30 Days of Looping
I decided to document a 30 day period in my looping life, when I was pondering life before and after looping and questionning whether it was the looping or the use of 24/7 cgm that was having the most impact on my HbA1c's. I also wondered how much of my results were really in my hands and how much of them were from technology fails.
The green-yellow-red dashboard above gives a partial answer. The red squares are the days when site fails or data errors from either the cgm or the apps, caused havoc with the outcomes of the loop system. The yellow days tend to show carb entry miscalculations causing errors, (although not necessarily bad ones) and the green days are perfect or very nearly so!
I've been looping with the ios Loop for just over 12 months. My 'rig' consists of an Apple iPhone with Loop and Spike apps, a 'Rileylink' transcoder amd Dexcom G5 sensors running with one of Simon Lewinsons' rebatteried & rechargeable Dexcom transmitters. I put my rig together following the Loop Docs https://loopkit.github.io/loopdocs/ and with the help of the Aussie Aussie Aussie Loop Loop Loop (and varioous other) facebook communities. My journey started after lurking for some time on the original Looped facebook community, then meeting another successful looper 'in the wild', at a HypoAcT1ve run, walk, ride meet. Since that time I have been actively involved in hosting 3 Melbourne 'Loop' meetups and many, many conversations about Looping.
Since using Loop, I have reduced my HbA1c from a consistent 7.2 - 8.2, down to a steady 6.7 consistent over the 12 months.
Friday, 7 Dec 2018.
Saturday, 8 Dec 2018, 1:25 pm AEDT
Melbourne Meetup
So after a disastrous night on Friday night and the fish and chips episode, Saturdays’ chart is much better behaved. It was the day of the third Melbourne Looping workshop and really reflects the fact that all I ate during the day was eggs for breakfast and a salad for lunch.
Today we ran the 3rd Melbourne Looping meetup. There is so much interest both from within the T1 community and from the HCP community. As we waited downstairs at Starbucks, for the days attendees to turn up, I met Carolyn from Melbourne Law School at the University of Melbourne. Carolyn and her colleagues are scoping the background for a project which is looking at the regulatory environment around Looping, particularly with regards to Parents who are managing looping for their children. She was interested to hear a number of us explain that, if the loop environment fails, the insulin pump will revert to its pre-set basals and you simply revert to pumping manually. The real risk in this environment is the insulin itself and many of us had stories to tell about times when we had 'overdosed' ourselves unintentionally and had to manage the consequences.
We also had an interested Endocrinologist 'Phil' attend today & he was blown away when David & I put our Nightscout graphs up on the screen. I'd been a bit embarrassed about mine, because it's currently showing only 71% in range! Phil said that compared to what they normally see, that is brilliant.
Today we ran the 3rd Melbourne Looping meetup. There is so much interest both from within the T1 community and from the HCP community. As we waited downstairs at Starbucks, for the days attendees to turn up, I met Carolyn from Melbourne Law School at the University of Melbourne. Carolyn and her colleagues are scoping the background for a project which is looking at the regulatory environment around Looping, particularly with regards to Parents who are managing looping for their children. She was interested to hear a number of us explain that, if the loop environment fails, the insulin pump will revert to its pre-set basals and you simply revert to pumping manually. The real risk in this environment is the insulin itself and many of us had stories to tell about times when we had 'overdosed' ourselves unintentionally and had to manage the consequences.
We also had an interested Endocrinologist 'Phil' attend today & he was blown away when David & I put our Nightscout graphs up on the screen. I'd been a bit embarrassed about mine, because it's currently showing only 71% in range! Phil said that compared to what they normally see, that is brilliant.
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Sunday, 9 Dec 2018, 9:23 pm AEDT
Sunday night. I’ve started the day at around 7.7 and had a couple of slices of toast for breakfast then did the big dog walk at the beach park followed by general house work, a salad & roll-mops lunch with Gill and a solid working afternoon in the garden with her. I had reheated lamb chops and baked vegetables for dinner, and have just topped it off with a nice mini ice cream. I’m interested in the way my level still seem to fluctuate so much although that possibly because I’m looking at the compacted 24 hour line. When I smoothed out to a three hour align it often looks almost perfect!
Monday, 10 Dec 2018, 7:14 am AEDT
Technical frustrayion: "Things that don’t go bump in the night" or, ‘Things’ with loop that create
intense frustration. When loop inexplicably and unexpectedly stops working overnight for six hours, leaving
you with your standard pump basal rate and no extra to bring your levels down.
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Monday, 10 Dec 2018, 9:27 pm AEDT
More tech glitches. It’s never what you expect. I ate one of these little cupcakes at about 10
this morning, and didn’t bolus for it because it was one of those tiny ones.
The gap in the readings is about the time when I ate it. I don’t know why Spike
dropped out at that particular point, however it obviously wasn’t a problem.
