LOOPed and loving it!
~ originally published by insulinpumps.ca, November ‘18
Looping is achieved through the use of a do-it-yourself hybrid closed loop artificial pancreas setup using an insulin pump (Medtronic), a continuous glucose monitor (Dexcom), an RL communicator (RileyLink — named after the T1D daughter of its genius creator) and compatible smart phone (iPhone). It’s an automated insulin delivery system based on blood glucose readings taken every five minutes, 24 hours a day. For the techies reading this, “Loop predicts future glucose based on basal-rate schedules, carbohydrate intake, insulin on board, and current CGM readings. These glucose forecasts provide Loop with the information needed to recommend a temporary basal rate to attain a targeted glucose range in the future.” (Loop Docs) In plain English, the system uses the blood sugar readings from a CGM sensor to send information to an insulin pump, which then prompts the pump to give the user more or less insulin, based on the desired BG ranges set — pretty much exactly what a ‘normal’ pancreas is supposed to do — with minimal manual manipulation required by the user.
On May 1st, 2018, I started Looping. When I say that to friends and family they look at me like I have three heads and usually reply with some witty comeback like, ‘well, that’s what tends to happen to people with so much on their plate’, or ‘so you’ve finally lost it, altogether, have ya?’. They say these things in jest, of course, but there is always a hint of truth to it at the same time. I am busy. I’m always busy. I’ve been busy all my life, but I’ve been busier than ever in the last five years, after my daughter’s T1D diagnosis. Since then, I’ve joined multiple forums, social media groups and I’ve even gone back to university full-time at 45 years of age to become a registered dietitian in an effort to learn everything I can to ensure the best available treatment plans and management strategies for her. My goal is to establish a T1D support centre that will offer programs and services - including ME as the resident registered dietitian - along with other activities, advocacy, awareness, education, public speaking and technology opportunities and workshops. It’s through these efforts that I found out about and learned how to LOOP. Game changer! Full stop.
I was diagnosed with T1D, myself, in June of 1998 (20+ years ago). I went to my regularly scheduled appointments and followed up with blood work, eye doctors and endocrinologist check-ins to ensure that my organs were still cooperating with me, but I never invested in my diagnosis. I’ve been lucky, because I’ve actually spent most of the last 20 years ignoring my diagnosis with little to no ramifications to my health. It wasn’t until my daughter was diagnosed that I took notice, became motivated, inspired and educated about Type 1 Diabetes, the new technologies in the works and research being done on various treatments — each striving to provide a CURE. Because of her diagnosis, I tripped over the #wearenotwaiting movement that introduced me to Nightscout (www.nightscout.info), which I’ve written about in another blog post that you can find here. Long story, shorter… Nightscout not only led me to Loop, but also to a full 3 point drop in my A1c in just one short month. MAGIC! What is Loop, exactly, you ask? Let me explain…
I closed the Loop on May 1st with an A1c of 10.1%. By mid-month, my A1c dropped to 8.4%. By the end of June, my A1c results came back at 7.5%. Today, I’m tracking at 7% and I’ve done almost nothing to achieve this result. I have ‘plateaued’, for now, and will have to pick up the slack to get myself under 7%, but the achievement of dropping my A1c by 3 points in 2 months is so inexplicably rewarding and the reduction in stress and worry about impending health consequences of sub-optimal management over the years is a thing of the past. Simply AH.MAY.ZING!
The app is really easy to use and offers so much more information than industry solutions currently provide. As T1s, having so much information at our fingertips is instrumental in helping to tighten our BG control and get a better understanding about how we are affected by different things… exercise, foods, stress, etc. Here’s a quick look at the Loop app screen…
PROS of using Loop:
You actually get sleep!
Looping is PROactive, compared to reactive solutions available on the market.
A1c results have dropped in all reported instances of T1s using Loop. Loopers are getting better BG control with less effort.
Looping takes A LOT of the thinking out of T1D management.
Looping adds an extra level of protection overnight and reduces low BGs.
There’s no 2-hour warm up requirement for newly inserted sensors. You’re off and running immediately after the initial calibration.
Loop will help control BG spike if you ‘forget’ to bolus for a meal or snack (not recommended to replace bolusing for foods ingested).
More stability with overnight BGs.
More flexibility for tweaking and precision as compared to other systems on the market (e.g. Medtronic 670g).
The app is easy to use and there is so much more information readily available.
There is an online Looping community (Looped) that is 5,000+ members strong and growing. Because this is a global community, there is usually always someone up and ready to help out with questions.
Loved ones can monitor your BGs from afar, giving you an added layer of support and comfort, reducing anxiety, stress and worry.
Looping is potentially tens of thousands of dollars more affordable than any system currently available on the market.
CONS of using Loop:
There is a learning curve when migrating to Loop. You have to be prepared to do things a little differently and TRUST THE SYSTEM.
Loop currently only works with iOS software (iPhone).
Due to software requirements, you need to find an old Medtronic pump. As the Looping community grows, the availability of older pumps decreases (the developers are working on an Omnipod solution — TBA).
You need to have a Dexcom CGM to use Loop. Depending on coverage, the cost of this technology and its supplies can be quite costly.
Sensors are not always 100% reliable. Loop can only work off information provided by the CGM sensor. If the sensor is inaccurate Loop will be, too.
Data degrades over time, so those who have grown accustomed to ‘stretching sensors’ for maximum value, will have to revert to changing them more frequently to ensure the highest accuracy when Looping.
Monitoring, calibrations and bolusing for meals is still required. You must enter in any periods of exercise, any carb counts for foods eaten and at least one BG meter result per day to make sure you’re working with accurate information.
The system is not something that you can purchase from a manufacturer. It requires work to install, support to use and equipment to purchase.
Technology isn’t perfect. Glitches happen, and when they do, Looping is interrupted and requires attention and troubleshooting to get back online.
Use at your own risk! Looping is not legislated, officially supported or warrantied. All Loopers must take full responsibility for building and running this system.
You may not always get the answer you want, exactly when you want it. This management option is developed an supported by a wonderfully generous group of volunteers who work tirelessly to help other T1Ds out of the goodness of their hearts, on their own personal time.
There are more than 800 D-I-Y closed loop users across the globe with over 5 million “looping” hours logged who have reported median A1c results dropping from 7.1% to 6.2% and a percent time-in-range increase from 58% to 81%. More than half of the users reporting a significant increase in both amount and quality of sleep (OpenAPS Outcomes). As you become more familiar with Loop, there are opportunities to become a more advanced user allowing you to delve deeper into program coding and settings to increase the benefit of the system. The documentation is super user-friendly, easy to follow and has been translated into Spanish, Norwegian, German, Russian, Dutch, Chinese, and Italian, with French and Swedish soon to follow.
Looping has changed my life. It’s given me my life back, boosted my attitude and restored my faith that I will live to experience a life void of all I’ve been plagued with over the past 20 years, thanks to T1D. I am especially excited about the potential for opportunities in the near future, given that technologies have pushed management options for T1D by leaps and bounds in the last five years, alone. I am open to considering any and all future options provided by industry and agency that will give my daughter a better quality of life as she enters into her teenage years, but am totally ‘pumped’ to get her Looping, for now, since I’ve been so successful in working out most of the kinks on myself. I will never look back. #wearenotwaiting
Kristen Garland, RD, MAN, Pn1
dx June ‘98, pump and CGM user since ‘03, LOOPed since ’18
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