Presentations and poster content from @DanaMLewis at #2018ADA

DanaMLewis_ADA2018As I mentioned, I am honored to have two presentations and a co-authored poster being presented at #2018ADA. As per my usual, I plan to post all content and make it fully available online as the embargo lifts. There will be three sets of content:

  • Poster 79-LB in Category 12-A Detecting Insulin Sensitivity Changes for Individuals with Type 1 Diabetes using “Autosensitivity” from OpenAPS’ poster, co-authored by Dana Lewis, Tim Street, Scott Leibrand, and Sayali Phatak.
  • Content from my presentation Saturday, The Data behind DIY Diabetes—Opportunities for Collaboration and Ongoing Research’, which is part of the “The Diabetes Do-It-Yourself (DIY) Revolution” Symposium!
  • Content from my presentation Monday, Improvements in A1c and Time-in-Range in DIY Closed-Loop (OpenAPS) Users’, co-authored by Dana Lewis, Scott Swain, and Tom Donner.

First up: the autosensitivity poster!

Dana_Scott_ADA2018_autosens_posterYou can find the full write up and content of the autosensitivity poster in a post over on OpenAPS.org. There’s also a twitter thread if you’d like to share this poster with others on Twitter or elsewhere.

Summary: we ran autosensitivity retrospectively on the command line to assess patterns of sensitivity changes for 16 individuals who had donated data in the OpenAPS Data Commons. Many had normal distributions of sensitivity, but we found a few people who trended sensitive or resistant, indicating underlying pump settings could likely benefit from a change.
2018 ADA poster on Autosensitivity from OpenAPS by DanaMLewis

 

Presentation:
The Data behind DIY Diabetes—Opportunities for Collaboration and Ongoing Research’

This presentation was a big deal to me, as it was flanked by 3 other excellent presentations on the topic of DIY and diabetes. Jason Wittmer gave a great overview and context setting of DIY diabetes, ranging from DIY remote monitoring and CGM tools all the way to DIY closed loops like OpenAPS. Jason is a dad who created OpenAPS rigs for his son with T1D. Lorenzo Sandini spoke about the clinician’s perspective for when patients come into the office with DIY tools. He knows it from both sides – he’s using OpenAPS rigs, and also has patients who use OpenAPS. And after my presentation, Joyce Lee also spoke about the overarching landscape of diabetes and the role DIY plays in this emerging technology space.

Why did I present as part of this group today? One of the roles I’ve taken on in the last few years in the OpenAPS community (among others) is a collaborator and facilitator of research with and about the community. I put together the first outcomes study (see here in JDST or here in a blog post form on OpenAPS.org) in 2016. We presented a poster on Autotune last year at ADA (see here in a blog post form on OpenAPS.org). I’ve also worked to create and manage the OpenAPS Data Commons, as well as build tools for researchers to use this data, so individuals can easily and anonymously donate their DIY closed loop data for other research projects, lowering the friction and barriers for both patients and researchers. And, I’ve co-led or led several research projects with the community’s data as a result.

My presentation was therefore about setting the stage with background on OpenAPS & how we ended up creating the OpenAPS Data Commons; presenting a selection of research projects that have utilized data from the community; highlighting other research projects working with the OpenAPS community; announcing a new international collaboration (OPEN – more coming on that in the future!) for research with the DIY community; and hopefully encouraging other diabetes researchers to think about sharing their work, data, methods, tools, and insights as openly possible to help us all move forward with improving the lives of people with diabetes.

That is, of course, quite an abbreviated summary! I’ve shared a thread on Twitter that goes into detail on each of the key points as part of the presentation, or there’s a version of this Twitter/presentation content also written below.

If you’re someone who wants to do research with retrospective data from the OpenAPS Data Commons, you can find out more about it here (including instructions on how to request data). And if you’re interested in prospective research, please do reach out as well!

Full content for those who don’t want to read Twitter:

Patients are often seen as passive recipients of care, but many of us PWDs have discovered that problems are opportunities to change things. My journey to DIY began after I was frustrated by my inability to hear CGM alarms at night. 4 years ago, there was no way for me to access my own device data in real time OR retrospectively. Thanks to John Costik for sharing his code, I was able to get my CGM data & send it to the cloud and down to my phone, creating a louder alarm. Scott and I created an algorithm to push notifications to me to take action. This was an ‘open loop’ system we called #DIYPS. With Ben West’s help, we realized could combine our algorithm with small, off-the-shelf hardware & a radio stick to automate insulin delivery. #OpenAPS was thus created, open sourcing all components of DIY closed loop system so others could close the loop, too. An #OpenAPS rig consists of a small computer, radio chip, & battery. The hardware is constantly evolving. Many of us also use Nightscout to visualize our closed loop data, and share with loved ones.

I closed the loop in December of 2015. As people learned about it, I got pushback: “It works for you, but how do you know it’s going to work for others?” I didn’t, and I said so. But that didn’t mean I shouldn’t share what was working for me.

Once we had dozens of users of #OpenAPS, we presented a research study at #2016ADA, with 18 individuals sharing outcomes data on A1c, TIR, and QOL improvements. (See that publication here: https://twitter.com/danamlewis/status/763782789070192640 ). I was often asked to share my data for people to analyze, but I’m not representative of entire #OpenAPS community. Plus, the community has kept growing: we estimate there are more than (n=1)*710+ (as of June 2018) people worldwide using different kinds of DIY APs. (Note: if you’d like to keep track of the growing #OpenAPS community, the count of loopers worldwide is updated periodically at  https://openaps.org/outcomes ).  I began to work with Open Humans to build the #OpenAPS Data Commons, enabling individuals to anonymously upload their data and consent to share it with the Data Commons.

Criteria for using the #OpenAPS Data Commons:

  • 1) share insights back with the community, especially if you find something about an individual’s data set where we should notify them
  • 2) publish in an accessible (and preferably open) manner

I’ve learned that not many are prepared to take advantage of the rich (and complex) data available from #OpenAPS users; and many researchers have varying background and skillsets.  To aid researchers, I created a series of open source tools (described here: http://bit.ly/2l5ypxq, and tools available at https://github.com/danamlewis/OpenHumansDataTools ) to help researchers & patients working with data. We have a variety of research projects that have leveraged the anonymously donated, DIY closed loop data from the #OpenAPS Data Commons.

  • One research project, in collaboration with a Stanford team, evaluated published machine learning model predictions & #OpenAPS predictions. Some models (particularly linear regression) = accurate predictions in short term, but less so longer term when insulin peaks. This study is pending publication, but I’d like to note the challenge of more traditional research keeping pace with DIY innovation: the code (and data) studied was from January 2017. #OpenAPS prediction code has been updated 2x since then.
  • In response to the feedback from the #2016ADA #OpenAPS Outcomes study we presented, a follow up study on #OpenAPS outcomes was created in partnership with a team at Johns Hopkins. That study will be presented on Monday, 6-6:15pm (352-OR).
  • Many people share publicly online their outcomes with DIY closed loops. Sulka Haro has shared his script to evaluate the reduction in daily manual diabetes interventions after they began using #OpenAPS. Before: 4.5/day manual corrections; now they treat <1/day.
  • #OpenAPS features such as autosensitivity automatically detect sensitivity changes and insulin needs, improving outcomes. (See above at the top of this post for the full poster content).
  • If you missed it at #2017ADA (see here: http://bit.ly/2rMBFmn) , Autotune is a tool for assessing changes to basal rates, ISF, and carb ratio. Developed for #OpenAPS users but can also be used by traditional pumpers (and some MDI users also utilize it).

I’m also thrilled to share a new tool we’ve created: an #OpenAPS simulator to allow us to more easily back-test and compare settings changes & feature changes in #OpenAPS code.

  •  We pulled a recent week of data for n=1 adult PWD who does no-bolus, rough carb entry meal announcements, and ran the simulator to predict what the outcomes would be for no-bolus and no meal-announcement.
  • We also ran the simulator on n=1 teen PWD who does no-bolus and no-meal-announcement in real life. The simulator tracked closely to his actual outcomes (validated this week with a lab-A1c of 6.1)

The new #OpenAPS simulator will allow us to better test future algorithm changes and features across a diverse data set donated by DIY closed loop users.

There are many other studies & collaborations ongoing with the DIY community.

