9. Success Stories
At this point, you’ve likely seen or heard several success stories. Mine, as it related to sleep and dealing with everything my life has thrown at my diabetes. Sulka’s and his family’s reduction in the work it takes to manage their son’s diabetes. Jason’s son’s reduction in school nurse visits. Mary Anne’s dramatic reduction in A1c.
Tim Street also has a compelling way of talking about the benefits of APS. He describes the habits of diabetes, having lived with it for 30 years, and those becoming the “habits of a lifetime”. He then describes the evolution of the DIY APS community features:
“We no longer have to do everything to the nth degree, and that’s as astonishing as it is gratifying. [...] It’s not a cure but it’s the next best thing.”
In other words, diabetes is so much less work, monitoring, tracking, and everything else involved. This can be incredibly beneficial, and especially for individuals with diabetes who are children or teens.
One teen’s father has shared his son’s experience and data openly with the DIY community. It’s almost astonishing to read - his son is eating a typical teen diet of 200+ grams of carbohydrates per day. His son doesn’t want to do anything diabetes related. He doesn’t carb count or announce meals. He doesn’t bolus. And yet he’s achieving 72+% TIR and a 6.2 A1c. He spends very little time doing anything diabetes related. This is only possible because he’s using APS technology (OpenAPS) and fast-acting insulin (Fiasp): if he didn’t have access to an APS, he would either have far worse outcomes, or would have to dramatically change his lifestyle.
Katie DiSimone, a parent of a teen girl with diabetes, has also blogged about the differences before/after choosing to use an APS:
“Before DIY closed looping, school mornings were such a cluster @#$%. We had huge basal set from 5am-8am plus an extra (always a guess) bolus when she left the house to help control the school morning nerves. And then, this year, she has PE second period... oh but wait... not always second period because it might be a block day schedule. You parents know what I’m talking about... always having to stay on my toes about what day of the week it is and make sure the bolus/basal program is the right one. We regularly battled 220s in the morning using that system. Plus interrupted her school day with about 5 text messages to try to get things right. Then we got on Loop and OpenAPS... so much better. [...] We were pretty happy with this system because we no longer needed to text her, she wasn’t overdosing, and our basal switching around was no longer necessary. Win-win-win. [...] I don’t interrupt with a text message asking what it was. I don’t intervene.”
Mary Anne Patton also describes her experience in her blog:
“For me, OpenAPS has been a self-correcting system in that it’s given me enough of a feeling of control (not just BG control), that I’ve had the confidence, the breathing space, and finally, the tools, to make further changes to keep my blood sugars in range even more of the time, by adjusting my settings and modifying some of my diabetes behaviors. Before OpenAPS my data looked like a complete scramble. Now I can see patterns. And it is such a relief that finally, it isn’t just up to me”.
This stuff matters.
Diabetes is SO much more than the math – it’s the countless seconds that add up and subtract from our focus on school/work/life. And diabetes is taking away this time not just from a person with diabetes, but from our parents/spouses/siblings/children/loved ones. It’s a burden, it’s stressful... and everything we can do matters for improving quality of life. It brings me to tears every time someone posts about these types of transformative experiences, because it’s yet another reminder that this type of technology makes a real difference in the real lives of real people. It doesn’t matter if it’s DIY or commercial - it works, it makes a difference, and it matters for so many people. It enables people to recapture hours upon hours of lost and disrupted sleep and hours upon hours spent focusing on work or life without distraction or worry.
Justin Walker, another person who’s lived with diabetes for 32 years, believes that using an APS has increased his life expectancy. He also estimates that using an APS has given him back a full hour of time every day for the rest of his life.
But it’s not just highly motivated individuals with diabetes who succeed with APS technology. One public example is Cameron Chunn. He has shared that before using a closed loop (he ended up choosing to use OpenAPS), he wasn’t caring about his diabetes, even when he began to notice some related complications. It wasn’t until he had children that he decided to do something more than the bare minimum to keep himself alive.
“Suddenly my life was more than my own, and I had a responsibility to this new life that I had created. I made the decision to take care of myself. I found a new endocrinologist and switched to a pump and a CGM. I managed to lower my A1c from 10.2% to 7.7%. However, it was tons of work and I was constantly watching the CGM trying to correct highs and figure out how to not have highs, etc. It wasn’t great. I then found OpenAPS, and it changed my life. I didn’t suffer lows much anymore, and even if I screwed up I knew I’d return to normal without having to fight to do so. My A1c’s are now regularly in the 5.7-6.2% range. I still have bad days (weeks...) where sickness or something else causes my blood sugar to be bad and I can’t really control that – but I’ve gotten to a place where I understand that can’t really be helped and you are just going to have a few bad days sometimes. I’m back to not caring about diabetes. Except now I’m not killing myself in the process. I’d never tell anyone that it’s problem free, or that any of the APS tech is perfect, but the minor hassles of the day to day are miniscule compared to all the mental strain of trying to be your own pancreas. It’s 100% worth it, and I’d never go back.”
Remember this: your diabetes may (and will) vary (aka, YDMV). Your lifestyle, the phase of life you’re in, your priorities, your body and health, and your choices will ALL be different than mine and anyone else’s. That’s not bad in any way: that’s just the way it is. The behaviors I choose and the work I’m willing to do (or not do) to achieve my goals (and what my goals are), will be different than what you choose for yours. So what looks like success to me may not look like success to you – and that’s fine! What’s most important is finding out what success is for you and seeing if APS can help you achieve it. It may, or may not be, things like A1c.
When you ask someone else who’s looping (e.g. using a closed loop/APS system) what their A1c is, is that context-free number what you really want to know? Or do you really want to know how well they’re doing incorporating the technology into their lifestyle? Are you trying to figure out what you might achieve if you choose APS technology, or what’s possible? A1c is often used as a proxy for a variety of things, but it leaves out so many metrics of success that may be equally – or even more – important to someone. That’s why I encourage people not to try to compare themselves, or compare others, because it’s definitely not going to be equal even with the same, single metric like A1c. It’s also important to keep this in mind when reviewing research about APS technology. You need to know what target the system was targeting, what settings they were using, what behaviors they were using, how much and how they were monitoring and intervening with the system, their level of activity or inactivity, and how other behaviors might vary and influence the system.
