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On the day I was diagnosed with diabetes I was given a blood glucose meter. It was a nondescript cream colour, came in a dark blue padded bag and took 20 seconds to count down before giving me a reading, as was norm back in 1998. I can’t tell you much more about it.
In 2001, I got my first insulin pump: a Medtronic 507C. I think it was black. That’s pretty much all I remember about it.
Sometime in 2004, I upgraded to a Deltec Cozmo pump as soon as it was launched in Australia. It was a beauty – a charcoal grey, wonderfully organic design that felt sublime to hold. It was smart and cute, with a heap of features my first pump didn’t have. I loved the bolus wizard, and credit it a lot with the incredibly tight glucose management I maintained while pregnant with my daughter. That was the pump that was in the operating room with me when she was first handed to me, and it was nestled down my bra for the two years I breastfed her. She would hold onto the pump tubing in her tiny baby paws while she nestled into me for a feed. I was heartbroken when Deltec went out of business because I knew I’d need to change pump brands when the warranty was up. My old Cozmo is in a box in my diabetes supplies cupboard, too precious to throw away. To this day I think of that pump fondly and get all excited when someone else mentions how they used one, reminiscing about their love for it.
Since then, there have been a couple more pumps and countless blood and continuous glucose meters. I have limited memories of any of them. Oh, except for maybe the pink MDT paradigm I rebooted when I started DIY looping and still use today. But my fondness for that particular device is mostly because it’s pink. There was the iBGStar – a fun little gimmick because it attached directly to the charging point at the bottom of an iPhone. Remember? It was around for all of about 15 minutes because the next gen iPhone used different chargers and iBGStars were relegated to the DTech museum.
Really, there has only been one piece of kit that stands there next to that Deltec Cozmo. And it’s this (slightly blurred) baby you see on my arm. My Fenix.
I have been using this same transmitter pretty much continuously since June 2018. It’s a rechargeable Dexcom G5 and has worked like a dream. Other than a few months where I was gifted some Dexcom G6 products, I’ve exclusively had this Fenix attached to my arm. It has worked like a dream and has saved me a fortune. How much?
The retail cost for Dexcom transmitters here in Australia is $540 (now available fully subsidised on the NDSS for people with type 1 diabetes). For the last four years, I’ve forked out exactly zero dollars. Had I been purchasing a new transmitter every 3 months, I would have paid $8,640. That’s a lot more than zero dollars. In fact, it’s about the price of a second-hand 2012 Fiat 500.
Where did I get this remarkable piece of kit? From a bloke called Simon who lives in rural Victoria and has been an absolute marvel in the way he has been providing affordable CGM kit for people with diabetes not just in Australia, but around the world, so they can use what they need at an affordable price. He re-batteries transmitters and forwards them on; answers questions about loopable pumps so that people can reap the rewards of DIYAPS. He is at the end of the phone or Facebook messenger to answer questions. He has also found a way to extend the use of G6 transmitters, with the Anubis.
My Fenix is one of the simplest, least fussy DTech devices I’ve used. It works the same way as any Dexcom transmitter, except that after about three months, instead of being thrown in the bin, it gets plugged into the wall for an hour to recharge. Simon created a super simple reset tool to override the factory-set cut-off timer built into Dexcom transmitters, so the ‘Transmitter expiring’ warning was just a reminder to reset it next senor change.
I’ve done this for over four years.
At diabetes conferences, after spying the slightly odd-looking device on my upper-arm, Dexcom reps have stopped me as I’ve been rushing by to ask about it. Most want to know if it’s ‘one of those rechargeable ones’ – they all knew about the mythical Fenix! – and were always interested to know just how it worked. I had dinner one night with a senior engineer from Dexcom who asked me dozens of questions and was delighted to hear about it. I only had one question: I wanted to know that if a bloke in Victoria’s High Country could make this happen and make this life saving tech cheaper for people with diabetes, why couldn’t a multi-million-dollar tech company do the same? I didn’t get an answer to my question.
My Fenix is retiring because I’ve worked my way through my G5 sensor tash. Even though Dexcom G6 was launched into the Australian market over 12 months ago, I have happily continued to use the earlier generation with sensors either purchased or gifted from friends overseas who have been forced to upgrade. I haven’t minded that the sensors have been out of date (sometimes by years!) because it was never an issue. Plus, it meant that I could continue to use my Fenix.
The ingenuity and generosity of people in the diabetes community will never stop to amaze me. I reckon Simon could charge a fortune for his inventions, but he doesn’t. He covers his own costs, (but only sometimes; he donates a lot to people who can’t afford to pay). He is another example of a remarkable person in our remarkable community trying to make diabetes a little less burdensome. And my Fenix has meant four years of that.
