One year ago, I built a DIY hybrid-looping insulin pump, using my Dexcom G6 and Omnipod. For those who aren’t in the know, DIY “looping” is basically “hacking” your insulin pump with a single-board computer, such a Raspberry Pi or Riley Link, to make it communicate with an existing continuous glucose monitor (CGM) to make basal adjustments accordingly.
It’s important to note that this is NOT FDA approved, but the #WeAreNotWaiting community has been sharing information on how to build your own DIY looping insulin pump for years now, and I took the plunge in 2019.
In July I celebrated one full year on my looping system, and wanted to share my thoughts on 365 days of looping.
I Still Have Diabetes
I remember when I first set up my Riley Link and switched on “auto-mode.” I had this magical vision of never counting carbohydrates again, limitless runs without lows, and forgetting what the thirst of a high blood sugar felt like. Then I realized, just as quickly, that I still have diabetes.
Even though my Dexcom continuous glucose monitor (CGM) readings now communicate with my insulin pump and make basal adjustments accordingly, the “hybrid” part means that it doesn’t anticipate, nor account for, any carbohydrates eaten. I also need to tell my pump when I’m about to exercise, and for how long. Since the insulin pump does not operate on artificial intelligence (AI), it cannot anticipate what I’ll do next.
So yes, I still have lows on runs and I still have highs when I eat something that isn’t appropriately accounted for. I still have to count carbohydrates and no, I haven’t forgotten what the Death Valley-like thirst of a 350 mg/dL feels like, although it happens less frequently.
My HbA1c Isn’t That Much Lower
I have always been maniacal about tight diabetes control. My A1cs have hovered in the low 6s for the last 10 or so years. With Loop, I immediately thought that my control would be *perfect* and I would ride out the 4s and 5s into an eternal sunset. NOPE. My latest A1c was 5.9%, which I am rightly ecstatic about, but it’s less than 1% point lower than I was on MDI and a CGM.
The key difference is that my time in range has increased from around 30% to 75%, and the number of lows that I experience has gone down from around 3 per day to 3 per week. It’s easy to have a low HbA1c when you have highs and lots of lows to average it out- it’s much harder (and healthier!) to have a lower HbA1c with few lows. And plus, I just feel healthier. And that has made all the difference.
It’s a Mental Vacation
Being a human pancreas 24/7/365 is not easy (why didn’t anyone tell us this at diagnosis?!). In addition to running a household and having a full-time job (and texting everyone back, and maintaining some semblance of a fitness routine, and trying to eat something green at every meal), being an organ all of the time is hard work.
More than anything, a year into looping has given me the mental break I didn’t know I needed. Sure, I still have to count carbohydrates, adjust for exercise, and dose for meals, but hours can go by where I don’t think about diabetes at all, and that never used to happen. My mental distress has gone way down, and I don’t experience diabetes burnout at nearly the frequency I used to. This also helps maintain my motivation to continue to take care of myself and my diabetes.
Dosing Is More Discreet
As I make my way through my 30s, this is less of an issue (if you have a problem with me dosing in public, the problem is you, not my diabetes), but looping has definitely made checking my blood sugar (read: checking my phone) and dosing (also read: checking my phone) way more discreet in public than manually testing my blood sugar and dosing used to be. It’s also more hygienic (I change my insulin pump with plenty of alcohol swabs every 3 days from the comfort of my home), and more convenient. This is perfect when I’m out at a crowded concert, or squeezed into a small table at a restaurant.
It can also cause issues. For instance, if I’m in a public place where cell phones aren’t allowed, sometimes it’s difficult to explain that my iPhone is actually durable medical equipment (DME) that I need to survive. Let’s just say there have been some teachable moments.
I Am Happier
When I was diagnosed with type 1 diabetes in June of 2000, my doctor told me that the cure was just 5 years away. I thought the cure was just around the corner, we all did. And learning that the “cure” is still out of sight, 15 years hence, has been a hard pill to swallow.
I’ve dealt with anxiety and the impending depression of only someone who has a chronic disease with no cause and no cure can experience, but having something like Loop feels like someone is finally on my side, looking out for me, and making things just a little bit easier when the load becomes too heavy of a burden to carry. I can go to sleep and know that my basal will immediately shut off if I start to go low overnight. I can relax if I’m digging into dinner at a friend’s house and I don’t know the exact carb count for a meal, knowing my basal will tick up to cover the difference.
Having a Loop feels a little bit like you have a certified diabetes educator (CDE) and best friend just sitting on your shoulder, making constant adjustments, never judging, and ensuring that you have a better go of it, a little bit of help when you need it. And that help has been life-changing. The cure may never have been 5 years out, but with Loop, I finally feel okay waiting just a little bit longer.
Do you DIY Loop? How has your experience been? Share this post and comment below; we would love to hear from you. Follow the #WeAreNotWaiting hashtag on Twitter to learn more about the DIY movement.
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Read more about A1c, artificial intelligence, Dexcom, diabetes burnout, DIY, exercise, hybrid closed-loop, insulin, insulin pumps, Intensive management, iOS, iPhone, Loop, Omnipod, Riley Link, U.S. Food & Drug Administration (FDA).