Now later in the evening and hour and a half after eating dinner, my levels have
shot through the roof. I think it was because I had unannounced carbs at 6 PM
before going to the gym and doing a workout. The exercise function in loop,
kept me stable while I was at the gym, but obviously the extra carb load, added
to the total of dinner carbs has given me a double whammy.
Tuesday, 11 Dec 2018, 6:12 am AEDT
Now we will talk about pump site failures and changing pump sites at 3 AM in the morning. (everybodies favourite night-time occupation). I put a new site in just before dinner. It was a low carb dinner only a total of 30 carbs. By midnight, I was up at over 12 and eventually, when I hit 15.4, I decided that it was a site failure and I needed to put another new site in.
Tuesday, 11 Dec 2018, 10:19 pm AEDT
From a site fail last night to very spotty reporting on Spike as I cycled home
this evening, it has not been an easy day. This is the reality of trying to
loop. When everything is working it is such a wonderful thing, but when you have
spotty or incorrect data coming from your CGM, you are likely to get incorrect
dosing through loop. If that is occurring at a critical time such as when you
are exercising there is huge potential for things to go wrong.
Wednesday, 12 Dec 2018, 10:22 pm AEDT
--> Now this is what looping is supposed to look like. 90.9% in range and an A1c Of 5.7. Mind you, I’ve been trailing lows all day and fighting off hunger. They say you get used to lower levels eventually, but with that comes the risk of being less hypo aware. Nothing special about today, other than that I had that big bike ride yesterday, 30 k’s coming home against a headwind. My current level of fitness isn’t that good and I was quite exhausted last night, taking a couple of painkillers, to help me sleep and recover. Interesting I didn’t have a low crash overnight. But sometimes, after endurance style exercise, I find the low comes up to 72 hours later.
Thursday, 13 Dec 2018, 9:25 pm AEDT
Late start to my working day after a good sleep. Spike is still doing some
funny / weird dropouts that can be followed by a high if Loop has been
unable to respond. On the far right of the Spike photo you can see a sudden low
that I experienced around 9 PM. (red dot). The CGM did not report it accurately with Spike
reading at 5.7 and a fingerprint telling me I was 3.7. The late start to the
working day resulted in a late finish and late dinner. I was snacking on fruit
before leaving the office at 6 PM, but it wasn’t enough to carry me through
commuting home and prepping dinner. Generally, at the moment, when I calibrate
for Spike it is extremely close, so I don’t know why the discrepancy this
evening. Sometimes the readings get caught up in a time-lag, and show up 20
minutes later, but not this time. Spike never saw it. It is really lucky I am
still hypo aware.
Friday, 14 Dec 2018, 7:19 am AEDT
Friday, 14 Dec 2018, 10:15 am AEDT
Well, that didn’t work. OK I’ll admit it’s set-change time. No improvement
after the initial drop when I went for a walk. Now, the question is, “Was it
the site, the set, or the insulin?” Yes I have to admit, I had used some
insulin from a bottle I found floating in my travel bag from my road trip in
October! I have now loaded todays' new pump set with the insulin that I was using
before the lot I put into last nights' set change.
Friday, 14 Dec 2018, 1:28 pm AEDT
Today’s trials continue. Waiting, waiting for those levels to drop, I go out
to the shops. After an hour I feel headachy and sick. With Spike reading at 9.4,
I do a finger prick check. 5.1! Whoopsie! Record a sub
optimal calibration for Spike and go find some food quick!
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Saturday, 15 Dec 2018, 11:48 am AEDT
Chasing Perfection
What a difference a day makes! 24 hours on the roller coaster. This perfectly indicates the frustration of Looping. I know it can be almost perfect, but when technology or medication fails, it can be a nightmare. I think those of us who are looping or even just trying to refine levels through tight response to cgm data, are all chasing perfection. Why are we chasing an imperfect, improbable goal? Why do we couch it in terms of being ‘perfect?’ We know that even ’normal’ people (whatever that means) do not have flat line bgl’s. They spike after big carb hits, it’s just that their home made insulin works better and in a more attuned manner with their personal metabolism. They don’t get crashing hypo’s like we do, but they can go low and have to sit down and have a cup of tea and a biscuit. Why do we beat ourselves up every-time our bgl moves in or out of range? Why do we chase a ‘perfect’ flat line, when it is an unrealistic goal?Sunday, 16 Dec 2018, 10:03 pm AEDT
Today, it's choosing to sit up at about 8 to 9 most of the day. This morning I had
to go to Richmond for the HypoAcT1ve Christmas party. I had a no carb breakfast
of egg and bacon, then I caught the train to Flinders Street, and rode from
there. only about 8 km. You will notice that around 10:30 AM there is a red dot
under the green dots where I did a finger prick check and found that rather
than being 9.3 as the cgm was reading, I was 5.4. Knowing that I was going to
ride a bit further on the way home I told loop I was only eating about 10 g of
carbs and accepted the recommended bolus. I had two pieces of brown bread,
about 26 g (if you follow the packet), and a burger, another egg and a sausage.