  • Michelle Litchman, Perry Gee, Lesly Kelly, and myself have a paper pending review analyzing social-media-reported outcomes & themes from DIY community.
  • There are also multiple other posters about DIY outcomes here at #2018ADA:
    • See 973-P on learning curves in DIY AP (Crocket);
    • 964-P on real-world outcomes (Choi et al);
    • and 993-P on #OpenAPS outcomes in Italy (Tonolo et al).
  •  There are many topics of interest in DIY community we’d like to see studies on, and have data for. These include: “eating soon” (optimal insulin dosing for lesser post-prandial spikes); and variability in sensitivity for various ages, pregnancy, and menstrual cycle.
  • I’m also thrilled to announce funding will be awarded to OPEN (a new collaboration on Outcomes of Patients’ Evidence, with Novel, DIY-AP tech), a 36-month international collaboration assessing outcomes, QOL, further development, access of real-world AP tech, etc. (More to come on this soon!)

In summary: we don’t have a choice in living with diabetes. We *do* have a choice to DIY, and also to research to learn more and improve knowledge and availability of tools for us PWDs, more quickly. We would love to partner and collaborate with anyone interested in working with the DIY community, whether that is utilizing the #OpenAPS Data Commons for retrospective studies or designing prospective studies. If you take away one thing today: let it be the request for us to all openly share our tools, data, and insights so we can all make life with type 1 diabetes better, faster.

A huge thank you as always to the community: those who have donated and shared data; those who have helped develop, test, troubleshoot, and otherwise help power the #OpenAPS and other DIY diabetes communities.

Presentation:
Improvements in A1c and Time-in-Range in DIY Closed-Loop (OpenAPS) Users

(Note: This will be updated with content from the presentation, and also a link to a Twitter thread, after the presentation on Monday evening.)

Getting ready for #2018ADA (@DanaMLewis) & preparing to encourage photography

We’re a few weeks away from the 78th American Diabetes Scientific Sessions (aka, #2018ADA), and I’m getting excited. Partially because of the research I have the honor of presenting; but also because ADA has made strides to (finally) update their photography policy and allow individual presenters to authorize photography & sharing of their content. Yay!

As a result of preparing to encourage people to take pictures & share any and all content from my presentations, I started putting together my slides for each presentation, including the slide about allowing photography, which I’ll also verbally say at the start of the presentation. Interestingly to me, though, ADA only provided an icon for discouraging photography, saying that if staff notice that icon on any photos, that’s who will be asked to take down photos. I don’t want any confusion (in past years, despite explicit permission, people have been asked to take down photos of my work), so I wanted to include obvious ‘photography is approved’ icons.

And this is what I landed on for a photography encouraged slide, and the footer of all my other slides:

Encouraging photography in my slides Example encouraging use of photography in content slidesEncouraging photography in the footer of my slides

And, if anyone else plans to encourage (allow) photography and would like to use this slide design, you can find my example slide deck here that you are welcome to use: http://bit.ly/2018ADAexampleslides

I used camera and check mark icons which are licensed to be freely used; and I also licensed this slide deck and all content to be freely used by all! I hope it’s helpful.

Where you’ll find me at #2018ADA

And if you’re wondering where and what I’ll be presenting on with these slides…I’ll be sharing new content in a few different times and places!

On Saturday, I’m thrilled there is a full, 2-hour session on DIY-related content, and to get to share the stage with Jason Wittmer, Lorenzo Sandini, and Joyce Lee. That’s 1:45-3:45pm (Eastern), “The Diabetes Do-It-Yourself (DIY) Revolution”, in W415C (Valencia Ballroom). I’ll be discussing some of the data & research in DIY diabetes! A huge thanks to Joshua Miller for championing and moderating this session.

I’m also thrilled that a poster has been accepted on one of the projects from my RWJF grant work, in partnership with Tim Street (as well as Scott Leibrand, and Sayali Phatak who is heading our data science work for Opening Pathways). The embargo lifts on Saturday morning (content will be shared online then), and the poster will be displayed Saturday, Sunday, and Monday. Scott and I will also be present with the poster on Monday during the poster session from 12-1pm.

And last but not least, there is also an oral presentation on Monday evening with a new study on outcomes data from using OpenAPS. I’ll be presenting during the 4:30-6:30pm session (again in W415C (Valencia Ballroom)), likely during the 6-6:15pm slot. I’m thrilled that Scott Swain & Tom Donner, who partnered on this study & work, will also be there to help answer questions about this study!

As we have done in the past (see last year’s poster, for example), we plan to share all of this content online once the embargo lifts, in addition to the in-person presentations and poster discussions.

A huge thanks, as always, goes to the many dozens of people who have contributed to this DIY community in so many ways: development, testing, support, feedback, documentation, data donation, and more! <3

Exploring other sensors that could be used with #OpenAPS and for diabetes in general

Nobody appeared to notice the other day when I tweeted about going through airport security with 13 pieces of adhesive on my body. Which is amusing to me, because normally I sport two: my insulin pump site, and my continuous glucose monitor (CGM) sensor. That particular day, I added another diabetes-related piece of adhesive (I was giving the Freestyle Libre, a flash aka not quite continuous glucose monitor, a try), and 10 pieces of adhesive not directly related to diabetes. Or maybe, it will be in the future – and that’s what I’m trying to figure out!

Last fall, my program officer from RWJF (for my role as PI on this RWJF-funded grant – read more about it here if you don’t know about my research work) made an introduction to a series of people who may know other people that I should speak to about our project’s work. One of these introductions was to a researcher at UCSD, Todd Coleman. I happened to be in San Diego for a meeting, so my co-PI Eric Hekler and I stopped by to meet Todd. He shared about his lab’s work to develop an ambulatory GI sensor to measure gastric (stomach) activity and my brain immediately started drooling over the idea of having a sensor to better help assess our methods in the DIY closed looping community for articulating dynamic carb absorption, aka how slow or fast carbs are absorbing and therefore impacting blood glucose levels. I took over part of the white board in his office, and started drawing him examples of the different data elements that we have #OpenAPS (my DIY hybrid closed loop “artificial pancreas”) calculate every 5 minutes, and how it would be fantastic to wear the GI sensor and graph the gastric activity data alongside this detailed level of diabetes data.

I immediately was envisioning a number of things:

  • Assessing basic digestion patterns and figuring out if the dynamic carb absorption models in OpenAPS were reasonable. (Right now, we’re going off of observations and tweaking the model based on BG data and manual carb entry data from humans. Finding ways to validate these models would be awesome.)
  • Seeing if we can quantify, or use the data to better predict, how post-meal activity like walking home after dinner impacts carb absorption. (I notice a lot of slowed digestion when walking home from dinner, which obviously impacts how insulin can and should be dosed if I know I’ll be walking home from dinner or not. But this is something I’ve learned from a lot of observation and trial and error, and I would love to have a more scientific assessment of this impact).
  • Seeing if this could be used as a tool to help people with T1D and gastroparesis, since slowed digestion impacts insulin dosing, and can be unpredictable and frustrating. (I knew gastroparesis was “common”, but have since learned that 40-50% of PWDs may experience gastroparesis or slowed digestion, and it’s flabbergasting how little is talked about in the diabetes community and how few resources are focused on coming up with new strategies and methods to help!)
  • Learning exactly what happens to digestion when you have celiac disease and get glutened.
  • Etc.

Fast forward a few months, where Todd and his post-doctoral fellow Armen Gharibans, got on a video call to discuss potentially letting me use one of their GI sensors. I still don’t know what I said to convince them to say yes, but I’m thrilled they did! Armen shipped me one of the devices, some electrodes, and a set of lipo batteries.

Here’s what the device looks like – it’s a 3D printed gray box that holds an open source circuit board with connectors to wearable electrodes. (With American chapstick and unicorn for scale, of course.)

DanaMLewis EGG for scale

And here’s what it looked like on me:

DanaMLewis wearing an ambulatory EGG

The device stores data on an SD card, so I had many flash backs to my first OpenAPS rig and how I managed to bork the SD cards pretty easily. Turns out, that’s not just a Pi thing, because I managed to bork one of my first EGG SD cards, too. Go figure!

And this device is why I went through airport security the other day with 10 electrodes on. (I disconnected the device, put it in my bag alongside my OpenAPS rigs, and they all went through the x-ray just fine, as always.)

