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 last year or so. The development’s been phenomenal, and it is quickly expanding from just the hard core techie forms to a variety of people with diabetes.
It’s been thrilled to find that the first OpenAPS system, and lots of related tools, such as Loop — an Apple-only frame and algorithm that runs on an iPhone, works with older Medtronic insulin pumps and requires a little rectangular box named that the RileyLink to communicate between the nozzle and pump. It was created in large part by Minnesota D-Dad Pete Schwamb and called after his T1 daughter, Riley.
Dozens across the world are now using this edition of homemade closed loop technician, and today we’re eager to share a story in the longtime type 1 for nearly 60 decades now (!)) , who recently started using one of those open-source tools. Yep, we’re talking about my own motherJudi Hoskins, recognized as a child in the ’50s and thriving her way to Joslin 50-Year Medalist status. Not shy about trying out the latest and best D-tech, she “closed the loop” late last year, and has agreed to share her thoughts on how this has been working for her over the last two months.
A Guest Post by Judi Hoskins (Mike’s Mother!)
You might say I’ve been living with type 1 diabetes for a while, being diagnosed in 1958 at five years of age.
After a lot of years with T1D, you’re constantly thinking about it. From first thing in the morning to when you go to bed, and quite a little between these hours. The stress had become the largest burden, so that’s why I had been interested in starting a homemade closed loop system.
That is what put me out on this journey to close the loop, and it has been incredible over the last two weeks to see just how much my wellbeing has improved. Before getting to this point, I wished to have a little time to discuss how everything began and what I went through in receiving my RileyLink installation.
How I Got Started
About a year ago, I started seeing more articles and information online about the OpenAPS system. The majority of it went over my head, and many of those doing so appeared to be in a world all their own. But the further I read, the easier it became to understand. Since I’m absolutely no techie, I understood the coding wasn’t something that I’d be able to do myself so I started looking for help.
I originally bought all of the components needed for the OpenAPS system, however, the coding aspect definitely turned out to be overly complex to do everything. After months of attempting to find this set up, and locating a code-savvy man locally through mutual relations, I had been at an impasse since this person didn’t know much about diabetes and wasn’t able to completely grasp the technology and I couldn’t bridge the knowledge gaps.
Due to information passed along in the Nightscout Foundation’s hackathon held in California in October, I learned that a number of the very smart people in the room felt that the RileyLink was a user-friendly means to go, with a simpler setup and maintenance afterward.
That became my choice.
Since I’ve been an OmniPod user, choosing the RileyLink supposed that I’d have to find an older Medtronic MiniMed pump (since RileyLink currently only operates 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 joined that technician with my own my Dexcom G5 and iPhone 6s, and managed to get this up and running more easily than I’d have believed. Also very useful was this fantastic eBook compiled by members of the internet #WeAreNotWaiting community, who helped me get a lot of early installment questions answered, and it was much easier to follow than anything I saw about OpenAPS.
It wasn’t hard to do the installation to your RileyLink. It took me a week or so with a great deal of help from several very pleasant people on the developer-coding forum Gitter to find 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 machine go completely active and make dosing decisions, rather than letting it run “open loop” in which it indicates therapy and let’s you pick).
I wasn’t in any way nervous about beginning into the playoff system with a RileyLink.
Having wanted to use the OpenAPS so much and being unable to get it functioning, 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 believed the result was worth it.
Without a doubt, the answer is a huge YES!
The result of looping so far has definitely been worth it for me. And I do find it interesting that it is called RileyLink, a coincidence since my “grand-dog” is termed Riley… 🙂
Calculating Carb Absorption, etc..
Since the Loop corrects your insulin exclusively by basal rate manipulation, decreasing or increasing basal rates in order to keep you within your target range, this means you need to dose for food.
You should still count carbs and dose for the carbs, and figure out the carb absorption period. That is among the most troublesome parts of using the RileyLink, I think.
The whole system relies on concepts of carbohydrate absorption rate, which is a thing I didn’t have much previous experience with. If you dose for foods, you want to set the carbohydrate absorption period as well as counting carbs. So this really is really a learning experience. Nevertheless, the wonderful thing is, Loop will help you if you do not get it directly. If you under-dose, the machine will improve your basal rates to bring you back to range.
Before some of the actual setup was started about the Mac, I had completed some pre-testing to make some determinations of different absorption rates — something that had never actually been computed for me or by me in the past. I did so testing on many days in various weeks and at various times of the day. The personal rates and information were removed my Omnipod and transferred to my Medtronic 722 pump beforehand so I could get used to the tubed pump. The settings all appeared to work good from 1 pump to the other, and at that point I was ready to take those configurations and program them for my own RileyLink.
I am still using inhaled insulin Afrezza (have been for a year now), but not as much as before looping. It works well for me at a meal with carbs that have both a quick and longer absorption period. Taking the Afrezza at the onset of the meal, and dosing for the reduced absorption carbs at the end of the meal or an hour or so later, has worked well for me, maintaining a low rise and drop of my BG graph line.
Because the machine is totally dependent upon an accurate CGM unit, you have to anticipate the readings you receive from the system. If this trust is not there, you will not have the ability to think that the loop process is performing its job. It is nice that with looping, you really don’t look at the pump considerably. All of dosing is done in the iPhone.
Biggest RileyLink Takeaways
From my perspective, the most important advantage of Loop is not the clinical benefits as much as the improvement in day-to-day wellbeing and easing up on some of these rigors of T1D management. For me personally, it has attracted a freedom that shouldn’t be and can’t be ignored. There is less concern over the details in daily routine.
The lessening of the burden can’t be stressed enough.
My endocrinologist agrees.
When I presented at my endo’s office in December, we invested a long time talking about the significance of reducing the stress and strain of a daily life with T1D. He’s a strong believer in the excellent significance of wellbeing and easily saw this method would make the daily tasks simpler.
I had only been using it for a couple of weeks at that stage and thanks to RileyLink, 93 percent of my information was in range!
This came to play for me right around Christmas, that was a month later closing the loop. I developed a bad case of stomach flu. I bolused for no foods for four times, simply letting loop take care of everything. Since there was little I could keep down, there were not many carbs to account for. Really amazing to mepersonally, but my BG remained between 95-110 to the duration of my illness. Wow!
Since beginning on RileyLink, I’ve managed to find a carrying clip instance for the RileyLink so it is full of colour, not just plain white, and a telephone clip for about my throat to maintain my iPhone nearby — both very handy in making sure this technician is with me at all times!
Of course, the biggest benefit of using this is that the psychological facets — I do not need to “consider my diabetes” as much as I have for many decades.
For mepersonally, the very best thing about the RileyLink is that after a lot of years with T1D, the first thing in the morning you consider doesn’t have to be diabetes. If you wake up every day, your BG is ordinary. You really can quit thinking of if you are too high or too low, as you are just in range.
All I will say is, thank you to people who’ve been part of producing this and empowering people like me that actually needed this! It is quite a wonder and life-changing from what I have observed, something I honestly never thought I’d be about to experience for myself.
Thank you for sharing your story, Mother! Love that you have found something that works so well and makes life with diabetes somewhat less stressful after a lot of decades.
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