LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Friday, May 11, 2012

Dead man walking

You shouldn’t have any blood ketones at all.

That said, if you do, any reading below 0.6 mmol/L is considered safe. In the green zone on the handy little chart that comes with Abbott’s blood ketone strips for the dual use Precision Xtra glucose/ketone meter.

Readings between 0.6 and 1.5 mmol/L are in the yellow zone and “indicate the development of a problem that may require medical assistance.”

Above 1.5 mmol/L is the red zone. A life threatening go-to-the-hospital-now emergency. Above 1.5 you’re already in Diabetic Ketoacidosis (DKA). Or if not actually in the city itself yet, you’re certainly in the suburbs.

And it’s stunning how fast you can blow though these stoplights.

But wait, a sec, you say, just what are these ketones anyway? What are we measuring? In a word: air pollution. If you run out of insulin, from… oh… I dunno… maybe an insulin pump that stops supplying you with insulin, your cells have a problem.

And their problem is, without insulin, no matter how much sugar you have in your blood, they can’t eat a bite of it. So they become cannibals. The lean and hungry ones turn on the fat and lazy ones. All across the jungle of your body, big iron pots are drug out of thatched huts and oily cooking fires are lit. The smoke from those oily fat-cooking cannibal fires chokes out the sun.

And that’s DKA in a nutshell.

The body, unable to dine on its normal feast of glucose turns cannibal and eats fat. As the fat is burned it lets off this nasty “smoke” called ketones. Ketones actually change the pH of your blood, making it acid. That starts a catastrophic chain reaction that will end in your death (faster than you’d think possible) if you don’t stop it.

Why am I talking about this today? Just check out this picture.

Yep, three of a kind. No delivery on the pump. High blood sugar on the meter. And ketones at 1.9, well the fuck into the red zone. A certified medical emergency playing out in real time.

So what the hell happened?

This morning I did a site change around 7 or so in the morning. In hindsight, that’s when the trouble started. Something went wrong with the cannula insertion. I grabbed a breakfast of about 20 carbs, this time egg, cheese, and ham in a small tortilla that Deb made. Usually I have a half cup of cereal, but the carbs would’ve been about the same. At my desk, writing, with myAssistant at my side—metaphorically—I saw the excursion begin.

But I didn’t think anything of it, as sometimes I get poor absorption the first few hours of a new set. And I often get a sharp spike from flour–based foods. By 8:30 I was above 200. By 9:00 I was above 225. At 9:40 I took the first correction bolus. And got the first of the “No Delivery” alarms.

Instead of pulling the set, I first checked to see if my tubing was kinked, and tried another bolus. I got a No Delivery again. I pulled the reservoir, did the whole rewind thing and all seemed good. By 10:00 I was kissing 300. By 10:50 the glucose was surging upwards on mySentry’s screen. I bolused again and got another round of No Delivery alarms that seemed to resolve themselves with a rewind.

How wrong I was.

In hindsight, that perfect 20/20 vision that after-the-fact plagues us, I know now that it had been four hours since my body had had any insulin. Deep beneath my skin, the cannibals were waking up. Do you hear the jungle drums? Each rewind was just relieving the pressure in the pump that was setting off the alarms, masking the real issue. My basal rate is so slight that it did not, in the time periods we are talking about, create enough pressure to trigger the No Delivery alarms. The attempted corrections piled on just enough to trigger the alarm. Re-setting the cartridge zeroed out the pressure and made it look like I was getting some insulin. In point of fact, I doubt a drop got through all morning.

Around 11:10 the cannibals broke through the underbrush and a wave of nausea like a tsunami rolled over me, and I made the first of many dashes for the bathroom.

And then, things spun out of control very quickly.

After praying to the porcelain gods for a bit, I knew this was not garden variety sick-to-my-stomach. I knew I was in trouble. As soon as I could stand I got to my Go-Bag and pulled out my blood ketone meter. I don’t know what I was expecting. A few ketones, maybe. I was stunned at the results. I knew I was in deep shit. I knew the pump, somehow wasn’t working right, but by now my mind was losing its ability to deal with this. To think it through. To come up with the best solution. I gave up on the pump and pulled the emergency Novolog flex pen from my bag and took a blind shot of 10 units. A lot for me. It was a desperate leap of faith into a dark chasm from a promontory surrounded by wolves.

Then more nausea. More vomiting. And fatigue I cannot explain. I laid on the couch and figured there was nothing more I could do. I had to wait for the manual shot of insulin to do its thing. Either I was going to die or I wasn’t, and I was too sick to care either way. I slept. Until I needed to throw up again. I woke just before 1 in the afternoon. The CGM screen on the pump said I was still above 250. I attempted another correction on the pump and got another No Delivery. This time it finally got through to me. I was fighting a real occlusion. My body wasn’t getting any insulin from the pump. I stumbled into the library and re-checked my ketones, now down to 1.7. Still in the red. Still in the get your ass to the hospital zone. My mind still in a fog, I pulled the infusion set. It had to be the guilty party. Insulin flowed through the rest of the system before it attached to me, at each of the rewinds.

It was bent a little:

There was both air bubbles and insulin in the cannula, but the bend? It might have come pulling it out, or it might have been bent in my body. We’ll never know.

I put in a fresh one in and connected the line. Then went to throw up again.

So did I go to the hospital like I should have?


Should I have? Probably. Yeah.