When I talk about the diabetes kit I wear each and every day, I am at great pains to point out just how important it is that it does a lot more than just simply work. It needs to be simple, accurate, and not cause more stress. Skin in the game is literal and figurative when I stand up and speak about this, including how we literally and figuratively get attached to the devices that we love. I’d keep using my Fenix forever if that was the only CGM technology available to me because not once did it cause me any stress. It just made my life simpler; it reduced my diabetes burden, saved me money, and helped me hate diabetes a tiny bit less. My Fenix rose for the last time a couple of weeks ago, and now retired, lying in the same box as my Cozmo – reminders of how great DTech can be.
What’s the holy grail when it comes to diabetes technology? I suspect the answer may change depending on who you ask. Different people with diabetes, different ideas of burden, different priorities. But one thing that seems to be quite universal is that people with diabetes want to do less when it comes to their diabetes, and they want tech to help with that.
Each and every week, I get asked to review or promote new apps, devices and other types of technology. Or I am asked if I can provide some feedback on an idea which has the aim of improving the life of people with diabetes.
When time permits, I’ll spend some time with developers, and I always start by asking ‘What’s your point of difference?’. I want to know that because there’s so much out there already, and if it’s just another app or program to add to the noise, why bother?
The point of difference I am always searching for is the bit that means doing less. Anything that requires more input or thought process than what is currently available, without offering benefit elsewhere seems to be a waste of time.
I want to do less for more. Surely that’s not asking too much…
For me these days, if I want to check my glucose level, I glance down at my watch. I don’t need to do anything more. Or I swipe right on my iPhone to see a little extra: the header of my Loop app (which shows current glucose level, predicted graph, IOB and battery volume).
To bolus, I either open the Loop app on my phone (two taps after waking my phone), or on my watch and go from there (one tap after waking my watch).
It takes very little effort. I don’t in any way have to stop what I am doing. And it is super inconspicuous. No one knows what I’m doing – not that I’d care. But it’s nice not to have to do something that often draws attention, or questions from others.
I have often wondered if I’ll try a Tandem t:slim pump once Control IQ is finally launched into Australia, and the one thing that is stopping me is knowing that I’d have to give up bolusing from my phone or watch.
New devices or technologies that demand more seem to be in direct contrast to PWD demanding to do less. I wrote this piece after a conference presentation about the (first gen) Medtronic hybrid-closed loop system that showed added burden from users because the system required so much extra input. The very idea that a device developed to increase automation needed users to think about it more was baffling.
DIY systems are developed by people with diabetes, or loved ones of people with diabetes. Having that skin in the game means that there is a determination to deliver not only a product that does more, better, but one that doesn’t add to diabetes burden. You will never hear the idea of ‘it’s good enough’ because to us, it never is!
But even with these goals, there still is a user burden. Cartridges don’t fill themselves; infusion sets don’t change themselves; sensors don’t insert themselves; batteries don’t replace or recharge themselves.
Which brings me to the latest toy I’ve started using, which has managed to cut a few tasks from my diabetes job list.
The diabetes DIY world continues to push the envelope with all components of systems. And the latest from a group that has been looking at the use and affordability of CGM has recently been launched (albeit in limited numbers).
Say hello to Anubis, named for the god of death and the afterlife. The group working on Anubis has worked out how to give used G6 transmitters a new life, and, quite frankly, they are far more impressive in their afterlife! Simon Lewinson from the stunning and aptly named Mt Beauty part of Victoria has led on this work. Simon is the bloke who developed a rechargeable G5 transmitter – the Fenix – which has been one of my all time favourite pieces of DTech ever. I used it continually for about three years, only stopping to trial an Anubis.
I realised just how impressive the other day when I checked the settings on my newly inserted sensor using an Anubis transmitter:
That number circled is when my sensor expires – 60 days after the sensor was inserted. What that means is that there is no need for me to do a restart after 10 days. I’m not sure how many of you reading this have tried to restart a G6 sensor, but my experience has required my husband and a butter knife, and ensuring that sensor restarts were only done when there was harmony in the home. As someone who fully self-funds CGM, I will get every single last minute of life out of a sensor, so restarts G6s up to three times.
The spouse-wielding-cutlery step has now been removed, as has the need for a two hour warm up every ten days. Now, a sensor goes in, and it keeps going until it finally just stops working. I’m not really sure how long that will be. It’s day 12 now and there’s not been a blip, and I’m super interested to know just how many days it will tick along, undisturbed and uninterrupted. I certainly don’t expect to get to 60 days, but I’ll give it a red hot go!
