Nothing to See Here…

My worst fear now has a name. I think I liked life better yesterday before I knew that.

Go ahead, Google it. It’s real.

It is sort of the SIDS of the diabetic world. It means, “Hell, we don’t know WHY the fuck he died. We woke up, and there he was, dead.” Evidently, about 6% of diabetic deaths in type-1 insulin dependent diabetics under the age of 40 are due to this. That doesn’t mean that you’re safe after you turn 40, that just means your death would be for some completely known fucked up reason (like kidney failure) instead of some unknown reason.

While no one is certain, the experts all think that these unexplained deaths are due to severe nighttime hypoglycemia. In case you’re not familiar, hypoglycemia is LOW blood sugar. If you’re a type-1 diabetic using insulin, you have to be a fucking tight rope walker finding just the right balance of LOW (through use of insulin injections) without going TOO low. The risk of unmanaged diabetes is long term damage to your organs and blood vessels because of HIGH blood sugar. Long time diabetics often go blind, lose limbs, or have organs such as their kidneys fail. Fun stuff like that. So there is intensive management through insulin and exercise and such. But if you manage it TOO closely, you risk hypoglycemia, which poses immediate concerns, the worst being death but other ones may include injuries due to driving or falling while losing consciousness or while convulsing.

There are insulin pumps that many diabetics wear now. When the built in glucose-meter senses that blood sugar levels are too high, whoosh - the unit dispenses insulin to help bring things down to normal. However, these marvels of modern technology cannot and do not correct hypoglycemia. There are some “alarm” units out there that are triggered when the glucose-meter determines that blood sugar levels have reached a dangerous pre-determined level of low, but the truth of the matter is that this issue is MORE than just a number on a meter. I’ve seen my husband completely lucid with a blood glucose reading in the 40s and I’ve also seen him fall on his ass in the middle of the kitchen with a reading of 60-something. This means that the whole alarm thing is fraught with peril (read: potential risk of liability) from a manufacturer standpoint which is another reason, I think, that no one is going this route to help matters.

So, this leaves a lot of diabetics with a big problem. If they do a good job keeping their blood sugar low (in order to live a longer, healthier life), they risk the immediate threat of hypoglycemia.

Most diabetics are pretty darn good at recognizing the symptoms of hypoglycemia while still lucid enough to take corrective action. However, there is this other wonderful little problem called “hypoglycemic unawareness”. This happens in long-standing diabetics where the warning system fails and they don’t feel it coming on. This, my friends, is the reality at our house. In the past 5 years, my husband has become unaware of oncoming hypoglycemic episodes.

This makes for FUN and EXCITING times when we’re out and about. For some reason, it happens just about every time we go to Costco (read more HERE and HERE). While dealing with this is a royal pain in the ass and a major stress, it’s not particularly dangerous. Even though he doesn’t recognize it coming, I do. And while it’s often difficult and it can be embarrassing, we always do get it taken care of.

But if this shit happens at night? No, I’m too ASLEEP to see it coming and he no longer feels it coming. He used to feel it. He would get up at night and go drink some juice or eat a few cookies. These days, it’s a coin toss whether he’ll wake up or not. Several times, I’ve awoken to him convulsing in bed next to me. One time, he did awaken and made it downstairs but then collapsed and convulsed on the kitchen floor (thankfully my older daughter heard him or else we might have faced Dead on Kitchen Floor Syndrome).

I’m a pro now. I’ve given him the glucagon shot myself. I’ve called 9-1-1 many times, even in other cities! And while I really liked having all those big, strapping firemen and paramedics in my bedroom with me in my nightie, the reality of the situation wasn’t nearly as fun as the fantasy might have been.

The thing that worries me, the thing that keeps me awake at night, is leaving him alone. I have to frequently travel on business and he is in bed, alone. Who will hear him? Who will call 9-1-1? Or, occasionally, he’s had business travel. I am scared the whole time. We have frequent check in calls. He promises to allow his blood glucose levels to go a little higher to avoid hypoglycemia. I have taught our 9 year old what to do in an emergency.

Why do I feel compelled to type all this out today? Because my friend Lisa sent an email making me aware of THIS development. This company has tested and is “fast tracking” a medicinal therapy that promises to address this problem. Our problem. The one that haunts me. The one that makes me wonder if one morning, my husband just won’t wake up.

I love my husband more than I can say. He’s the best friend I’ve ever had (with benefits, too). He’s an awesome father. And he’s a diabetic. He’s been one since he was a toddler himself and it’s only been in recent years that his disease has impacted our lives and given me cause to worry. The cure is really SO close. Advances like this VLD-glucagon will help make sure he’s around to dance father-daughter dances at his daughters’ weddings and bounce grandchildren on his knees. If you have a few bucks to spare, send them to the ADA and help us out.

So today in reading the DiObex news story, I realized for the first time that my biggest fear has a name. It’s the ‘Dead in Bed’ syndrome.

I nudge my husband. “This is what I worry about. This is the name for what I fear.”

He says “I’m doing alright. We’ll be fine.”

“Okay.” I say “But if you EVER try to pull that shit, I swear to god, I’ll kill you.”

Is there a diabetic in your life? Go hug him right now. Life is too fucking short.

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