Libre in to a CGM.. with a little help from Nightscout.
If you talk to type 1’s every few years often more they stumble on a way of managing their diabetes that has tangible benefits. Sometimes that is due to technology, other times its education – DAFNE, insulin pumps, rolling back a few years just the idea of blood glucose testing, or a new type of insulin. I kind of feel like I hit one over the last couple of weeks. Only time will tell if its just gimick or will make a difference but it does feel quite amazing.
In the dawn of testing with Leeds Met uni, I was desperately trying to get some kind of Continuous Glucose Monitoring working. The cost of buying in to Dexcom was in the £xxxx’s and to be honest I really liked the Libre – its reliability and that it didn’t require calibrating everyday. So earlier in the year I worked with a couple of people to pull the data off the Libre in real time and pushing it in to a system called Nightscout.
Nightscout is a community that has developed a way of pulling data off CGM’s and publishing it in the “cloud”, the primary motivation was techy parents wanting to monitor their siblings levels on a phone and very soon after on pebble watches. It involved intercepting the data from heavily regulated medical devices and in effect publishing it as a webpage. They coined the phrase “we are not waiting”. A nod to the tech companies who were dragging their feet somewhat (and have since upped their game).
The idea was to use this same system but push libre data by reading the NFC sensor, sending it via bluetooth to a phone and uploading it. That was the idea.. well a summer of events got in the way, as well as a few hardware and software problems – I learnt huge amounts but was soon over taken by others who got the idea and had better skills.
Thing was some of these solutions didn’t look pretty and the idea of sticking bits of velcro to my arm didn’t fill me with excitement. Then someone realised you could take a Sony smartwatch and use this to take the readings – it was still a bit blue peter with double sided tape and the watches were £200. However in the last month the price dropped on the watches to £100 and some guys in italy came up with a case that made it possible to leave it on your arm.
All was not smooth though – the watch required some firmware changes and faffing to get the NFC bit working. A few hours of meticulously following instructions of the internet and interpreting lines which clearly the author thought surely everyone must know how to push a file on to a watch.
That moment when you see your blood glucose pop up every 5 mins on your phone.. then on a website.. then on a watch.. then on my wifes phone.. you realise I am properly connected to the internet now! For me in my little world one of the game changers is that I can also change the interval right down to 1 min – which is great for running where things can change quickly.. no commercial CGM can do 1 min intervals!
So why the change. Its been possible for many years to see your bank statement on your phone but for me that has not really changed my life, and dare I say unless that is your only device it has not changed many other peoples – so whilst its neat, change has not happened. So seeing my blood sugar on a watch is that really a game changer?
Definately – in the midst of my chaotic life I often just don’t notice when I go low or go high until its really too late to make a change, and then it tends to be extreme rather than a tweak. I find I’m a lot more relaxed about it rather than berating myself for not checking.
The other subtle thing is Lisa my wife also can see my BG’s on her phone, on a little widget on the home page. She has a better idea of where I am at during the day – rather than using that phycic ability that married couples are supposed to have. Getting that gentle text saying, you OK is a nice reminder that I’m not alone.
There are a plethora of alarms although to be honest for the moment I’ve switched them all off – I’m just happy to see where I am at, at the glance of my watch, phone or laptop.
Is it all rosey.. nope – this is really tricky to set up, both Nightscout, the reading watch and the phone. It really is not for the faint hearted, and definitely not for those who first words are – I don’t do IT or can you give me an idiots guide. So to enter this wonderful world you really do have to go in with eyes wide open.
Earlier this week the app crashed that was collecting the data – I didn’t notice and in a lazy way having seen my BG at 17 I chucked in 2 units of insulin with the pump. The data was 2 hrs old.. only after did I realise – 2 units was cautious so I doubt would have caused much worry but still this is not a robust system. It needs a bit of baby sitting.
The watch on top of the Libre is not totally comfortable, after trying various straps I now use a tubagrip but have found that I need to put the sensor lower on my arm to get the tubagrip to stay still. Then its a more obvious (along with the lump on my arm) if I wear a t-shirt. And its a lot more vulnerable to being knocked off by a door frame or someone grabbing my arm. To be fair to Abbott it not be right to go grumbling to them if one fell off.
It is a game changer for me, I’d decided that I wanted to use the Libre all the time so that expense was there. The only other cost has been a watch / case and some tubagrip. The pebble watch was kindly donated by a friend – I may upgrade this to something more discreet but for now it does the job.
Happy days.
PS for technical advice and links head over to the Libre Geeks facebook group.