My Anubis is the latest device in my arsenal that is helping to chip away at all the things diabetes demands of me – things that, quite honestly, spark no joy at all. I’ve not yet found that holy grail, but compared with what else there is available to me, and what I have used before, this is better. Less work, less burden, better results. Why wouldn’t I want more of that?!
Want more information?
The Bionic Wookiee has written this terrific piece explaining the nitty gritty tech details of Anubis. My eyes usually glaze over when reading this sort of stuff, but David does a stellar job making it interesting. And understandable!
Want an Anubis? Of course you do. This is the FB page to head to. It’s a new page and there’s not much on there just yet, but it is where info will be shared.
Last week, I posted this on Twitter:
I take no credit for these numbers or that straight CGM line, or the first thing in the morning number that pretty much always begins with a 5. Those numbers happen because my pancreas of choice is way smarter than me. Actually, in a perfect world, my pancreas of choice would not be outsourced, but what are you going to do when the one you’re born with decides to stop performing one of its critical functions?
Anyway. I should know by now that any time diabetes thinks I’m getting a little cocky or too comfortable, something will happen to remind me not to get used to those lovely numbers.
And so, we have Tuesday this week. I woke up with a now very unfamiliar feeling. I reached over and looked at my CGM trace which immediately explained the woolly-mouth-extreme-thirst-desperate-to-pee-oh-my-god-I’m-about-to-throw-up thoughts running through my head. I found the culprit for that feeling very quickly – a pump with an infusion set that had somehow been ripped out overnight.
I didn’t get a screenshot of that number in the high 20s to share, because my head was down the loo. Ketone-induced vomiting is always special first thing in the morning, isn’t it?
I put in a new pump line, bolused and waited, all while resisting the urge to rage bolus the high away. Because that’s all there is to do, isn’t there? I hoped that just waiting and allowing Loop to do its thing would work, and that everything would settle neatly – especially my stomach which was still feeling revolting.
And as I lay there, I had another feeling that is somewhat unfamiliar these days: the feeling that I absolutely loathe diabetes. Beautifully mimicking the waves of nausea were the waves of my total hatred for this condition and how it was making me feel and the way it had completely derailed my morning’s plans.
I don’t feel like that most of the time anymore, because diabetes so rarely halts me from taking a moment out to deal with it. Hypos are so infrequent, and so easily managed; hypers that need real attention just don’t happen; sleep is so seldom interrupted because of diabetes anymore. Life just goes on and diabetes drones on in the background – annoyingly, but not too intrusively.
But this morning was completely handed over to diabetes to wait it out for my glucose levels returned to range – thankfully with a gentle landing and no crash – and for my stomach to stop lurching. Ketones were flushed and the feeling of molasses-y textured blood running through my veins subsided.
By the afternoon I was feeling mostly human, with nothing more than a slight hangover from the morning. But the feeling of diabetes hatred had been reignited and was flashing through my mind constantly.
A couple of days later, with a full day of decent numbers behind me, there is no physical aftermath of those few hours of diabetes trauma. But there is a whisper of the absolute contempt I feel towards diabetes. It’s always there, I guess. It just had reason to rear its ugly head.
The OPEN Diabetes Project is currently running a survey to look at the impact of do-it-yourself artificial pancreas systems (DIYAPS) on the health and wellbeing of users. There are stories all over the DOC about how people with diabetes (and parents of kids with diabetes) have taken the leap to Loop. These stories provide wonderful anecdotal tales of just why and how this tech has helped people.
The idea behind this new survey from the OPEN Diabetes team is to continue to build evidence about the effectiveness of this technology as well as take a look into the future to see just what this tech could have in store.
And important part of this new study is that it is not only OPEN (see what I did there?) to people who are using DIYAPS. That means anyone with diabetes can participate.
This project is important on a number of levels. It was conceived by people with diabetes and a significant number of the people involved in the project team (and I am one of them) are living with diabetes. We very much live the day-to-day life of diabetes and that certainly does make a difference when thinking about research. Also critically important is the fact that the ACBRD has recently joined the OPEN Project consortium. Having a team of researchers exclusively looking at the behavioural impact of diabetes technology will offer insights that have not necessarily been previously considered in such a robust way.
All the information you need can be found by clicking on the image below – including who to speak with if you are looking for more information. Please share the link to the survey with any of your diabetes networks, healthcare professionals who can help pass on details and anyone else who may be able to help spread the word.