Just like OpenAPS, this device is obviously not waterproof, and neither are the electrodes, so there are limitations to when I can wear it. Generally, I’ve been showering at night as usual, then applying a fresh set of electrodes and wearing the device after that, until the next evening when I take a shower. Right now, hard core activity (e.g. running or situps) generates too much noise in the stomach for the data to be usable during those times, so I’ve been wearing it on days when I’ve not been running and when I’ve not been traveling so Scott can help me apply and connect the right electrodes in the right places.

This device is straight from a lab, too, so like with #OpenAPS I’ve been an interesting guinea pig for the research team, and have found even low-level activity like bending over to put shoes on can trigger the device’s reset button. That means I’ve had to pay attention to “is the light still on and blinking” (which is hard since it’s on my abdomen under my shirt), so thankfully Armen just shipped me another version of the board with the reset button removed to see if that makes it less likely to reset. (Resetting is a problem because then it stops recording data, unless I notice it and hit the “start recording” button again, which drives me bonkers to have to keep looking at it periodically to see if it’s recording.) I just got the new board in the mail, so I’m excited to wear it and see if that resolves the reset problem!

Data-wise, it’s been fascinating to get a peek into my stomach activity and compare it to the data I have from OpenAPS around net insulin activity levels, dynamic carb absorption activity, expectations on what my BG *should* be doing, and what actually ended up happening BG-wise. I wore it one night after a 4 mile run followed by a big dinner, and I had ongoing digestion throughout the night, paired with increased sensitivity from the run so I needed less insulin overall despite still having plenty of digestion happening (and picture-perfect BGs that night, which I wasn’t expecting). I only have a few days worth of data, but I’m excited to wear it more and see if there are differences based on daily activity patterns, the influences of running, and the impact of different types of meals (size, makeup of meal, etc).

A huge thanks to Todd, Armen (who’s been phenomenal about getting me the translated GI data back in super fast turnaround time), and the rest of the group that developed the sensor. They just put out a press release about a publication with data from one of their GI studies, and this press release is a great read if you’re curious to learn more about the GI sensor, or this news piece. I’m excited to see what I can learn from it, and how we can potentially apply some of these learnings and maybe other non-diabetes sensors to help us potentially  improve daily diabetes management!

Vitamin D and insulin sensitivity

tl;dr – for me, Vitamin D hugely influences insulin sensitivity.

After the flu, I continued to be sick. We did the usual song and dance many people do around “hey, do you have pneumonia?”. Which, luckily, I didn’t, but I was still pretty sick and my after visit summary sheet said bronchitis. Also, my average BGs were going up, which was weird. After all, when I had the flu, I had spectacular BGs throughout. So I was pretty concerned when my time in range started dropping and my average BG started rising.

In diabetes, there are a lot of things that influence BGs. It can be a bad pump site; a bad bottle of insulin; stress; sickness; etc etc. that causes out of range BGs. Most of these are helped by having a DIY closed loop like OpenAPS. So, when your BGs start to rise above (your) normal and stay there, it’s indicative of something else going on. And because I was sick, that’s what I thought it was. But as I continued to gradually heal, I noticed something else: not only were my BG averages continuing to rise (not normal), but I also was needing a lot more insulin. Like, 20-30u more per day than usual. And that wasn’t just one day, it was 4 days of that much insulin being required. Yikes. That’s not normal, either.

So, I was thinking that I was hitting the Fiasp plateau, which made me really sad. I’ve been using Fiasp for many months now with good results. (For those of you who haven’t been tuned into the diabetes community online, while many people like Fiasp because it’s slightly faster, many people also have experienced issues with it, ranging from pump sites dying much faster than on other insulins; having issues with prolonged high BGs where “insulin acts like water”, etc.) But, I was prepared mentally to accept the plateau as the likely cause. I debated with Scott whether I should switch back to my other insulin for 2-3 sites and reservoirs to give my body a break, and try again. But I was still sick – so maybe I should wait until I was not clearing gunk out of my lungs. Or I was also pretty convinced that it was correlated with my absolute ZERO level of activity. (I had some rising BG averages briefly over Christmas where I was fearing the plateau, but turns out it was related to my inactivity, and getting more than zero steps a day resolved that.) I knew I would be moving around more the next week as I gradually felt better, so it should hopefully self-resolve. But making changes in diabetes sometimes feels like chicken and egg, with really complicated chickens and eggs – there’s a lot of variables and it’s hard to pin down a single variable that’s causing the root of the problem.

One other topic came up in our discussion – vitamin D. Scott asked me, “when was the last time you saw the sun?”. Which, because I’d been sick for weeks, and traveled for a week before that, AND because we live in Seattle and it’s winter, meant I couldn’t remember the last time I had seen the sun directly on my skin. (That sounds depressing, doesn’t it? Sheesh.)

So, I decided I would not switch back to the previous insulin I was using, and I would give it some time before I tried that, and I would focus on taking my vitamin D (because I hadn’t been taking it) and also trying to get at least SOME activity every day. I took vitamin D that night, went to bed, and….

…woke up with perfect BGs. But I didn’t hold my breath, because I was having ok nights but rough days that required the extra 30 units of insulin. But by the end of the day, I still had picture-perfect BGs (my “normal”), and I was back to using my typical average amount of insulin. PHEW. Day 2 also yielded great BG levels (for me, regardless of sickness) and around average level of insulin needed for the day time. Double phew. Day 3 is also going as expected BG and total insulin usage wise.

You might find yourself thinking, “how can it be as simple as Vitamin D? There’s probably something else going on.” I would think that – except for I have enough data to know that, when I’m vitamin D deficient, getting some vitamin D (either via pill or via natural form from sunlight) can pack a punch for insulin sensitivity. In 2014, Scott and I went out in February even when it was cold to sit in a park and get some sunshine. After about an hour of sitting and doing nothing, with no extra insulin on board, WHOOOSH. I went mega-low. I’ve had several other experiences where after being likely vitamin D deficient, and then spending an hour or so in sunlight, WHOOSH. And same for when there was no sunlight, but I took my vitamin D supplements after a while of not taking them. And no, they’re not mixed with cinnamon 😉 (That’s a diabetes joke, cinnamon does not cure diabetes. Nothing cures type 1 diabetes.)

So tl;dr – my insulin sensitivity is influenced by vitamin D, and I’ll be trying to do a better job to take my vitamin D regularly in the winters from now on!

Making changes in diabetes is hard by DanaMLewis

Quantified sickness when you have #OpenAPS and the flu

Getting “real people sick*” is the worst. And it can be terrifying when you have type 1 diabetes, and know the sickness is both likely to send your blood sugars rocketing sky high, as well as leave you exhausted and weak and that much harder to deal with a plummeting low.

*(Scott hates this term because he doesn’t like the implication that PWD’s aren’t real. We’re real, all right. But I like the phrase because it differentiates between feeling bad from blood sugar-related reasons, and the kind of sickness that anyone can get.)

In February 2014, Scott got home from a conference on Friday, and on Saturday complained about being tired with a headache. By Sunday, I started feeling weary with a sore throat. By Monday morning, I had a raging fever, chills, and the bare minimum of energy required to drag myself into the employee health clinic and get diagnosed with the flu. And since they knew I was single and lived by myself, the conversation went from “here’s your prescription for Tamiflu” to “but you can’t be by yourself, maybe we should find a bed for you in the hospital” because of how sick I was. Luckily, I called Scott and asked him to come pick me up and let me stay at his place. And there I stayed in complete misery for several days, the sickest I’d ever been. I remember at one point on the second day, waking up from a fitful doze and seeing Scott standing across the room with his laptop on a dresser, using it as a standing desk because he was so worried about me that he didn’t want to leave the room at that point. It was that bad.

