I posted 2 stories on the blog Facebook page this week about
kids dying from T1. One of them was a
little girl who went undiagnosed earlier this year and died because her blood
sugar was so high her body shut down. It’s
a condition known as DKA (diabetic ketoacidosis) and it’s a state many T1s are
in when they’re rushed to the hospital and diagnosed. In many cases it can be treated if caught
quickly enough with fluids and a whole lot of IV insulin. It can also happen after diagnosis, and lands
plenty of T1s in the hospital if they’re rationing insulin due to the costs, or struggling with
high BG due to something like the flu, or because T1 is being profoundly
difficult. Diagnosed or not, it can be fatal. For this little girl named
Arya, her crisis couldn’t be survived because too much damage had been done for
her to survive. The second story was about
a little girl named Sophia who’d had T1D for years, but had a sudden low blood
sugar in her sleep that caused a traumatic brain injury from which she was
unable to recover. Technology worked and her
parents got the CGM alarm that she was low…but the damage had already been
done. This could happen to any of us,
and I’ve seen more stories about this happening to both kids and adults than I ever want or need to see. It could be me one day.
These stories travel in what seems like an instant across
the DOC (Diabetes Online Community). For
parents of Type 1 kids, it’s a constant fear that one of these stories will
become theirs. For those of us living
with Type 1, reactions vary. I see T1 peers who keep the risks top of mind, including those who keep their
sugars higher than they would otherwise to reduce the risk of lows overnight. Some are afraid to go to sleep. Others of us don’t focus on what could
happen. I can’t walk around thinking
that today or tonight could be the day that T1 gets me. I don’t live in a happy fantasy world where nothing bad can happen – I call myself the “neurotic friend” for
good reasons. I also can’t go to
sleep thinking “I may not wake up tomorrow.”
I know the reality. I know that
could happen, that the odds are against it, and that I’m likely going to work
in the morning. But I know that not everyone wakes
up.
Diabetes is a punch line.
If John has 20 donuts…blah, blah, blah.
This disease is not funny. People
are dying because pediatricians, general practitioners and ER doctors aren’t
taking 5 seconds to wonder about a blood glucose level. People are dying because patients and parents don't know they should ask for a glucose test - I don't think that's our job, but if people like me scream at the top of our lungs maybe at least we give someone else a fighting chance. People are dying because they can't afford the insulin and all the things that come with it that they need to stay alive. People are dying because sometimes things go horribly, terrifyingly wrong and a blood sugar level can drop off a cliff nobody knew was right
in front of them. Kids and adults are having seizures and going into comas and sometimes dying and that was never anyone’s plan, just like Type 1
wasn’t in any of our plans to begin with.
I don’t like to bring doom and gloom into the blog because that’s not
me, and because…my parents read my posts religiously, for which I’m
grateful. But I’m not here to scare the
crap out of them or anyone else, because I have every intention of outliving my incredible parents and a whole heck of a lot of my peers. I just want
you to know, and I need you to understand that this is serious, it can be
scary, and it can be deadly. Some weeks
it’s impossible to ignore that.
I don’t know these little girls and I don’t know their families. I don’t know the other people that have died from diagnosed or undiagnosed Type 1 recently either, including the 2 young boys I've also read about that passed away this week. But I know their disease and my heart is a little bit more broken every time I see their stories. I see them way too frequently. Jokes are funny. This isn’t.