I quickly shot up to 12, but by the time I’d ridden 19 km then caught the train the rest of the way home, I was down to 8 and
rapidly dropping. The rest of the day seems to have gone okay, I actually had a
sleep in the afternoon, and woke feeling a little low. Again, the CGM was
showing 5.4 and a finger prick came in at 3.7, so I treated and got ready to
go out for another Christmas party, This time a full Christmas dinner. I seem
to have survived okay, we will see what happens overnight.
Monday, 17 Dec 2018, 9:41 pm AEDT
Another day of near perfection, LOL. With 94.7 in range and an A1c for the
day of 5.9, this is the stuff that has all the endocrinologists in a tizz.
It’s not without attention, that it is achieved, though. I am still
continuously checking and adjusting and decision-making. For instance, I had
an exercise class at 6:45 this evening. I didn’t want to eat dinner before it
as I didn’t have enough time to digest properly, in between getting home from work
and going to the class. But my levels are running a bit low and Loop was
predicting that they would drop down to about four. I knew if was exercising on top of that, it would mean a real low. So I ate 2 Jelly snakes on
the train comming home, then about 15 g of some biscuits and cheese
40 minutes before the class, and put loop into exercise mode. I came through
the class sitting on six, and still avoided the dreaded Spike after the class.
So far so good, let’s see how I get through tonight.
Tuesday, 18 Dec 2018, 9:22 pm AEDT
Wednesday, 19 Dec 2018, 11:23 pm AEDT
Thursday, 20 Dec 2018, 10:32 pm AEDT
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Friday, 21 Dec 2018, 10:05 pm AEDT
I've got no idea what happened to Saturday, 22 Dec 2018. :-)
Sunday, 23 Dec 2018, 12:27 am AEDT
I think this sensor is getting tired. What looks like a fabulous line is
a bit of a lie. Look to the right of the image and you will see three red dot
is where I have done blood test just to check. And while the last one is just
about perfect way to earlier ones were way out.
Sunday, 23 Dec 2018, 11:43 pm AEDT
Monday, 24 Dec 2018, 10:38 pm AEDT
Here we are, it’s Christmas Eve. After 21 days it was time to change the
sensor this afternoon, after reading 7, While I was at the gym and having a
hypo, Followed by second hypo pre-lunch time when it was reading 8.4, then reading
4.4 all through the middle of the afternoon, when my levels were closer to 8. "Time to go", I said to it. Sadly, I’ve been hoping to have my Santa Claus CGM patch
last through to Christmas day. But the risk of such out of range readings on loop
just isn’t worth it.
Tuesday, 25 Dec 2018, 7:55 pm AEDT
Xmas day. It;s a challenge for all of us. As usual my lassaiz faire attitude got me into trouble. Think I got the carb count wrong on the Xmas ice-cream, or maybe it was the smashed pav & berries? No, wait! It must have been the shortbread...... 🤣🤣🤣🤣🤣
I posted the above photo and comment on Facebook and this, below, was one of the responses I received:"❤️ Thank you for posting this! It helps us because we've had a few end of year events for our kid that have been similar... So good to know we are not alone! Have a lovely Christmas night!"Wednesday, 26 Dec 2018, 11:26 pm AEDT
One of the things I really love about loop, is watching the way the insulin
profile tracks the carbohydrate profile. Today was pretty good despite the ongoing
high overnight, after the Christmas day binging. I had a small spike
mid-afternoon, from some unannounced carbs, and one after dinner, (mashed
potato which I haven’t had in ages), And the dexcom transmitter spike in the
shower, LOL. With an ‘in range’ of 82%, and a daily A1C of 6.5, I’m happy.
Thursday, 27 Dec 2018, 10:28 pm AEDT
Friday, 28 Dec 2018, 10:49 pm AEDT
Sunday, 30 Dec 2018, 12:08 am AEDT
WTF? This morning and right through until after lunch it was just one
lurching low after the other. I had a massive crash during Pilates, even though
I had put the exercise function on in the loop. It took me half an hour to
recover enough to cycle home, then I had more lows before and after lunch. I
couldn’t seem to get enough carbs in me. Eventually mid afternoon I started to
drift back up. So I thought I’d be clever and have a low carb dinner, diced ham, zucchini, mushroom and tomatoes done with Thai red curry and two desert spoons
of coconut cream. I did also have nine squares of chocolate, according to the
package, that should have been about 18gm. I bolussed for 30g carb in total and
look what happened! Further, it's interesting to note that I got a sudden spike a
good four hours after the meal. I had been on my feet, cutting out a pattern
for a new jacket, and was feeling really tired about 11:30 PM I had checked my
levels at about 10:30 PM and they showed as being 11 and I gave myself one
unit, because they had been up for three hours. Next thing you know they’ve
shot up to 12! WTF!?