Luckily, I survived. (And good thing, right, given that we went on to build OpenAPS, yes? ;)) This year’s flu experience was different. This year I was real-people sick, but without the diabetes-related fear that I’d so often experienced in the past. My blood sugars were perfectly managed by OpenAPS. I didn’t go low. It didn’t matter if I didn’t eat, or did eat (potato soup, ice cream, and frozen fruit bars were the foods of choice). My BGs stayed almost entirely in range. And because they were so in range that it was odd, I started watching the sensitivity ratio that is calculated by autosensitivity to see how my insulin sensitivity was changing over the course of the sickness. And by day 5, I finally felt good enough to share some of that data (aka, tweet). Here’s what I found from this year’s flu experience:

  • Night 1 was terrible, because I got hardly any deep sleep (45 minutes, whereas 2+h is my usual average per night) and kept waking up coughing. I also was 40% insulin resistant all night long and into Day 2, meaning it took 40% more insulin than usual to keep my BGs at target.
  • Night 2 was even worse – ZERO deep sleep. Ahhhh! It was terrible. Resistance also nudged up to 50%.
  • Night 3 – hallelujah, deep sleep returned. I ended up getting 4h53m of deep sleep, and also was able to sleep for closer to 2 hour blocks at a time, with less coughing. Also, going into night 3 was pretty much the only “high” I had of being sick – up around 180 for a few hours. Then it fell off a cliff and whooshed down to the bottom of my target, marking the drastic end of insulin resistance. After that, insulin sensitivity was fairly normal.
  • Night 4 yielded more deep sleep (>5 hours), and a tad bit of insulin sensitivity (~10%), but it’s unclear whether that’s totally sickness related or more related to the fact that I wasn’t eating much in day 3 and day 4.
  • Night 5 felt like I was going backward – 1h36m of deep sleep, tons of coughing, and interestingly a tad bit of insulin resistance (~20%) again. Night 6 (last night) I supposedly got plenty of deep sleep again (>4h), but didn’t feel like it at all due to coughing. BGs are still perfectly in range, and insulin sensitivity back to usual.

This was all done still with no-bolus, and just carb announcement when I ate whatever it was I was eating. In several cases there was negative IOB on board, but I didn’t have the usual spikes that I would normally see from that. I had 120 carbs of gluten free biscuits and gravy yesterday, and I didn’t go higher than 130mg/dl.

It’s a weird feeling to have been this sick, and have perfectly normal blood sugars. But that’s why it’s so interesting to be able to look at other data beyond average, time in range, and A1c – we now have the tools and the data to be able to dive in and really understand more about what our bodies are doing in sick situations, whether it’s norovirus or the flu.

I’m thinking if everyone shared their data from when they had the flu, or norovirus, or strep throat, or whatever – we might be able to start to analyze and detect patterns of resistance and otherwise sensitivity changes over the course of typical illness. This way, when someone gets sick with diabetes, we’d know generally “expect around XX% resistance for Days 1-3, and then expect a drop off that looks like this on Day 4”, etc.

That would be way better than the traditional ways of just bracing yourself for sky-high highs and terrible lows with no understanding or ability to make things better during illness. The peace of mind I had during the flu this year was absolutely priceless. Some people will be able to get that with DIY closed loop technology; but as with so many other things we have learned and are learning from this community, I bet we can find ways to help translate these insights to be of benefit for all people with diabetes, regardless of which therapies they have access to or decide to use.

Want to help? Been sick? Consider donating your data to my diabetes sick-day analysis project. What you should do:

  1. If you’re using a closed loop, donate your data to the OpenAPS Data Commons. You can do all your data (yay!), or just the time frame you’ve been sick. Use the “message the project owner” feature to anonymously message and share what kind of illness you had, and the dates of sickness.
  2. Not using a closed loop, but have Nightscout? Donate your data to the Nightscout Data Commons, and do the same thing: Use the “message the project owner” feature to anonymously message and share what kind of illness you had, and the dates of sickness.

As we have more people who identify batches of sick-day data, I’ll look at what insights we can find around sensitivity changes before, during, and after sickness, plus other insights we can learn from the data.

Not bolusing for meals (Fiasp, 0.6.0 algorithm in oref0 dev branch, and more)

I tweeted last week+, “I just realized I’ve now gone about 3 weeks without meal bolusing.” That means just a meal announcement (i.e. carb entry estimate, a la 30 carbs or 60 carbs or whatever, based on my IFTTT buttons). No manual bolus.

I kind of keep waiting for the other shoe to drop, because it sounds to good to be true. I’m sure you’re skeptical reading this.

I bet she’s doing SOME bolus.

Well, she must not be eating any carbs.

She must be having worse outcomes, bad post-meal BGs, etc.

Nope, nope, and nope.

  • While I started testing this new set of features with partial boluses and worked my way down (see more below on the testing topic), I’m now literally doing no manual meal bolus. I start eating, and press one button on my watch for a carb estimate entry (that via IFTTT goes to Nightscout and my rig).
  • I eat carbs. I’ve eaten 120 grams of carbs of gluten free biscuits and gravy; 60-90 grams of pasta; dinner followed by a few gluten free cookies, etc.
  • More nuanced details below, but:
    • My 70-180 time in range has stayed the same (93+%) compared to the versions I was testing before with manual meal boluses.
    • My 70-150 and 80-160 time in ranges have decreased slightly compared to manual meal boluses, but…
    • My average blood sugar has actually dropped down (as has my a1c to match).
    • (So this means I’m having a few more spikes above 160, usually topping off in 160-170 whereas before my manual meal boluses would have me top off around 150, when all was well.)

Also note – no eating soon required. No early bolus or pre-bolus. Just single button press as I stick food in my mouth.

Wow.

(See where I said, waiting for the other shoe to drop?)

That’s why I waited a while to even tweet about it. Maybe it’s a fluke. Maybe it won’t work for other people. Maybe, maybe, maybe. Who knows. It’s still fairly early to tell, but as other people are beginning to test the current dev branch of oref0 with 0.6.0-related features, other people are starting to see improvements as well. (And that could be some of the many other features we are adding to 0.6.0, ranging from exponential curves for insulin activity, to allowing SMBs to do more, to carb-ratio-tuned-autosensitivity, to huge autotune improvements, etc.) 

So while I don’t want to over-hype – and never do, what works for me will not work for everyone – I do want to share my cautious excitement over continuing to be able to push the envelope on algorithms and what might be possible outcome-wise for this kind of technology.

Here’s what is enabling me to be in the no-bolus zone for now well over a month, with still (to me) great outcomes worth the tradeoffs described above:

  1. Faster insulin. Thanks to our lovely looping friends in Germany/Austria, we came back from Europe with a few vials of Fiasp to try. I was HIGHLY skeptical about this. Some of our European friends saw great results right away, others didn’t. I didn’t get great results on it at first. Some of that may be due to natural changes between insulin types and not knowing exactly how to adjust my manual bolus strategy to the faster insulin action, but until we did some code changes to allow SMB‘s to do more and added some other features to what’s now 0.6.0, I wasn’t thrilled and in fact after about two weeks of it was about to switch off of it. So that brings me to #2.
  2. More improvements to the algorithm, which is now what will become the 0.6.0 release of oref0. There’s a whole lot of stuff packed in there. Exponential curves. Different carb absorption decay calculations. Allowing SMB to do more. Additional safety guards since we ramped SMB up.

How we started testing no-bolus approach:

  • I have always known that about 6u of insulin (thanks to testing dating back to my early DIYPS days, many many many moons ago) is about as much as I should bolus at any time. So, even if I ate 120 carbs, I usually did about a 6u bolus up front, and let the rig pick up the rest as needed over more hours. I started doing ~75% or something like that of boluses, based on wherever I felt like rounding to with my easy bolus buttons.
  • Whether I did 75% or 100%, I didn’t see a ton of difference at first…
  • ..so I took a leap and tried no-bolus with some SMB adjustments to allow it to ramp up faster with carb entry. Behaviorally, I find it a lot easier to do nothing 😀 vs. figure out the right amount of up front bolus. And outcomes wise (see above) it was very similar.

It definitely was an interesting approach to test. Between the Fiasp and the no-bolus up front, in some meals it matched really well and I had practically no rise. Due to incoming netIOB, food type, etc, sometimes I did have a rise – but while it spiked slightly higher (160-170 usually vs my earlier 150s with manual bolus), it was only up there for 2-3 data points and then came sharply down, leveling out smoothly in my preferred post-meal range. So an important lesson I learned was not to over-react to just the BG curve going up, without looking at the predictions to see where I was going to come just back down. (And as I had more than one meal where the spike and drop back to normal happened, it was very easy to adjust to the BG graph and not get that emotional tug to “do more” with a quick short rise like that).

