has improved. Before getting to that point, I wanted to take a moment to talk about how everything started and what I went through in getting my RileyLink setup.
HOW I GOT STARTED
About a year ago, I started seeing more articles and information online about the OpenAPS system. Most of it went over my head, and many of those doing this seemed to be in a world all their own. But the more I read, the easier it became to understand. Since I am certainly no techie, I knew the coding wasn’t something that I’d be able to do myself, so I started searching for help.
I originally bought all the components needed for the OpenAPS system, but the coding aspect definitely turned out to be too complicated to do everything myself. After months of trying to get this set up, and finding a code-savvy person locally through mutual connections, I was at an impasse because this person didn’t know much about diabetes and wasn’t able to fully grasp the technology and I couldn’t bridge the knowledge gaps.
Then, the clouds parted.
Thanks to information passed along from the Nightscout Foundation’s hackathon held in California in October, I learned that some of the very smart people in the room felt the RileyLink was a more user-friendly way to go, with an easier setup and maintenance afterward.
So, that became my choice.
Since I’ve been an OmniPod user, choosing the RileyLink meant that I’d have to find an older Medtronic MiniMed pump (since RileyLink currently only works with Medtronic’s 722 and older models of the 723). After obtaining both a plain white pre-assembled RileyLink “brain” and an old MiniMed 722 pump, I combined that tech with my own my Dexcom G5 and iPhone 6s, and was able to get this up and running more easily than I would have thought. Also very helpful was this great eBook compiled by members of the online #WeAreNotWaiting community, who helped me get a lot of early setup questions answered, and it was much easier to follow than anything I saw relating to OpenAPS.
It wasn’t difficult to do the setup for the RileyLink. It took me a week or so with lots of help from several very nice people on the developer-coding forum Gitter to get the update on my iPhone, and the more times you do the steps to do updates, the easier it becomes.
It was Nov. 21, 2016, when I officially “closed the loop” (i.e. let the system go fully active and make dosing decisions, rather than letting it run “open loop” where it suggests treatment and let’s you decide).
I wasn’t at all nervous about starting to the looping system with a RileyLink.
Having wanted to use the OpenAPS so much and not being able to get it working, RileyLink seemed like a wonderful option when it became available to me. I’ve never been hesitant to try something new or been afraid to take a risk if I thought the outcome was worth it.
Without a doubt, the answer is a huge YES!
The outcome of looping so far has definitely been worth it for me. And yes, I do find it entertaining that it’s named RileyLink, a coincidence since my “grand-dog” is named Riley… 🙂
CALCULATING CARB ABSORPTION, ETC.
Since the Loop adjusts your insulin only by basal rate manipulation, increasing or decreasing basal rates in order to keep you within your target range, this means you still have to dose for food.
You must still count carbs and dose for the carbs, and calculate the carb absorption time. That’s one of the most difficult parts of using the RileyLink, I think.
The whole system is based on theories of carb absorption rate, which is something I didn’t have much previous experience with. When you dose for meals, you need to set the carb absorption time in addition to counting carbs. So this is a learning experience. But the nice thing is, Loop will help you if you don’t get it right. If you under-dose, the system will increase your basal rates to bring you back into range.
Before any of the actual setup was started on the Mac, I had done some pre-testing to make some determinations of different absorption rates — something that had never really been calculated for me or by me in the past. I did this testing on several days in different weeks and at different times of the day. The personal rates and information were taken off my Omnipod and transferred to my Medtronic 722 pump beforehand so I could get used to this tubed pump. The settings all seemed to work fine from one pump to the other, and at that point I was ready to take those settings and program them for my own RileyLink.
I’m still using inhaled insulin Afrezza (have been for a year now), but not as much as before looping. It works very well for me in a meal with carbs that have both a quick and longer absorption time. Taking the Afrezza at the start of the meal, and dosing for the slower absorption carbs at the end of the meal or even an hour or so later, has worked well for me, keeping a low rise and fall of my BG graph line.
Because the system is fully dependent upon an accurate CGM unit, you must trust the readings you get from the system. If that trust isn’t there, you won’t be able to believe that the loop system is doing its job. It’s nice that with looping, you really don’t look at the pump much. All dosing is done from the iPhone.
BIGGEST RILEYLINK TAKEAWAYS
From my perspective, the main advantage of Loop is not the clinical benefits as much as the improvement in day-to-day quality of life and easing up on some of the rigors of T1D management. For me, it’s brought a freedom that shouldn’t be and can’t be ignored. There is less concern over the details in daily routine.
The lessening of this burden cannot be stressed enough.
My endocrinologist agrees.
When I presented at my endo’s office in December, we spent a long time discussing the importance of lessening the stress and strain of a daily life with T1D. He is a strong believer in the great importance of quality of life and easily saw how this system would make the daily tasks simpler.
Heck, I had only been using it for two weeks at that point and thanks to RileyLink, 93% of my data was in range!
This also came into play for me right around Christmas, which was a month after closing the loop. I developed a bad case of stomach flu. I bolused for no meals for four days, simply letting loop take care of everything. Since there was little I could keep down, there weren’t many carbs to account for. Truly amazing to me, but my BG stayed between 95-110 for the duration of my illness. Wow!
Since starting on RileyLink, I’ve been able find a carrying clip case for the RileyLink so that it’s full of color, not just plain white, and a phone clip for around my neck to keep my iPhone nearby — both very handy in making sure this tech is with me at all times!
Of course, the biggest benefit of using this is the mental aspects — I don’t have to “think about my diabetes” as much as I have for many years.
For me, the best thing about the RileyLink is that after so many years with T1D, the first thing in the morning you think about doesn’t need to be diabetes. When you wake up each day, your BG is normal. You really can stop thinking of if you’re too high or too low, as you’re just in range.
All I can say is, thank you to those who’ve been a part of creating this and empowering people like me who really needed this! It’s truly a wonder and life-changing from what I have seen, something I honestly never thought I’d be around to experience for myself.
Thanks for sharing your story, Mom! Love that you’ve found something that works so well and makes life with diabetes a bit less stressful after so many years.