Sunday, 30 Dec 2018, 10:10 pm AEDT
Another disappointing day. I started on the wrong foot by having unannounced
carbs for breakfast, after yesterdays fiasco with the lows in the morning. I
still just don’t trust loop. I think the instinct to keep myself safe, is just
so strong, it overrides the thinking brain. At midday, I started on a long drive
to Warragul, for a three-year-old’s birthday party, followed by a long drive
back home. No activity and too much carb loaded food! I bolussed the correct
amount of insulin, but the lack of activity meant that it was ineffective. A
bit of lawn mowing in the evening got it down.
Monday, 31 Dec 2018, 11:50 pm AEDT
It looks like I’m back in range again. I don’t like going to bed at a level
below six, but I’m trying to tough it out and avoid that middle of the night
peak. So I’ve switched on the predictive function in Spike. That’s the purple line
to the right of the graph. I’ve eaten 6 g of fast acting carbohydrate and it’s
telling me that it will only raise my levels to about 4.7 over the next two
hours. I have to be careful because loop takes its information from the Apple
health app. Normally the Apple health app gets its carbohydrate information from
the loop. If you enter carbohydrates into Spike, you need to make sure that Spike is not writing them to the Apple health app, because then they might turn
up in loop and affect the insulin dose.
Tuesday, 1 Jan 2019, 9:05 pm AEDT
Tuesday, 1 Jan 2019, 10:00 pm AEDT
This is interesting. Spike has a predictive curve of 2.2, whilst loop has a
prediction of five. Which one will be correct? And do I want to test it out by
doing nothing? My stomach is telling me that Spike is the correct predictor. I
have enough insulin on board to get me into trouble. I think I will do
something about it. 6g of carbohydrate will fix it.
Wednesday, 2 Jan 2019, 10:04 pm AEDT
I survived hte predicted lows overnight. Here is another instance of changing to a new site and experiencing insulin
resistance for the first few hours. I inserted a new set when I woke this
morning at 6 AM. I had a normal breakfast and bolussed correctly for it, and
undertook my normal dogwalk, and walk to the station to go to work. Happily it
eventually settled down, but then later in the day I set off a yo yo reaction
by overreacting to a low mid afternoon, then tried to get my levels stable
again before I went to exercise class. That turned into a fiasco because I
hadn’t booked the class properly. I decided to go riding for an hour instead, then
had another low while riding,. That one was a worry because the G5 was only
reporting me at 6.5 and the fingerprint check showed three. I am so thankful
that I am still hypo aware. It took a while to recover, which was awkward as I
wanted to continue riding. I got back on my bike before I was ready, and then
felt very unsteady. The final data on this shot, shows a typical shower
Spike, a false reading that frequently occurs when I have a shower. I
fingerprint checked, and it is actually sitting at 8.5. So the projection curve
should come back A couple of points lower.
Thursday, 3 Jan 2019, 3:01 pm AEDT
I lost 24 hours.
I bought a new iPhone today. Didn’t have it well enough set up to do a photo
and upload.Friday, 4 Jan 2019, 2:04 pm AEDT
I am totally and utterly infuriated with the Apple process for moving all my
data and apps to a new phone. I have spent hours firstly trying to sync my new
phone via iTunes with my old phones data, then when I couldn’t get that to
work, I left my old phone hooked up overnight uploading from the old phone to
iCloud. Then spent this morning trying to sync or restore the new phone via
that - but is simply doesn’t want to see the old phones data. I spent hours
reloading and setting up Spike, then it wanted to restore from the cloud and it
dumped all my settings and the G5 pairing. GRRRR
Now I have to go back through the bluetooth pairing request and the sensor
start up FFS!Saturday, 5 Jan 2019, 12:33 am AEDT
--> I posted this image to track the broken data as I tried a number of times to access the old phone’s back-up in iCloud. Of course every time I did that, it would re-set all the apps and I’d have to start again.
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Saturday, 5 Jan 2019, 10:01 pm AEDT
Sunday, 6 Jan 2019, 10:04 pm AEDT
In summary
What have I learnt?
1. Keep a close eye on the technology2. If you think there's something wrong with the site, address it immediately. don't wait.
3. CGM is amazing, but also fallable
4. Loop is only as good as the data you feed it.
5. It's not set and forget
6. It's worth the steep learning curve
7. At this point in time, no technology is going to give you a working pancreas
8. Keep records, check data, reflect and make changes
9. Chasing perfection will drive you nuts
10. We need #CGM4All
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