When it comes to diabetes data, I am on Cloud Nine these days thanks to finally being connected to the whole do-it-yourself CGM in the Cloud/Nightscout system that allows me to easily display and share my BG numbers and make better decisions based on that information.
Hey, I even have a certificate that says so!
I've been connected to this new technology and part of the CGM in the Cloud community for nearly two weeks now (starting on Halloween). My first impressions as a Nightscout Newbie: it was less complicated than expected and it's keeping me more accountable and better-managed, for sure. At the same time, I've had to readjust some of my views on how I feel about others having access to my personal data, about carrying diabetes cases and devices around with me, and even what kind of clothes I wear in order to accommodate all this new technology in my life.
Nightscout of course is the hacked system that connects a Dexcom G4 receiver to an uploader phone by a special cable or two, and then sends that data to a web database and another online site where the data can be viewed, or any other device that I decide to connect to (some parents even view their kids BG numbers on their big-screen TVs!)
If you happen to remember my post from mid-September, you'll recall that it was a Hypo That Changed My Mind about using this system. I thought, 'Sure, sharing data is a nice idea on its face, but I'm not sure about the hassle of setting up a DIY reverse-engineered setup that isn't pre-packaged for my convenience and comes with no product guarantees whatsovever.' Was it worth the time invested, and the potential risk?
Yes, it has been so far.
Because we decided that catching hypos before they get bad is HUGE for my wife and I. We realized that if Suzi had access to my data in real-time when we weren't together, we could both have a level of security we've not had before. And I'd have an even more immediate way to get my CGM data "in my face" so I'd be forced to respond when most urgently necessary.
Here is how it's all working out, so far:
Setup: Thankfully, this was not as complicated as I feared, mainly due to all the great support that the Nightscout community has created, including easy-to-read step-by-step instructions, How-To videos, and very active forum and Facebook pages where you can search for specific topics or ask questions of the 8,200+ members. Yes, you have to follow the guides pretty closely and it can be confusing if you don't pay careful attention to what you're doing, but I found that any issue I came across was already addressed somewhere in the aforementioned resources. All in all, it took me about 3 hours to setup from start to finish, and that was with intermittent breaks. So realistically, if I'd powered through in one sitting with no breaks it probably would have been significantly shorter.
I have my Dexcom CGM connected to the prepaid Moto G Boost uploader phone by a retractable cable and adaptor, because it was the best to be able to keep the cable short and adjust the length if needed. Plus, it allows me to experiment with different cases to see which might be best for me long-term. I like not being limited to one specific style of case, or reliant on that one setup if something changes or goes wrong.
Cost: The total damages for us were about $400, but that was only because of our personal preferences -- the biggest portions being $80 for MotoG uploader phone, $100 for the white Pebble watch that Suzi wears, and $200 for a Pebble Steel watch for me. Originally, we only planned to get one watch for Suzi -- because she cannot use a phone at work, and having access to my data while there was a key reason for all this. So her watch was a necessity for us. But then after setup, I realized that it was more difficult to view my G4 receiver and react to the normal CGM alerts. Plus, I didn't want to keep unhooking the receiver because of potential risks of damaging the fragile USB port, and I didn't want to be forced to unpack the new receiver I'm keeping in the box on stand-by as a backup if needed. So a Pebble watch became a must-have for me too in order for me (the patient!) to adequately see and respond to my own data with Nightscout.
Portability: This was a big issue for me, because as I've noted here many times, I don't enjoy carrying a bag or case around -- unless I'm with Suzi, who's kind enough to carry my gear in her purse. But I didn't want to rely on others, so we needed to make sure that carrying my Nightscout rig around wasn't going to become a frustration that would eventually push me away from wanting to use the system.
I searched High and Low (ha!) for that perfect case, but couldn't find one that fit what I needed or was designed the way I wanted: portable enough to take on-the-go, and that could be clipped to my belt. Mostly, I didn't want to be on a leash and have to stay within a certain range of my bag or coat if that's where my rig was stationed. At first, I bought a handy 3D printed case that kept the phone and G4 receiver together, but it didn't have a belt clip and as it turned out, the special cable I bought was too long and stuck out but needed to be protected too, so I decided to find a better option.
At first, I MacGyvered an old meter case that zips up and has a velcro belt loop. We cut a little hole in the zip-up mesh part of the case and put the Dexcom inside, with the cable feeding through the whole and connecting to the MotoG uploader phone velcroed to the other side of the case. Once zipped up, I could carry this around pretty easily by hand, or if need be, use the clip we hooked to clip to my belt (even if it's dangling from my waist).
That wasn't perfect either, but it was better than nothing. Still, I wanted a case with a real belt clip. I reached out to the great D-Mom Donna Annese who runs the diabetes case company Tallygear, who had designed a Nightscout case and agreed to create for me a custom neoprene case that's a bit larger to fit both my G4 receiver and uploader phone plus the cable! It has a window to view my G4 receiver, and there's a flap you pull over the end to hide and secure the cable inside. And the best part: It has a rotating belt clip! The only thing it doesn't have is a way to attach a backup clip as a support if the case becomes unclipped or the existing clip broke off. But otherwise, it's pretty perfect. Thanks so much for this great case, Donna!