Obviously, starting BG makes a difference. I’m usually starting <130 mg/dL when I see these spikes cap out at 170 or lower. I’ve started higher, and seen higher rises, too. They’re not all perfect: with occasional pump site issues, carb underestimates, unplanned carb stacking, and all the randomness of diabetes and a non-structured lifestyle (including live-testing bleeding edge algorithm changes), I’ve spent 12% of the last month >160 mg/dL, which is about the same as the 3 months before that. But in most cases (I’d say 95%), the no-bolus approach has actually yielded better outcomes than I expected AND has avoided post-meal lows better than I would have achieved with a manual bolus.

This is huge when you think about the QOL aspect of not having to do as much math at a meal; and when you think about all the complicating factors related to food – timing (do you bolus when you order, or when the food arrives, or earlier than that?), and the gluten factor. I have celiac disease, so if I’m eating out (which we do a lot, and especially since I travel frequently), bolusing prior to setting eyes on the food (knowing they didn’t plate it with bread, causing them to have to go back and start all over again) just isn’t smart. That’s why eating soon historically worked so well for me vs. traditional pre-boluses, because I could set the target entering the restaurant, bolus when I laid eyes on my hopefully safe food, and get reasonable (150 topping out) meal outcomes.

It also worked really well in the case where a restaurant cooked my gluten free pasta in the same pasta cooker and water as regular pasta, but didn’t inform me until after I found stray gluten noodles in the bottom of my pasta dish and started asking how that was possible since they (used to) do gluten free well. (Now, I pick up heaps of pasta, and sort pasta noodles one by one to make sure they all match before ever eating gluten free pasta. It makes waiters look at you very worriedly as you wave pasta around in the air, but better safe than glutened (again).) So, I was majorly glutened, and my digestion system was all out of sorts (isn’t that a nice polite way to describe getting glutened?) for many days, which of course impacted BG and insulin right then and for the days afterward. But because I had done carb entry and no-bolus, I was able to edit the carb entry down, and I didn’t have that much insulin stacked, and didn’t end up low after glutening, which is usually what happens.

Is that a super regular situation for most people? No. But it was super nice. And also helped me face pasta again last night, so I could put in a (very low in case of gluten) carb estimate, match my noodles, eat pasta, and let the SMBs ramp up to match absorption. It works very well for me.

Whether you have celiac or not, for many reasons (insert yours here), it’s nice to not to have to commit to the bolus up front. It’s closer to approaching what I think non-PWDs do at mealtimes: just eat.

(I haven’t done much testing (yet? TBD) for no-carb-entry and no-meal-bolus scenario, I expect I would have higher spikes but would be interesting to see if it would still come down reasonably fast. Probably wouldn’t be my go-to strategy because I don’t mind a general meal size estimate one button push, but would be nice to know what that curve shape would look like. If I test that, it’ll start with small snacks and ramp my way up.)

The questions I always get:

  1. Q: HOW DO I GET THIS?
    A: Caution: like all things OpenAPS but especially always true for the development branch, 0.6.0 is NOT released yet to master and is still highly experimental. I wouldn’t install dev unless you want to pay lots of close attention to it, and are willing to update multiple times over the course of the week, because Scott and I are merging features and tweaks almost daily to it.

    Got the disclaimers down? Ok. It’s in the dev branch of oref0. You should read this PR with notes on some more detail of what’s included, but you should also review the code diff to see all that’s changed, because it’s not all documented yet. Also, follow the instructions at the bottom to be able to install it without git. Hop into Gitter if you have questions about it!

    (Big huge thanks to folks like Tim and Matthias for early testing of 0.6.0; and to Tim for writing up about the initial rounds of 0.6.0-dev here (note that we’ve made further changes since this post), and others who’ve been testing & providing feedback and input into the dev branch!)

  2. Q: When will this get “released” to master?
    A: It depends. This is still a highly active dev branch, and we’re making a lot of changes and tweaking and testing things. The more people who test now and provide feedback will enable us to get to the final “prepare for release” testing stage. Lots and lots of testing, and things depend on how much existing needs tweaked, and what else we decide should go with this release. So, there’s never any specific release date.

  3. Q: What is Fiasp?
    A: Faster acting insulin that was only approved in Europe and Canada…until today. Convenient timing. I asked a PR person who messaged me about it, and they said it’s estimated to be available in U.S. pharmacies by late December/earlier Q1. As previously stated, available elsewhere in other parts of the world.

    Fiasp peaks sooner (say, ~45 minutes) with the same tail as everything else. It’s not instantaneous. For your million and one questions about whether it’s approved for your use in a tree, on a plane, at the zoo, and all other extrapolations – please ask Google/your doctor/the manufacturer, and not me. I don’t know. :)

  4. Q: Will any of this work for people NOT on Fiasp?
    A: Nothing is guaranteed (even for other people on Fiasp), but the folks who’ve started testing 0.6.0 even without Fiasp (on Humalog or Novolog/Novorapid, etc.) have been happier on it vs. earlier versions, too.

    I don’t expect Fiasp to work super well forever for me, given what I’ve heard from other people with months of experience on it…and given my first two weeks of Fiasp not being spectacular, I want people to not expect miracles. (Sorry, this blog post does not promise miracles, so sorry if you got super excited at the above. No miracles! This is not a cure! We still have diabetes!) Like all things artificial pancreas, I think it’s better to be cautiously hopeful with realistic expectations that things *might* be a little bit better than before, but as always, YDMV (your diabetes may/will always vary), your body will vary, and life happens, etc. so who knows.

Just 4 months ago, we published a blog post pointing out that the new features had allowed us to achieve 4 out of 5 of: no bolus; not counting carbs, medium/high carb meals, 80%+ time in range; and no hypoglycemia.  With Fiasp and  0.6.0 (currently what’s in the dev branch), we’ve now achieved all 5 simultaneously: I can eat large high-carb meals, enter very vague guesstimates of 60 or 90 carbs (no need for actual carb counting, just general size-based meal announcement), and still achieve 80%+ time in range 70-150 mg/dL without ever going <55 mg/dL.  Does that mean that OpenAPS with Fiasp finally meets the definition of a “real” Artificial Pancreas (step 5 on JDRF’s 6-step AP development pathway)?  We think it does.

So, tl;dr (because long post is long): with Fiasp and 0.6.0-dev branch, I’m able to not bolus for meals, and just enter a very generally sized meal estimate. It’s working well for me, and like all things, we’re working to make it available to other people via OpenAPS for others who want to try similar features/approaches. It may not work well for everyone. If it helps one other person, though, like everything else it’ll be worth it. Big thanks to Scott for LOTS of development in 0.6.0 and partnership in design of these features; too many people to name for testing and providing feedback and helping iterate on these features; and to the entire community for being awesome and helping us to continue to push the envelope on what might be possible for those of us with type 1 diabetes. :)

What you should know about closed looping (DIY like #OpenAPS or otherwise)

I’ve been wearing a DIY closed loop for something like 979 days..which means something like ~20,000 hours with this technology. Additionally, I’m not the only one. There are (n=1)*369+ (and that’s an undercount just based on who’s told us they’re looping) other DIYers out there, so the community has an estimated 1,800,000+ hours of cumulative experience, too.

Suffice to say, we’ve all learned a lot about this technology and how hybrid closed loop makes a difference in life with diabetes.

I previously gave a talk almost two years ago to the Sports & Diabetes Group Northwest here in Seattle, talking about #DIYPS, how we closed the loop, and #OpenAPS. (And you can see a recent TEDX talk I gave on OpenAPS here.) That was a springboard for meeting some awesome individuals who became very early DIY loopers in the Seattle area. And one of them (who also wore a pancreas at HIS wedding :)) had suggested we do another talk for SDGNW to update on some of what we have learned since then. But unfortunately, he got called out of town for work and couldn’t join me for presenting, so I went solo (ish, because Scott also came and contributed). I used a new analogy, because I think there’s a lot to think about before choosing and using closed loop technology, whether it’s DIY or commercial, and wanted to write it up for sharing here.

what_to_know_about_looping_danamlewis

First, some reminders for those familiar and some context for those who are not close to this technology. We’re talking about a hybrid closed loop, which is what I’m referring to when I say “artificial pancreas” or “AP” here. This type of technology makes small adjustments every few minutes to provide more or less insulin with the goal of keeping blood glucose (BG) levels in range. It’s complicated by the fact that insulin often peaks at 60-90 minutes…but food hits in ~15 minutes. So there’s often “catch up” being done with insulin to deal with food eaten previously, and also with hormones and other things that impact BGs that aren’t measurable. (This is also why it’s called hybrid, because for best outcomes people will still be doing some kind of meal announcement/bolus to deal with insulin timing.) As a result, even with pumps and CGMs, diabetes is still hard. A closed loop can do the needed math every five minutes, doesn’t go to sleep, and is very precise. It can respond more quickly (because it’s paying attention) than a human will in most situations, because we’re out living our lives/working/sleeping and not paying attention ONLY to diabetes. It’s not a cure, but it helps make living with diabetes better than it used to be.