So what’s my major malfunction?

Well, they’ve got a really nasty staph infection problem in the ICU at the hospital, for one. And I’d be embarrassed to deal with those folks, given my profession, for two. And all I really wanted to do was lie on the couch and either die or sleep, for three.

I threw more insulin at the high sugar and the high ketones trough the new infusion set. I guess it got there eventually. By late afternoon the tide had turned and a drop finally started.

But you know what? Forget what I said a couple of days ago. I am fucking done with Revel pumps.

Now, to be fair, this adventure had nothing to do with the damn pump. It was a combination of a bad infusion set, and frankly: user error. I fucked up. I didn’t trouble shoot the No Delivery alarm in the proper way, I didn’t pay enough attention to my symptoms as they developed, and I paid dearly for both. I don’t really have the words to describe the kind of nausea and vomiting that comes the DKA. It’s different from, say… food poisoning vomiting, stomach flu vomiting, or drinking too much booze vomiting. It’s painful for one. It seems to wrack the body from stem to stern. The process takes over. And it goes on forever, through cycles and cycles of dry heaves after you have nothing more left to give.

And it doesn’t help that on one level you know your blood is turning to acid, and yet on another level you’re losing your cognitive function: as you drive down this road, you lose your ability to think clearly. A bit of animal panic sets in.

It leaves you feeling bruised, battered, sore, tired, and scared. My vocal cords burned from the up-bound stomach acids that scorched them. I could barely talk above a hoarse whisper.

Oh dear. Sorry. I hope you weren’t reading me over breakfast.

So, again, to be clear: this is one of those things that happen every-now-and-again to pumpers. But what happened to me is that I’ve had so damn many of these Motor Errors that I approached this garden variety emergency with the Motor Error playbook. Wrong playbook for this game. I assumed it was a ghost error, another false alarm. I missed the facts clearly in front of my face. My knife has gotten dull from all this trouble that wasn’t trouble. But I do blame the pump, in that, it got me complacent. It gave me so much trouble that I got into the habit of treating all trouble the same. Of not using my critical thinking skills. The damn thing cried wolf so many times I forgot to look out the window to see if there really were any canis lupi in the yard.

You know what? I’m getting my battered and scratched CoZmo out again. I’m going to zero the basal rates on the Revel. Neuter it as a pump. Wear it as a Guardian for the rest of this trail, while getting my insulin from a source I know and trust.

So this wasn’t the fault of the pump. But it was the straw that broke the camel’s back. I get it now. This, for me, is a jinxed project and am getting out before it kills me. I have no doubt at all that if I forge ahead, some other improbable disaster will befall me.

And what I am going to do about CGM? Go back to Dex? Use the Revel as a stand-alone device with the Sentry as an alarm amplifier? I have no idea right now. Honestly. I don’t. But I’m just too disgusted to go on with it.

I guess I’ll see how Sentry works as an add-on to a standalone CGM. My guess is that it will not be as nice as when it is part of an integrated system. But we’ll see what we see.

Only one thing is for sure, this is sure as hell isn’t the story I thought I’d be writing when this all started.


Blogger Scott E said...

Holy crap, Wil! I suppose the good news is that you lived to tell this story. And that you can sleep at night comfortably, for the first time in a long time, with the old out-of-warranty (assumed)-but-never-failed-you pump.

I've heard those Quicksets can be a bitch (I've never used them myself) when it comes to No Delivery alarms. I've used the Silhouette for years and they are rare with that set, so if I get the alarm I take it seriously. I'll stick with my Revel - it works well for me - but you need something that gives you mental comfort and sanity, and this clearly doesn't do it for you.

I should probably get a blood ketone meter. I've been using the pee-sticks forever....

7:47 AM  
Blogger DB said...

Wow - thanks for sharing - good to see others mindset and process ...

Love my cozmo... from my warm frustrated, angry hands....

I actually tried to revive my old Xtra Ketone meter - not for me - for a cat with BG over 500 - I had a few strips but didnt have the stupid calibration thing so I couldnt get it to work ... those damned ketone strips are $10 each ...

Cat was acting just like you - unhappy and barfing. 1 unit of humalog brought the cat back around - Im really lucky my experiment didnt kill the GFs cat

8:18 AM  
Anonymous Anonymous said...

The smoke from those oily fat-cooking cannibal fires chokes out the sun.

By far the greatest description of ketoacidosis I've ever read. I'm sorry to hear of your suffering, but I've been in that exact situation, and it was comforting to know someone else has walked that terrible scorched-earth mile.

10:30 AM  
Blogger Molly said...

I was a quickset lover for many years. But I eventually gave them up because I was SO SICK of the kinks (big and small) and the catastrophe it caused every time.

I use Cleos. Never thought I could manually insert, but I can. Love those little purple things!

I tried a Spring Universal infusion set for the first time yesterday. (they have a mechanism that triggers a blocking device creating an occlusion in case of any part of the infusion set base detaching from the body) The insertion went GREAT. Thought it was my new set.

For 20 minutes.

Then I rolled over on the couch and the "spring" feature happened, I didn't know what to do, so I pulled out a beautifully straight cannula.

sigh. Back to the Cleo.

(and, for the record, I'm still using my Cozmo. WAITING and WAITING for the t:slim to go to market, and hoping that my Cozmo makes it that long)

Glad you're better.


3:58 PM  

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