Clothing choices: I am not a guy who wears clothes with a lot of pockets (aside from those on my jeans or khakis). But Nightscout has made me reevaluate my choice in clothing -- for the simple reason that I don't always want to clip my case to my belt, and it just doesn't fit in a normal pants pocket. So I've found myself wearing more hooded sweatshirts or a light windbreaker even indoors, because they have those great front pockets. There've been a couple times when I was "foiled by pockets," or the lack thereof, and this has become something I am now paying more attention to when getting dressed in the morning. Very interesting dynamic.
Alerts: The Nightscout system by default alerts you whenever you go below 80 or above 180, something that is particularly frustrating for me as I prefer my Dexcom settings that are set for 70-200. Especially at night, when I sometimes keep my blood sugars higher and do not want to be woken up if I hit 201 mg/dL. Thankfully, there is a way to download a "sleep face" to turn on, and that "Quiet Mike" mode allows me to silence all the notifications. There's also a way to go into the coding and make some of your own desired changes, but that is a little over my head and I haven't had the time to explore that yet. Really, I wish there were an easy way to turn off just the High alerts but keep the Low alerts on (as Dexcom allows). So now most of the time when I'm not teetering on Low or out and about by myself, I disable all the notifications just so they don't bug me.
Data-Sharing: In the first days of getting connected, Suzi and I got into a spat about access to diabetes data and whether I should be allowed to change the notifications when we get alerted. For the record, I was experimenting with her Pebble watch (it was before I'd bought one for myself) to see what you could adjust. Unlike my own frustration with the alerts, Suzi doesn't mind being alerted all the time and said she actually enjoys knowing where I am at, blood-sugar-wise. Our conversation escalated and at one point, I blurted out: "It's my CGM data, not yours, so I get to decide who has access and what that access should be!" Oops. We made up and laughed about it later, but it brought up the important point that shared patient data access is a sensitive issue and should be carefully evaluated, with an eye to balancing the needs and desires of everyone involved. And for the record, Suzi has her watch set to get all of my alerts while mine is often set to "Quiet Mike" mode.
This data-sharing with Suzi is going to be critical in just about a week, when I travel to California for my first-ever visit to the DiabetesMine Innovation Summit. We wanted to make sure our Nightscout system was all setup in time for that three-day adventure. I have a tendency to go low while traveling, especially overnight when I'm all by myself in hotel rooms. In the past, even though I've let my BGs run a bit higher at night, I have had some dangerous hypos in which I dropped over 100 points overnight because of intense work schedules, being on my feet more often than usual, little sleep and less consistency overall. So, this is going to be the first test of how well it might work and set the stage for more business travel in 2015.
Better blood sugars: All of the above being said about alerts, I've noticed that my blood sugars are in range more often during the past two weeks and I have seen a lot fewer readings on the Higher end -- most likely just because I am so tuned in to this D-data and staying on top of it. Obviously, the novelty will wear off at some point. But I'm encouraged that this presents a way to have easy access and views of my data at any time I want it, and it's keeping me in check so far. And I have also noticed that just having my CGM data at a glance makes me want to keep my numbers more in-range. That's powerful motivation for me to do better and stay on top of my management. While I have had access to all this trend data already thanks to my Dexcom, this has all led to a surge of interest in doing better.
Nightscout lingo: We've started coming up with our own terms of diabetes D-data endearment, as it were --
- Low-jacked - not in a bad way, as sometimes happens when a low blood sugar hijacks your time, but more along the lines of: we can track my blood sugars wherever they may be, especially those dangerous hypos.
- Azure = Atari - Because the geek in me finds this new-fangled tech as awesome as the original video game system with classic games like Frogger. And yes, at times I feel like a kid again playing with a cool new game that just happens to help my health.
- Burn phone - Yep, I feel like a spy and any spy knows you need a burn phone in order to do your job. We each have one, and we communicate secret data that often only we truly understand the meaning of.
- My Dick Tracy watch - This reference may date me, but I still think of my Pebble steel as being like the Dick Tracy wrist radio made famous in the 1950s.
Community Support: As mentioned, there are now more than 8,200 members of the Facebook CGM in the Cloud community. So there is literally always someone online who's able to help if you have a question. And you can search the timeline for any specific issues you might be experiencing, whether it's buying the right phone or cable, an error code you see, or just finding a case that fits your situation best. During the first week of November, one of the group administrators posted a note that 15 people are now volunteering for the support team, with round-the-cloud help for installation or anything else. To me, this is almost more valuable than the customer service you get from an established diabetes device company because you don't have to call during specific hours, navigate to the right department, or go through pointless background questions and support before getting an answer that may not even work. Sure, there are no warranties with Nightscout or the help provided, but you know that going in, and being able to reach the real people actually using it and not just reading off a script is invaluable in my mind.
The newly-created Nightscout Foundation is now off the ground and working to get even more of an infrastructure in place. This came about just within the past month, and the names attached to this foundation are those you may recognize as being key developers or visionaries in the #WeAreNotWaiting movement.
I am very excited about where this all is going, and can't wait to see more materialize as the Nightscout community integrates additional features and continues to "reverse engineer" more diabetes devices. We're also keeping a close eye on the folks at Tidepool, the data-cloud innovators working on device interoperability and ways to bring all of this D-data tech awesomeness together in ways that we need and want it.
For now, these are my initial impressions as a Nightscout Newbie. I'm excited to no longer be waiting, but to have immediate access to my diabetes data in a way that lets my data serve me, rather than the other way around.
Thank you, Nightscout.