A reminder – this is open to everyone with diabetes – not just people using DIYAPS. (I’m stating that again because it may not be all that clear as you are reading through the material once you click through to the survey.) You do not need to be Looping or ever tried the technology. Anyone with any type of diabetes, or parents/carers of kids with diabetes can be involved.
DISCLSOURE
At the best of times, I’ll celebrate any kind of anniversary, but it seemed even more important to acknowledge my ‘loopiversary’ this year in what can really only be termed as the most fucked of times. Last week, I clicked over three years of looping, a decision that remains the smartest and most sensible I have ever made when it comes to my own diabetes management.
In reflecting just how Loop has affected my diabetes over the last three years, I’ve learnt a few things and here are some of them:
- The words I wrote in this post not long after I’d started looping are still true today: ‘…this technology has revolutionised every aspect of my diabetes, from the way I sleep, eat and live. I finish [the year] far less burdened by diabetes than I was at the beginning of the year.’
- The #WeAreNotWaiting community is but one part of the DOC, but it has provided the way forward for a lot of PWD to be able to manage their diabetes in ways we never thought possible.
- Even before I began to Loop, the kindness and generosity of people in that community was clear. I took this photo of Dana and Melissa, two women I am now lucky to count amongst my dearest friends, at an event at ADA, just after they had given me a morale boosting pep talk, promising that not only could I build loop for myself, but they would be there to answer any questions I may have. I bet they’re sorry they made that offer!
- Loop’s benefits are far, far beyond just diabetes. Sure, my diabetes is easier to manage, and any clinical measurement will show how much ‘better’ I am doing , but the fact that diabetes intrudes so much less in my life is, for me, the real advantage of using it.
- That, and sleep!
- I get ridiculously excited when other people make the leap to looping! I have watched friends’ loops turn green for the very first time and have wanted to cry with joy because only now will they understand what I’ve been ranting about. And experience the same benefits I keep bleating on about.
- It’s not for everyone. (But then, no one said it was.)
- You get out what you put in. The more effort and time and analysis you put into any aspect of diabetes will yield results. But with Loop, even minimal effort (I call the way I do loop ‘Loop lite’) means far better diabetes management than I could ever achieve without it.
- It took an out of the box solution to do, and excel at, what every piece of commercial diabetes tech promises to do on the box – and almost always falls short.
- It’s amazing how quickly I adapted to walking around all the time with another but of diabetes tech. My trusty pink RL has just been added to the phone/pump/keys/ wallet (and, of course, mask) checklist that runs through my head before I leave the house.
- Travelling with an external pancreas (even one with extra bits) is no big deal.
- I was by no means an early adopter of DIY tech, but I was way ahead pretty much any HCPs (except, of course, those living with diabetes). The first talk I gave about Loop still scars me. But it is pleasing to see that HCPs are becoming much more aware and accepting of the tech, and willing to support PWD who make the choice to use it.
- The lack of understanding about just what this tech does is astonishing. I surprised to still see people claiming that it is dangerous because users are ‘hacking’ devices. Language matters and you bet that this sort of terminology makes us sound like cowboys rather than having been thoughtful and considered before going down the DIY path.
- The lengths detractors (usually HCPs and industry) will go to when trying to discredit DIYAPS shouldn’t, but does, surprise me. The repeated claims that it is not safe and that people using the tech (for themselves or their kids) are being reckless still get my shackles up.
- Perhaps worst of all are those that claim to be on the side of those using tech, but under the guise of playing ‘devil’s advocate’ do more damage than those who outwardly refuse to support the use of the technology.
- The irony of being considered deliberately non-compliant when my diabetes is the most compliant it ever has been hurts my pea-sized brain. regularly.
- There is data out there showing the benefits and safety of looping. Hours and hours and hours of it.
- My privilege is on show each and every single time I look at the Loop app on my phone. I am aware every day that the benefits of this sort of technology are not available to most people and that is simply not good enough.
- Despite all the positives, diabetes is still there. And that means that diabetes burnout is still real. But now, I feel guilty when feeling burnt out because honestly, what do I have to complain about?
But perhaps the most startling thing I learnt on this: The most variable – and dangerous – aspect of my diabetes management has always been … me! Loop takes away a lot of what I need to do – and a lot of the mistakes I could, and frequently did, make. Loop for me is safer and so, so much smarter and better at diabetes than I could ever hope to be. I suspect that as better commercial hybrid closed loop systems come onto the market, those who have been wary to try a DIY solution will understand why some people chose to not wait.