However, I equate it to being a pilot who has seen technology on planes evolve to include “autopilot”. Even with hybrid closed loop technology, we’re still flying the “plane”.

looping_is_like_flying_plane_danamlewis

Here’s what I mean. There are stages for picking out and deciding to use the technology; preparing to use it/getting in the mode where you CAN use it; using it successfully; getting ready for the times when you can’t use it; and smoothing the way for the next time you use it.

It’s not perfect 24/7, you see, because we’re still using pump sites and continuous glucose monitor (CGM) sensors. The CGM sensor may last for 7 days, but then you have to change it out (or cough restart it cough), and you have a gap in data, which means you can’t loop. So you have this type of cycle regularly, and here’s what you need to know about each of these stages, regardless of whether we’re talking about DIY (like OpenAPS) or a commercial closed loop solution.

Preparing for takeoff

prepare_for_looping_danamlewisWhen you’re getting into the plane, you have a flight plan. You know when you will and won’t use the technology on board. Same for diabetes & closed looping. Make sure to think about the following for your tech of choice:

When will your loop work? When does it not? What happens if it breaks? What are your back up tools? How do you operate it: what happens if your sensor loses data, or you don’t calibrate? How does the algorithm work? What will it target your BG to be? What behaviors will you have to do (meal bolus or announcement, etc.) and how can you alter those to optimize performance? Also, what are the warning signs of failure to let you know when you need to take additional action with corrective insulin or eating carbs?

Taking off and the new technology learning curve

taking_off_learning_curve_danamlewisJust like switching from MDI pump (or even iPhone to Android and vice versa), you have a learning curve. When you go into looping or automated insulin delivery mode, you have to figure things out. You need to be able to figure out what’s happening and why it’s doing what it’s doing, so if you’re not happy with what’s happening, you can make a change. Why are you running high? Why are you running low? Knowing why it’s doing what it’s doing is critical for adjusting – either tweaking the closed loop settings, if you can, or adjusting your own behavior. Especially in the first few cycles of new tech, you’ll have a lot of learning around “I used to do things like X, but now I need to do them like Y.”

Why you might not be taking off and able to loop

blocking_takeoff_danamlewisYou also need to know why you can’t loop. There are three major categories of things that will prevent you from looping:

  1. No sensor, no looping.
  2. In some systems, wonky or missing data, no looping
  3. Communication errors between pieces of a system.

Some of these are obvious fixes (put in a new sensor if one fell out, or decide to put in a new sensor if the old one is bad), but depending on the system may involve some troubleshooting to get things going again.

Also, some of the commercial systems will kick you out of looping for various reasons (including lack of calibration), in addition to preventing you from looping in the first place without them, so knowing what these basic things are required for looping is useful to make sure you CAN automate.

Flying high: maintenance when you’re actually looping

maintenance_when_looping_danamlewisThere are some critical behaviors required for looping. (After all, when flying, there’s always a pilot present in the cockpit..right?!)

Some of these are basic behaviors you’ll be used to if you’ve been wearing a pump and CGM previously: keeping pump sites changed so the insulin works, and changing and calibrating CGM sensors.

HOWEVER – many people who “stretch” their CGM sensors find that they don’t want to stretch their sensors as far, as the data degrades over time. You do you, but keep in mind this might change when you’re looping vs. not, because you’re relying on good data to operate the system.

That being said, in addition to good sensor life, calibration hygiene is critical. You don’t want to loop off of wonky data, but also some commercial systems will kick you out if your calibration is way off and/or if you miss a calibration. (Personal opinion on this is a big ugh, which is why no DIY system that I know of does this.)

But if you keep your sites and sensors in good condition, this is where life is good. You’re looping! It’s microadjusting and helping keep things in range. Yay! This means better sleep, more time in range, and feeling better all around.

However, you still have diabetes, you’re still in the plane, so you still need to keep an eye on things. Monitoring the system is important (to make sure you’re still in autopilot and don’t need to actually fly the plane manually), so make sure you know how you (and your loved ones) can monitor the system’s operation, and know what your backup alarms are in case of system failures.

Note: there are approximately eleventy bajillion ways to remote monitor in DIY systems, but even if you have a commercial system that comes pre-baked without remote monitoring… you can add a DIY solution for that. So don’t feel like if you have a commercial AP that you can never use anything DIY – you can totally mix and match!

Dealing with turbulence

turbulence_danamlewisWhat kind of airplane/flight analogy would this be without including turbulence? :)

Like the things that can prevent looping in the first place, there are things that can throw off your looping. I already mentioned wonky sensor data that may mean either a blip in your looping time, or may kick you off looping. Again, your sensor life and your calibration practices will likely change.

But the other big disturbance, so to speak, is around body sensitivity changes. You know all the ways it can happen: you’re getting sick, recovering from getting sick, getting ready for/or are on/or are right after your period, or have an adrenaline spike, or have hormones surging, or have a growth spurt, or just exercised, etc.

This is what makes diabetes oh so hard so often. But this is where different closed loop systems can help, so this is one area you should ask about when picking a system: how does it adjust and adapt to sensitivity changes, and on what time frame? (In the DIY world, we use a number of techniques with this, ranging from autosensitivity to adapt on a 24 hour rolling scale of sensitivity changes, as well as using autotune to track bigger picture trends and changes needed to underlying settings. Reminder – anyone can use autotune if they’re willing to log bolus & carb data in Nightscout, not just closed loopers, so check that out if you’re interested! All DIY closed loop systems also use dynamic carbohydrate absorption in their respective algorithms, so that if you have slowed digestion for ANY reason, ranging from gastroparesis to getting glutened if you have celiac to merely walking after a meal, the system takes that into account and adjusts accordingly.)

The other things that can help you tough out some turbulence? Setting different modes, like an activity mode for exercise. The two things to know about exercise are:

  1. You don’t want to go into exercise with a bucket of IOB, so set activity mode WELL BEFORE you go out for activity. Depending on how much netIOB you have, that time may vary, but planning ahead with an activity mode makes a big difference for not going low during activity – even with a closed loop.
  2. Your sensitivity may be impacted for hours afterward, into the next day. See above about having a system that can respond to sensitivity changes like that, but also think about having multiple targets you can use temporarily (if your system allows it) so you can give the system a bigger buffer while it sorts out your body’s sensitivity changes.

Preparing for landing and making time between loops more smooth

prepare_for_landing_danamlewisJust like you’ll want to plan to go on the closed loop, you’ll want to plan for how to cycle off and then back on again. Depending on your system, there may be things you can do to smooth things out. One of the things I do is pre-soak a CGM sensor to skip the first day jumpy numbers. That makes a big difference for the first hours back on a “new” looping session. The other thing I do is stagger receiver start times (where I have two receivers that I stop/start at different times, so I’m not stuck for two hours without BG data to loop on).

But even if you can’t do that, you can do some other general planning ahead – like making sure your looping session doesn’t end in the middle of a big meal that’s being digested, or overnight. Those are the times when you’ll want to be looping the most.

