Chillingly Familiar Graphs

November 10, 2010 the FDA and NIH held a public workshop to discuss progress towards a semi-automated insulin delivery/ glucose monitoring system.  This workshop was “webcast” meaning anyone with internet access could watch and listen from their computer.

Screenshot from the FDA - NIH Public Workshop This workshop lasted all day, and I was only able to watch a few hours of it.  It was well worth the time to me, and I thought it was pretty cool to be able to get a glimpse of some of the dialogue from all sides.

There are many emotional hot spots around this project, and I’m ignoring all of them for the purpose of this particular post.  What I’d like to talk about is something that hit me hard while watching, and has stuck with me ever since.  It is also closely tied to my last post about those we’ve lost to diabetes.

I think I’d like to talk about this briefly, then stick the fear and sadness back in a box until something else cracks open the seal again.

During the presentation there was a section showing CGM graphs from those who died in their sleep.  It took only a second for my heart to stop and for a cold chill to run through me.  I couldn’t hear what the man was saying, I couldn’t read anything on the screen.

I was stuck looking at a graph I’ve seen a thousand times on my own CGM.

Picture of my Dexcom graph going dangerously low at night.

Of course it didn’t look exactly like mine, but it was close enough to register with me that any of these “cases” they were talking about could so easily be me or you or any of us.  What made me wake up, but these others not?  We were looking at CGM graphs, so they had the same tools I do.

That low I had was long, and at just after Midnight, and it looks like it took me a while to wake up and test.  Just like them.  Except they didn’t wake up.

I was talking to a friend of mine from the YMCA yesterday.  He’s a pastor at a local church here, and we were talking about prayer.  He asked me about my prayer life, and I shared that every single day I thank God for waking me up again.  I talked about the deaths that have been on my heart and mind lately, and how diabetes can sneak up and take us so quickly and quietly in our sleep.

He thought a bit, and to his credit was really trying to understand the layer of terror that diabetes wraps us in as we go to bed.  He tried to liken it to walking outside and being killed by a bus, or getting in a car accident due to someone else’s bad driving.

In the moment I thought that yes, that sort of fits, but it’s not quite the same.  It doesn’t carry the same weight for some reason.  But why?  A freak car accident is just as terrible as a nighttime low, maybe worse.  I don’t know.  I just can’t put my finger on why that analogy doesn’t sit well with me.

I think I should feel safe if I’ve made it through the day into my bed.  I’ve managed to avoid all of the hazards out there and am safe now.

But sometimes it’s the scariest thing in the world.

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13 Comments on "Chillingly Familiar Graphs"

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4 years 9 months ago

In the only published graph I’ve seen of a guy who died of a low in his sleep while wearing a CGM, the monitor in question was an I-Pro. It was blinded, and it did not alarm.

4 years 9 months ago

Thanks Jonah.

I don’t have any details on what was used for the presentation I saw, but it seemed to me they had two or three examples. I’ve seen the one you are talking about in Vol 16 No.2 March/April 2010 issue of Endocrine Practice.

I think my graph looks a lot like that one too. There’s even a little kick upwards similar to the noted callout listing “Possible glycemic response to counter-regulatory hormones.”

4 years 9 months ago

ahhh %&****&^^%&&***!! thanks scott. this scares the crap out of me. especially since i am now deep into the throes of not being able to feel lows anymore. and “low ” and behold i dont hear the alarm of the cgm like i was able to before.
“hey d gods? i was only kidding about what i said when it was wrong and waking me up! really i didnt mind.i had to get up at 3 am.”

all day long the d is there lurking surprising leaping over tall buildings.its not right that it interrupts the time that is for rest… Read more »

4 years 9 months ago

Wow, Scott. Seeing the CGMS graphs of people who didn’t wake up…I think that would hit me like a sledgehammer, too. Your graph is so scary, and even more so because uh, it looks like it’s common to all of us with Type 1. I guess I was living in a la-la land before I read this post, telling myself that when I wake up from a low (and I always have, so far) that I can’t have been low for very long. Maybe 15 minutes, maybe half an hour. That’s usually how long it takes… Read more »

4 years 9 months ago

Some weird thoughts…….To me as a fellow T1 the bus accident doesn’t feel right because most T1s in a sense, are a cautious people, we look both ways every time before walking into the street by monitoring our blood sugars, calculating carbs and insulin, every minute, every hour of every day…..How about the analogy of dying from a brick falling out of the sky?

The other aspect comes from the “normal” public totally understanding and sympathizing for a bus accident death and treating a T1 death more along the lines of “another inattentive diabetic died in their sleep”. … Read more »

4 years 9 months ago

That looks like Sugar’s graph from last night. I didn’t hear it. Neither did she. But words can’t describe the fear that races through my heart when I realize it’s been bottomed out for an hour – or 2. Finger stick revealed 107. Sigh of relief.

Until the next night.