And finally, perfect numbers are never going to happen with diabetes. But that’s not the goal, really is it? For me, it’s about diabetes demanding and being given as little physical and emotional time and space in my life. With Loop, sure numbers are better – but not perfect – and I do a lot less to make them that way. It took a system that did more for me, keeps me in range for most of my day, and has reduced the daily impact of diabetes in my life to truly understand that numbers don’t matter.
Sometimes it feels as though discussions in the diabetes are seasonal. Like clockwork, we see the same conversations happen at the same times. Without missing a beat, almost as soon as a scientific conference is over, someone will comment about how difficult it is for PWD to get to conferences (true, however this year, #dedoc° voices could have assisted a number of the people who were stating that), and then there are discussions about disclosure by PWD who are fortunate to attend, even though pretty much every advocate I know who attends these sorts of things does a stellar job of disclosing.
And of course, the nature of the first big meeting of the year, ATTD, means that there inevitably will be noise about the gap in technology access. And you bet this is a discussion that we need to be having on regular rotation.
After attending my first ATTD, I wrote a piece about the complete and utter dichotomy of being at a conference that was only talking about the latest and greatest in technology while, at the same time, whilst the community was in the midst of its usual Spare a Rose month of fundraising. I struggled to balance the idea that we were talking about automated insulin delivery at the same time as urging donations so people could just get insulin!
Today, I’m revisiting the piece I wrote after last year’s ATTD, where my worlds of diabetes technology and language matters merged, and combined this with the over-representation of those at the super-dooper-tech-y end of the diabetes technology spectrum. (‘Super-dooper-tech-y’ is, obviously, a very technical term.)
I don’t for a moment think that meetings with a strong tech focus should end, or that those who are innovators in technologies should take a seat and let others speak. I don’t believe that at all. I will be forever grateful to the pioneers who continue to push the envelope and make things better for people with diabetes. But I do think that we need to ensure that there is equal attention to those who – by choice or because of their circumstances – are not walking around with an algorithm driving their diabetes.
If we truly believe that all diabetes stories matter, then we need to hear from people doing diabetes in every way possible. Perhaps if we make more of an effort to find and hear those stories, we will stop minimising our experiences, and starr seeing that whatever we are managing to do is truly enough…
DISCLOSURE 1 (for ATTD 2020)
I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference.
We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.
In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.
And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘I just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.
I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)
At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.
The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.
Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!
There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.
And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.
It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.
Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them. We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.
Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.
So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.
I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I mean…I use Loop. It works for me. Perfectly.’
We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.
DISLCOSURE 2 (for ATTD 2019)
I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.
Two years ago, I walked off the stage at the inaugural ADATS event feeling very shaken. I’m an experienced speaker, and regularly have presented topics that make the audience feel a little uncomfortable. I challenge the status quo and ask people to not accept the idea that something must be right just because ‘that’s how it’s always been done’. Pushing the envelope is something that I am more than happy to do.
But after that very brief talk I gave back in 2017, a mere three months after I started Looping, I swore I would never speak in front of a healthcare professional audience again.
That lasted all of about two months.
In hindsight, I was more than a little naïve at how my enthusiasm about user-led technologies would be received. I can still remember the look of outright horror on the face of one endo when I cheerfully confirmed:‘Yes! Any PWD can access the open source information about how to build their very own system. And isn’t that brilliant?!
Fast forward to last Friday, and what a different two years makes! The level of discomfort was far less, partly because more than just a couple of people in the room knew about DIYAPS. In the intervening years, there have been more talks, interviews and articles about this tech, and I suspect that a number of HCPs now have actually met real-life-walking-talking loopers. Plus, Diabetes Australia launched a position statement over a year ago, which I know has helped shape discussions between HCPs and PWDs.
I’ve gotten smarter too. I have rejigged the words I use, because apparently, #LanguageMatters (who knew?!), and the word ‘hack’ scares the shit out of people, so I don’t use it anymore. (Plus, it’s not really accurate.) And, to protect myself, I’ve added a disclaimer at the beginning of my talk – a slide to reinforce the sentiment that I always express when giving a talk about my own life with diabetes, accentuating that I am speaking about my own personal experiences only and that I don’t in any way, shape or form recommend this for anyone else. (And neither does my employer!)
I framed my talk this time – which had the fabulously alliterative title ‘Benefits, Barriers and Burdens of Diabetes Tech’ by explaining how I had wanted to provide more than just my own perspective of the ‘three B’s’. I am but one voice, so I’d crowd sourced on SoMe for some ideas to accompany my own. Here’s just some of the responses.