Landing and preparing for the next looping session

Landing_danamlewisJust like learning to fly where you take a lot of training flights and review how the flight went, you’ll want to think about how things went and what you might change behavior-wise for your next looping session. Some of the things that may change over time as you learn more about your tech of choice:

  • Timing of meal announcement or boluses
  • Precision (if needed, or otherwise lack thereof) around carb counting
  • Using things like “eating soon” mode to optimize meal-time insulin effectiveness and reduce post-meal spikes
  • Using different activity patterns and targets to get ideal outcomes around exercise
  • Tweaking underlying settings (if you can)

General thoughts on looping

general_looping_reminders_danamlewisSome last thoughts about closed looping in general, regardless of the tech you might choose now or in the future:

  1. Picking one kind of technology does NOT lock you into it forever. If you’re DIYing now, you can choose commercial later. If you start on a commercial system, you can still try a DIY system.
  2. Don’t compare the original iPhone with an iPhone 6. Let’s be blunt: the Dexcom 7plus is a different beast than the Dexcom G4/G5. Similarly, Medtronic’s original “harpoon” sensor is different than their newest sensor tech. The Abbott Navigator is different than their Libre. Don’t be held up by perceptions of the old tech – make sure to check out the new stuff with a somewhat open mind.
  3. (Similarly, hopefully, in the future we’ll get to say the same about first-generation devices and algorithms. These things in commercial systems should change over time in terms of algorithm capabilities, targets, features, and usability. They certainly have in DIY – we’ve gotten smaller pancreases, algorithm improvements, all kinds of interoperability integration, etc.)
  4. All systems (both DIY and commercial) have pros and cons. They also each will have their own learning curves. Some of that learning is generalized, and will translate between systems. But again, iPhone to Android or vice versa – your cheese gets moved and there will be learning to do if you switch systems.
  5. Remember, everyone learns differently – and everyone’s diabetes is different. Figure out what works well for you, and rock it!

 

What I wish CDEs (diabetes educators) and other HCPs knew about DIY and other diabetes tech (#OpenAPS or otherwise)

I had the awesome opportunity to present at #AADE17, the annual education meeting for the American Association of Diabetes Educators, this past weekend. My topic was about OpenAPS and DIY diabetes… which really translates to some broader things I want all educators and HCPs to know about patients and technology, whether it’s DIY or just unknown to them. Unfortunately AADE didn’t record or livestream my session, so I wanted to write up a summary of the content here.

(If you’re new to this blog/me/OpenAPS, you can also watch this June 2017 TEDX talk where I share some of the story of how I ended up with a DIY artificial pancreas and how the OpenAPS community came to be; or this older talk from OSCON 2016 as well. As always, if you’re curious to learn more about OpenAPS or wondering how to build your own DIY artificial pancreas, OpenAPS.org is the first place to learn more!)

Diabetes is hard. Even if you are privileged to have access to insulin, education, and technology – it can still be so incredibly hard to get it right. And even if you do everything “right”, the outcomes will still vary. And after all, the devices themselves are not perfect, and we still have diabetes.

The lack of varying alarms and the unchangeable volume is what led me to create DIYPS (my open loop and louder alarm system), and the same frustration with lack of data access and visualization led John Costik, Lane Desborough, Ben West, and so many others to explore creating other DIY tools, such as Nightscout. And thanks to social media, we all didn’t have to create in a vacuum: we can share code (this is what open source means) and insight through social media, and build upon each other’s work. As a result, these collaborations, sharing, and iterative development is how OpenAPS, the open source artificial pancreas system movement, was created.

I tweet and talk and share frequently about how great it is having #OpenAPS in my life. Norovirus? No problem. Changes in sensitivity due to exercise? Not the biggie it used to be.

However, this technology is by no means a cure. It still requires work on the part of the person with diabetes. We still have to:

  • Change pump sites
  • Change CGM sensors
  • Calibrate regularly
  • Deal with bonked pump sites and sensors that fall out

And also, given the speed of insulin, most people are still going to engage with the system for some kind of meal bolus or announcement. This is why it’s called “hybrid” closed loop technology. (However, depending on the sophistication of the technology, you start to get to be able to choose what you want to optimize for and the behaviors you want to choose to do less of, which is great.)

In some cases, we humans know more than the technology: such as when a meal is going to happen/is coming, and when exercise is going to happen. So it’s nice to be able to interoperate your devices and be able to use your phone, watch, computer, etc. to be able to tell the system what to do differently (i.e. set higher targets in the case of activity, or lower targets to achieve “eating soon” mode , or in the case of waking up).

But in a LOT of cases, it’s tiring for the human to have to think about all the things. Such as whether a pump site is slowly dying and causing apparent insulin resistant. Or such as when you’re more sensitive 12-24 hours after exercise. Or during menstrual cycles. Or when sick. Or during a growth spurt. Or during jet lag. Or during a trip where you can’t find anything to eat. Etc. It’s a lot for us PWD’s to track, and this is where computers come in handy. Things like autosensitivity in OpenAPS to automatically detect changes in sensitivity and adjust the variables for calculations automatically; and autotune, to track the data of what’s actually happening and make recommendations for changing your underlying pump settings (ISF, carb ratio, and basal rates).

And how has this technology been developed by patients? Iteratively, as we figure out what’s possible. It’s not about boiling the ocean; it’s about approaching problems bit by bit as we have new tools to solve them, or new people with energy to think about the problem in different ways. It’s like thinking about getting a car – you wouldn’t expect the manufacturer to sell bits and pieces of the car frame, and you don’t really expect medical device manufacturers to sell bits and pieces of a pump or other device. However, patients are closest to the REAL problems in living with diabetes. Instead of a “car”, they’re looking for solutions for getting from point A to point B. And so in the car analogy, that means starting with a skateboard, scooter, or bike – and ending up with a car is great, but the car is not the point.

So no, any piece of technology isn’t going to be a cure or solve all problems or work perfectly for everyone. But that is true whether it’s DIY or a commercial tool: one size certainly does not fit all. And patients are individuals with their own lives and their own challenges with diabetes, with different motivations around what aspects of life with diabetes feel like friction and what they feel equipped to tackle and solve.

So, here’s some of what’s on my list for what I’d like CDE’s and other HCP’s to know as a result of the proliferation of technology around diabetes:

  • Yes, DIY tech is often off label. But that’s ok – it just means it’s off label; it doesn’t prevent you from listening to why patients are using it, what we think it’s doing for us, and it doesn’t prevent you from asking questions, learning more, or still advising patients.
  • Don’t make us switch providers by refusing to discuss it or listen to it, just because it’s new/different/you don’t understand it. (By the way: we don’t expect you to understand all possible technology! You can’t be experts on everything, but that doesn’t mean shunning what you don’t know.)
  • You get to take advantage of the opportunity when someone brings something new into the office – it’s probably the first of many times you’ll see it, and the first patient is often on the bleeding edge and deeply engaged and understands what they’re using, and open to sharing what they’ve learned to help you, so you can also help other patients!
  • You also get to take advantage of the open source community. It’s open, not just for patients to use, but for companies, and for CDEs and other HCPs as well. There are dozens if not hundreds of active people on Twitter, Facebook, blogs, forums, and more who are happy to answer questions and help give perspective and insight into why/how/what things are.
  • Don’t forget – many of the DIY tools provide data and insight that currently don’t exist in any traditional and/or commercially and/or FDA-approved tool. Take autotune for example – there’s nothing else out there that we know of that will tune basal rates, ISF, and carb ratio for people with pumps. And the ability of tools like Nightscout reports to show data from a patient’s disparate devices is also incredibly helpful for healthcare providers and educators to use to help patients.

And one final point specific to hybrid closed loop technology: this technology is going to solve a lot of problems and frustrations. But, it may mean that patients will shift the prioritization of other quality of life factors like ease of use over older, traditionally learned diabetes behaviors. This means things like precise carb counting may go by the wayside for general meal size estimations, because the technology yields similar outcomes. Being aware of this will be important for when CDE’s are working with patients; knowing what the patterns of behaviors are and knowing where a patient has shifted their choices will be helpful for identifying what behaviors can be adapted to yield different outcomes.

I think the increase in technology (especially various types of closed loops, DIY and commercial) will yield MORE work for CDE’s and HCP’s, rather than less. This means it’s even more important for them to get up to speed on current and evolving technology – because it’s by no means going away. And the first wave of DIY’ers have a lot we can share and teach not just other patients, but also CDE’s. So again, many thanks to AADE for the opportunity to share some of this perspective at #AADE17, and thanks to everyone for the engagement during and after the session!

Unexpected side-effect of closed looping: Body re-calibrations

It’s fascinating how bodies adapt to changing situations.

For those of us with diabetes: do you remember the first time you took insulin after diagnosis? For me, I had been fasting for ~18 hours (because I felt so bad, and hadn’t eaten anything since dinner the night before) and drinking water, and my BG was still somehow 550+ at the endo’s office.

