‘This Doesn’t Happen To Me’ — A New DKA Perspective


True story

I don’t feel like an idiot, or inept, or completely out of my mind… but that’s how I imagined people would treat me when I went into diabetic ketoacidosis (DKA) not long ago.

Over the course of 27 years of living with type 1 diabetes, there are no scarier letters than the dreaded D-K-A. Diabetic ketoacidosis; we talk about it like it’s the boogeyman or an urban myth and only in hushed tones like we’re sitting around a campfire telling scary stories. And despite all my best efforts, it happened to me.

I considered myself in great condition, had an A1C around a 6.0 and felt fine! Changed my insulin pump site one evening and didn’t think anything of it—business as usual. For the next 24 hours, I could tell I had a “bad site” because the amount of insulin that would’ve normally brought my blood glucose (BG) back down to a normal range didn’t seem to be working. So I just mashed down on the pump and gave more than normal. Rookie mistake, right?

For about two straight days, I fought rising blood glucose levels and just got so stubborn with it that I couldn’t see what was slowly happening. I was averaging BG readings in the low 200’s and while that didn’t seem like it was too high, it was the length of time that started to concern me. Not drinking enough fluid or getting any electrolytes along with fatigue started to catch up with me.

A losing battle

After two straight days of losing the fight against these rising BG levels, I decided to cave and switch out a new pump site. Not even really sure why I waited so long to do it besides pride and stupidity, I was creeping up into the 300 range. And then it tipped over past the point where I could stop it. I’d been tapped out physically and emotionally, mentally drained, and hadn’t seen that DKA was lurking right around the corner like something out of a “Lord of the Rings” movie.

The feeling of aching in my arms and legs, the taste in my mouth, the dehydration all came to a head and I told my wife Gina that I think I need to go to the hospital… I’m in DKA. She didn’t hesitate, just grabbed our things and we drove to the hospital. It hardly seemed like an emergency and I didn’t want to inconvenience anyone because it was so embarrassing! I’m a card carrying member of the type 1 diabetic community, for crying out loud! I don’t get DKA—it just doesn’t happen like this! Not to me!

We got checked into the emergency room, I explained what was happening, and right away the ER doctors said, “You’re right, you’re in DKA” and they admitted me to the hospital. Ridiculous, right?! I looked down at one point in the ER and saw that I was wearing a Beyond Type 1 t-shirt and tried to explain to the doctor that I just needed an IV with some fluids and I’d be just fine. After all, I have on my BT1 shirt… I’m above the law, right?

The team got me on an IV drip with a lot of potassium, vitamins and electrolytes and then informed me that I’d be staying overnight and possibly longer as they monitored something called the “anion gap” and the pH balance in my blood. The nerve of these people! My pride was at an all time high and I just wanted to go home, even though the amount of pain I was in was at about an 8+.

The doctor asked me how I let my BG get out of control & I told him I typically had great control but my pump site went bad and I got stubborn with it. And then he said something that infuriated me: “All that good control really didn’t help you today, did it?”

I wanted to stand up, rip the IV out of my arm and say (in a Victor Garber voice), “Do you have any idea who I am? I made a freaking documentary about cyclists with type 1 diabetes, for the love of God, man!” But I didn’t say a word. I just swallowed my pride and nodded. I had perspective of something for the first time in 27 years of living with this disease.

A new take

For some reason, every time up until then, when I saw a photo of someone in the hospital with DKA or levels that are out of control… I didn’t realize it, but a part of me was judging them. Almost as if to say “Well, if they just worked harder” or “I bet they ate all the Swiss Cake Rolls.” And when I sat there in the hospital for two straight days recovering, I realized that DKA doesn’t respect anyone. It’s not something I’m impervious to or unable to fall prey to. It wasn’t DKA that hit me that day in the hospital, it was a healthy dose of humility and understanding.

I’ve helped Beyond Type 1 hand out literature and education presentations on DKA over the past few years. But that day in the hospital, I had more of an appreciation of the people it hits and less fear of the symptoms of DKA. Yes, it’s deadly. Yes, it’s a monster. Yes, it’s misunderstood. But the people it affects, can be you or me. Good control or bad control, it doesn’t have more respect for me simply because I volunteer and make Instagram videos about diabetes—DKA doesn’t give a rip. And I needed to start caring more for anyone and everyone who is sitting in a hospital with an IV in them, feeling their arms throbbing, the bad taste in their mouth and wishing they weren’t there.

The next time you see a picture on social media of someone who’s in that place that many of us have been in, I challenge you to learn from my mistakes and have compassion, help encourage them, do whatever it takes to stand with them. Because they have a name and DKA is just three ridiculous letters that shouldn’t have any power over us.

This piece is part of Beyond Type 1’s resources on DKA + managing ketones—find the complete collection of resources here.

WRITTEN BY Neil Greathouse, POSTED 06/19/19, UPDATED 11/10/22

Neil was diagnosed with type 1 diabetes in 1992 during flight training in the United States Air Force. Talk about “buckle up we may encounter some mild turbulence!” After working as a creative director at his company Studio8e8 and at New Life Church, he began creating daily video content on social media called #hackthebetes. His talent was revealed in electric/mind boggling 15 second segments, which led to collaborating with Beyond Type 1 and NLCCreative on the short film “Type1Day1.” Every day he works hard to not frighten people with his overwhelming strength & bicep prowess.