(Click to enlarge)And this:
One of the recurring themes was people’s frustrations at having to wade through the options, keep up with the tech and customise (as much as possible) systems to work. And that is different for all of us. One person’s burden is another person’s benefit. For every person who reported information overload, another celebrated the data.
What’s just right for me is not going to be just right for the next person with diabetes. So, I used this slide:
I felt that the story of Goldilocks and the Three Bears was actually a really great analogy for diabetes tech. Unfortunately, my locks are anything but golden, so I needed a little (basic and pathetic) Photoshop help with that.
In this fairy tale, Goldilocks is presented with things that are meant to help her: porridge for her hunger, a seat to relieve her aching legs and then a bed to rest her head after her busy day. But she has to work through options, dealing with things that are not what she wants, until she finds the one that is just right.
Welcome to diabetes technology.
On top of working out what is just right for us, we have to contend with promises on the box that are rarely what is delivered to us. Hence, this slide:
Apart from the Dex add circled in red, all the other offerings are ‘perfect’ numbers, smack bang in the middle of that 4-8 target that we are urged to stay between. These perfect numbers, obviously belonging to perfect PWD with their perfect BGLs, were always completely alien to me.
A selection of my own glucose levels showed my reality.
I explained that in my search for finding what was ‘just right’, I had to actually look outside the box. In fact, for me to get those numbers promised on the box, I had to build something that didn’t come in one. (Hashtag: irony)
Welcome to Loop! And my next slide.
And that brings us back to two years ago and the first time I spoke about my Looping experience in front of healthcare professionals. It was after that talk, during a debrief with some of my favourite people, that this term was coined:
Funny thing is, that I am now actually the very definition of a ‘compliant’ PWD. I attend all my medical visits; I have an in-range A1c with hardly any hypos; I am not burnt out. And I have adopted a Goldilocks approach in the way I do diabetes: not too much (lest I be called obsessive) and not too little (lest I be called disengaged), but just right.
It turns out that for me to meet all those expectations placed on us by guidelines and our HCPs, I had to do it by moving right away from the things there meant to help us. The best thing I ever did was start Loop. And I will continue to wear my deliberate non-compliance as a badge of honour and explain how it is absolutely just right for me!
I was speaking with someone who is thinking about starting to Loop the other day. I explained my own experiences – how simple the set-up had been (even after I’d delayed it for six months because I thought I wouldn’t be able to do it), how it is completely changed the way I think about diabetes, how much less time I have to dedicate to dealing with the daily frustrations of diabetes, how the highs and lows have been evened out and how glucose rollercoasters are a thing of the past.
‘So, you never have highs and lows? Ever?’ he asked me.
‘No; that’s not completely true,’ I said. I am frequently guilty of being evangelical about diabetes technology, and wanted to be sure that I wasn’t overselling DIYAPS. ‘After all, I still have diabetes!’
I have my range set to 4mmol/l – 8.0mml/l. It’s the mythical range that was presented to me as the ultimate goal the day I was diagnosed. It’s quite a tight range – I know that – and I probably could afford to ease up on that upper range. My target is 5.0mmol/l (it used to be 5.5mmol/l – another mythical number).
The reality is that for the very vast majority of the time, I am within that range, and hovering around that target number. If I was to check my Dex as soon as I woke up each morning, it would be boringly somewhere between about 4.8mmol/l and 5.3mmol/l.
But I still do spent time outside of the target range. The thing about Loop is that in most cases, I can explain the reasons when that happens.
I had a hypo the other night. A pretty terrible one, actually. I can’t remember the last time my Dex read LOW, but that was what I was staring at when I checked the app after my phone started screaming at me. I double checked with a finger prick and sure enough I was low. Really low. I treated (over treated) and was fine a short time later, albeit with a rebound leading to numbers I’ve not seen in a very long time.
How did that happen? Well, let’s start with the double bolus I gave myself. For some reason, I decided that the chicken soup with noodles I was eating for dinner needed not one, but two boluses. That was mistake number one. Mistake number two was not eating as much as I thought I was going to because I had a teleconference starting, so I left about half of my dinner in the bowl. Mistake number three was not realising mistake number one. And mistake number four was not doing anything to address mistake number two.
Following? Diabetes is fun!
The low resulted in an ‘eat-the-kitchen’ hypo that saw me eat six jelly beans, wait fifteen minutes and then recheck my glucose levels. Just kidding. I drank half a litre of juice, ate three bowls of breakfast cereal, chomped on a tube of fruit pastilles and then started attacking a homemade fruit bun my mum had delivered earlier in the day.
Because I was dying and all the carbs in the kitchen were the only way to prevent that happening.
The high that followed could be easily explained (see: juice, cereal, pastilles, fruit bun).