Water did nothing for my unquenchable thirst, but that first shot of insulin first sure did.

I still remember the vivid feeling of it being an internal liquid hydration for my body, and everything feeling SO different when it started kicking in.

In case the BG of 550+, the A1c of 14+ (don’t remember exact number), and me feeling terrible for weeks wasn’t enough, that’s one of the things that really reinforced that I have diabetes and insulin is something my body desperately needs but wasn’t getting.

Over the last ~14+ years, I’ve had a handful of times that reinforced the feeling of being dependent on this life-saving drug, and the drastic difference I feel with and without it. Usually, it’s been times where a pump site ripped out, or I was sick and high and highly resistant, and then finally stopped being as resistant and my blood sugar started responding to insulin finally after hours of being really high, and I started dropping.

But I’ve had different ways to experience this feeling lately, as a result of having live with a DIY closed loop (OpenAPS) for 2+ years – and it hasn’t involved anything drastic as a HIGH BG or equipment failure. It’s a result of my body re-calibrating to the new norm of my body being able to spend more and more time close to 100% in range, in a much tighter and lower range than I ever thought possible (especially now true with some of the flexibility and freedom oref1 now offers).

I originally had a brief fleeting thought about how BGs in the low 200s used to feel like the 300s did. Then, I realized that 180 felt “high”. One day, it was 160.

Then one day, my CGM said flat in 120s and I felt “high”. (I calibrated, and turned out that it was really 140). I’ve had several other days where I’d hit 140s and feel like I used to do in the mid-200s (slightly high, and annoying, but no major high symptoms like 300-400 would cause – just enough to feel it and be annoyed).

That was odd enough as a fleeting thought, but it was really odd to wake up one morning and without even looking at my watch or CGM to see what my BGs had been all night, know that I had been running high.

I further classified “really odd” as “completely crazy” when that “running high” meant floating around the 130-140 range, instead of down in the 90-110 range, which is where I probably spend 95% of my nights nowadays.

Last night is what triggered this blog post, plus a recurring observation that because I have a DIY closed loop that does so well at handling the small, unknown variances that cause disturbances in BG levels without me having to do much work, that as result it is MUCH easier to pinpoint major influences, like my liver dumping glucose (either because of a low or because it’s ‘full up’ and needs to get rid of the excess).

In last night’s case, it was a major liver dump of glucose.

Here’s what happened:

Scott and I went on a long walk, with the plan to stop for dinner on the way home. BG started dropping as I was about half a mile out from the restaurant, but I’m stubborn 😀 and didn’t want to eat a fruit strip when I was about to sit down an eat a burger. So, my BG was dropping low when I actually ate. I expected my BG to flatten on its own, given the pause in activity, so I bolused fairly normally for my burger, and we walked the last .5 miles home.

However, I ended up not rising from the burger like I usually do, and started dropping again. It was quite a drop, and I realize my burger digestion was different because of the previous low, so I ended up eating some fruit to handle the second low. My body was unhappy at two lows, and so my liver decided to save the day by dumping a bunch of glucose to help bring my blood sugar up. Double rebound effect, then, from the liver dump and the fruit I had eaten. Oh well, that’s what a closed loop is for!

Instead of rebounding into the high 300s (which I would have expected pre-closed loop), I maxed out at 220. The closed loop did a good job of bolusing on the way up. However, because of how much glucose my liver dumped, I stayed higher longer. (Again, this probably sounds crazy to anyone not looping, as it would have sounded to me before I began looping). I sat around 180 for the first three hours of the night, and then dropped down to ~160 for most of the rest of the night, and ended up waking up around 130.

And boy, did I know I had been high all night. I felt (and still feel, hours later) like I used to years ago when I would wake up in the 300s (or higher).

Visuals

recalibration_3 hourHmm, 3 hours doesn’t look so bad despite feeling it.

recalibration_6 hour6 hour view shows why I feel it.

recalibration_12 hour12 hours. Sheesh.

recalibration_24 hour24 hours shows you the full view of the double low and why my liver decided I needed some help. Thanks, liver, for still being able to help if I really needed it!

recalibrating_pebble view of renormalizing Settling back to normal below 120, hours later.

There are SO many amazing things about DIY closed looping. Better A1c, better average BG, better time in range, less effort, less work, less worrying, more sleep, more time living your life.

One of the benefits, though, is this bit of double-edged sword: your body also re-calibrates to the new “normal”, and that means the occasional extreme BG excursion (even if not that extreme!) may give you a different range of symptoms than you used to experience.

This. Matters. (Why I continue to work on #OpenAPS, for myself and for others)

If you give a mouse a cookie or give a patient their data, great things will happen.

First, it was louder CGM alarms and predictive alerts (#DIYPS).

Next, it was a basic hybrid closed loop artificial pancreas that we open sourced so other people could build one if they wanted to (#OpenAPS, with the oref0 basic algorithm).

Then, it was all kinds of nifty lessons learned about timing insulin activity optimally (do eating soon mode around an hour before a meal) and how to use things like IFTTT integration to squash even the tiniest (like from 100mg/dL to 140mg/dL) predictable rises.

It was also things like displays, button, widgets on the devices of my choice – ranging from being able to “text” my pancreas, to a swipe and button tap on my phone, to a button press on my watch – not to mention tinier sized pancreases that fit in or clip easily to a pocket.

Then it was autosensitivity that enabled the system to adjust to my changing circumstances (like getting a norovirus), plus autotune to make sure my baseline pump settings were where they needed to be.

And now, it’s oref1 features that enable me to make different choices at every meal depending on the social situation and what I feel like doing, while still getting good outcomes. Actually, not good outcomes. GREAT outcomes.

With oref0 and OpenAPS, I’d been getting good or really good outcomes for 2 years. But it wasn’t perfect – I wasn’t routinely getting 100% time in range with lower end of the range BG for a 24hour average. ~90% time in range was more common. (Note – this time in range is generally calculated with 80-160mg/dL. I could easily “get” higher time in range with an 80-180 mg/dL target, or a lot higher also with a 70-170mg/dL target, but 80-160mg/dL was what I was actually shooting for, so that’s what I calculate for me personally). I was fairly happy with my average BGs, but they could have been slightly better.

I wrote from a general perspective this week about being able to “choose one” thing to give up. And oref1 is a definite game changer for this.

  • It’s being able to put in a carb estimate and do a single, partial bolus, and see your BG go from 90 to peaking out at 130 mg/dL despite a large carb (and pure ballpark estimate) meal. And no later rise or drop, either.
  • It’s now seeing multiple days a week with 24 hour average BGs a full ~10 or so points lower than you’re used to regularly seeing – and multiple days in a week with full 100% time in range (for 80-160mg/dL), and otherwise being really darn close to 100% way more often than I’ve been before.

But I have to tell you – seeing is believing, even more than the numbers show.

I remember in the early days of #DIYPS and #OpenAPS, there were a lot of people saying “well, that’s you”. But it’s not just me. See Tim’s take on “changing the habits of a lifetime“. See Katie’s parent perspective on how much her interactions/interventions have lessened on a daily basis when testing SMB.

See this quote from Matthias, an early tester of oref1:

I was pretty happy with my 5.8% from a couple months of SMB, which has included the 2 worst months of eating habits in years.  It almost feels like a break from diabetes, even though I’m still checking hourly to make sure everything is connected and working etc and periodically glancing to see if I need to do anything.  So much of the burden of tight control has been lifted, and I can’t even do a decent job explaining the feeling to family.

And another note from Katie, who started testing SMB and oref1:

We used to battle 220s at this time of day (showing a picture flat at 109). Four basal rates in morning. Extra bolus while leaving house. Several text messages before second class of day would be over. Crazy amount of work [in the morning]. Now I just have to brush my teeth.

And this, too:

I don’t know if I’ve ever gone 24 hours without ANY mention of something that was because of diabetes to (my child).

Ya’ll. 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 work makes a real difference in the real lives of real people. (And, it’s helpful for Scott to hear this type of feedback, too – since he doesn’t have diabetes himself, it’s powerful for him to see the impact of how his code contributions and the features we’re designing and building are making a difference not just to BG outcomes.)

Thank you to everyone who keeps paying it forward to help others, and to all of you who share your stories and feedback to help and encourage us to keep making things better for everyone.