Other highs on Loop can usually also be explained quite simply. If I under bolus, I know pretty quickly, and Loop has already started doing its thing anyway to remedy that.
Stubborn highs generally mean one thing and one thing only: Renza, change your cannula. And as soon as I do, numbers come back into range fairly quickly.
Out of range numbers these days aren’t due to the unpredictability of diabetes. These days, they come down to one thing and one thing only: human error. My human error.
I trust Loop more than I trust myself. It is way smarter, completely and utterly unemotional, and an absolute workhorse, making adjustments every five minutes as required. It doesn’t get tired or busy or distracted. It understands numbers better than I ever will.
This is the cool tech I need to help me keep my diabetes moving. Of course, I still need the warm touch – the human connection – to help me make sense of my life with diabetes. But not having to think or do the diabetes numbers nearly as much gives me time and headspace I didn’t know I had. It keeps my numbers in range for the vast, vast majority of each day. And it means far fewer errors. Errors that I used to make all the time.
I am, after all, only human. Loop, on the other hand, is not.
One of the many highlights for me at last week’s EASD meeting was the satellite event about DIYAPS. It was a Hacking Health event, co-organised by the OPEN Project consortium and promised to highlight the perspective of the #WeAreNotWaiting movement through the eyes of people with diabetes, researchers and clinicians.
It was standing room only, with the event having sold out a few days earlier. I was a little late (I had to present at an event involving early researchers and PWD) so unfortunately missed the always brilliant Dana Lewis kick off the event.
If you ever need someone to warm up an audience and set the scene about the DIYAPS movement, Dana is your person! I have seen her present a number of times now, and always pity anyone who shares the stage with her. Her presentations are always enthusiastic, articulate and engaging, and leave the audience wanting more.
I followed her talk on Twitter as I was in the cab from the EASD conference centre to the Centre Cívic Sagrada Família (bonus of offsite events is actually seeing some of the tourist attractions the city has to offer!) and could see that the audience was enchanted and galvanised with her talk.
The program was packed – and provided a balanced view of not only people using the tech (because honestly, sometimes it can sound like we have all drunk the Kool-Aid!), but also about DIYAPS in clinical practice, and research settings, as well as a session on medical ethics.
There were many stand out moments for me, but perhaps the one that stands out the most was from paediatric endo, and fellow Looper, Katarina Braune where she was able to distil DIYAPS into this single sentence (as tweeted by another Looper, Andrea Limbourg):
Perfect, perfect summary of looping!
We also heard from Roman Hovorka who presented on the experience of developing the Cambridge closed loop system (CamAPS). Anyone who has been following artificial pancreas technologies and research would know of Roman. I’ve heard him speak a number of times at conferences around the world and have always been grateful for his passion and dedication to advancing technologies to benefit people living with diabetes. So, it was a little surprising that I found his talk a little challenging.
One of the things that I have always admired about the DIYAPS movement is that there is a strong sense that our chosen DIY path sits neatly alongside commercial systems and regulatory bodies. While we may not choose or want to use a commercial system (and, of course, are not waiting for them), that doesn’t mean that there is disdain or derision of other options. In fact, there is admiration and gratitude for industry working to provide this technology to a broader audience. We know that not everyone wants to build their own system, and many ARE happy to wait for a system that will be in warranty, and comes straight out of a box, rather than cobbled together.
I say this knowing that same courtesy is not always afforded to the DIY world from industry, and I can point to every single time someone from a company developing a commercial automated system claims their systems are safe – implying that those of us in the #WeAreNotWaiting world are all cowboys not concerned with safety.
I would so have loved to have heard Roman really highlight all that his system has to offer, and what sets it apart from DIY systems, and how it is one more choice that will be available to PWD, rather than put down the DIY movement. I am all – ALL – about choice and love the idea that with this choice comes a better chance for us to find the tech that works best for our personal circumstances.
We don’t need to be defensive about ‘the other’ in diabetes technology. We need to acknowledge that there is no one right, perfect choice. DIY is certainly one of those choices, and as we heard sprinkled throughout the day, has been life changing for many people. But it is not the only option out there, and few people in the DIYAPS world would even suggest that it is. I guess perhaps that is what challenged me about Roman’s talk – he did seem to throw DIYAPS under the bus a little when it would have been far better to suggest it was just another bus route people may like to take.
So how could this event have been better? Well, I wish it had been part of the official EASD program. There is a lot of opportunity for HCPs to learn from the user-led tech community, and this extends to technologies and treatment options beyond DIYAPS. Reinforcing what is an overarching fact of life with diabetes – that all diabetes is DIY – is important for all working in diabetes to remember.
While DIYAPS technology may be at a far spectrum of the whole DIY diabetes idea, having HCPs and researchers listen to just how diabetes impacts on daily life, and the decisions we need to make is critical in their approach working with us.
Panel session to finish the day.
DISCLOSURES
My airfare and part of my accommodation to attend EASD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place all of Monday. Another night’s accommodation was covered by Novo Nordisk as I attended their advocate meeting on Digital Health Technologies.
I am part of the OPEN Project Consortium. I did not receive payment for my involvement in the Hacking Health event.
While my travel and some of my accommodation costs have been covered, my words remain all my own and I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference. As ever, profanities are also all mine.
‘I’m bored with diabetes. So, so bored.’That was how I opened last week’s appointment with my endocrinologist.
She nodded at me. I’m sure it wasn’t the first time someone had commented on the boring nature of diabetes. It’s programmed into the DNA of the health condition we live with. She waited for me to go on (she really is the master of not filling silences).
‘What can I do to shake things up? What should I be doing?’
It was a repeat performance of my last appointment back in February. I walked in with this need to shake things up; do more; be more proactive; add stuff to my routine.
My endocrinologist, thoughtful as ever, waited some more for me to finish my brain dump. So, off I went…
‘I am doing so little to manage my diabetes these days. I’m not burnt out – that’s not what I am saying at all. I’m not doing that thing where I pretend I don’t have diabetes. I am doing everything I need to do, except these days, it seems I don’t really do much. Loop keeps Looping and I really feel that my only input is making sure there is insulin in my pump and a working cannula and sensor in place. I bolus as required.
‘But it doesn’t seem enough. There was time each day that I had set aside for diabetes that I don’t need anymore because managing rollercoaster glucose levels, or responding to countless alarms, or managing those hypos that resulted in multiple lost hours…these things just don’t happen anymore. Or if they do, they take so little time to address that it almost seems insignificant.
‘I feel like I am not doing enough. So…what can I do?’
When she knew I had finished sharing my stream of consciousness, she looked straight at me and said: ‘You do exactly what you are doing. There is nothing more that I would suggest or recommend that you do. You asked last time about adding some different therapies to your current management, but there is nothing that would suggest any benefit to that.
‘If you were not looping and doing what you used to have to do and all that entailed and telling me what you are telling me: that you are feeling well, you feel your diabetes is in a good place, you are not feeling burnt out and that you are happy with how and where your diabetes was tracking right now…and if that was accompanied by the A1c you are running, I don’t think we would be having this conversation. I doubt that you would be asking what more you could do. You would know that you are meeting all the targets you want to and are feeling overall great about your diabetes.’
Of course, she was right. That was my situation two years ago: I was feeling fine about my diabetes (or as fine as I ever was going to) and was thrilled with my A1c (which wasn’t as low as it is now). And I certainly wasn’t thinking that I needed to do more. I accepted that I was putting in the effort and for once was seeing the outcomes I liked. The idea of adding more tasks to my diabetes life would never have entered my mind!
‘I know you are right,’ I said to her and then mentioned the talk I’d heard at #DData last year when fellow DIY-er, Justin Walker, said that since using OpenAPS he saved himself about an hour a day. ‘An hour a day. That’s a lot of extra time I didn’t have before. I don’t know what to do with it,’ I paused. ‘Maybe I should take up knitting.’
‘You could learn a language in that time,’ she suggested, helpfully.
It has me wondering if this is a thing for others who have embraced the DIYAPS way of life. Have you all just embraced this renewed freedom and extra time and run with it, or are you too wondering what to do with your hands?
Nineteen years of constantly focusing on the minutiae of diabetes, and second guessing myself and having to DO SO MUCH diabetes is a really hard thing for me to unlearn. The last two years have been really, really different. Who knew that my response to finally getting that break that I so desperately wanted would be to not know what to do with myself and want to do more?!
Since Looping, diabetes has taken a back seat in my life because the daily demands are far fewer. Sure, the emotional toll is still somewhat there – especially when it comes to the fears I have about the future. But the daily frustrations and intrusions are not there. And that means that as well as having to physically do less, I think about it less. I had no idea just how much that all took until I stopped doing it.
I get that this is coming from a position of extraordinary privilege, and feel free to file it away under not only first world, but also first-class problems. And ignore me. (Seriously, I thought of myself as insufferable when I was having conversation last week.)
Or send me knitting patterns. In the meantime, I’ll be over in the corner conjugating irregular verbs.
Diabetogenic 