Further proof that God has an excellent sense of humor

My mouth watering, I entered the 35 carbs for the taco salad into the Bolus Wizard, clipped the pump back on my belt, and picked up my fork.

The pump vibrated on my hip. Then vibrated again. And then kept on vibrating.

Uh-oh.

I reached for the pump. Motor Error.

And then… and then…

And then I laughed out loud. I showed the pump to Debbie and she collapsed in a fit of giggles. Rio, not the type to be left out (but not sure what was so funny about a Motor Error) starting laughing, too.

What was so funny was the fact that, just hours before, two Medtronic engineers had gotten back on a plane for California following a 2-day visit to my home, recreation, and work locations. Their mission: to find a smoking gun. Or at least rule out a few theories.

I had joked with them that fucking Pump the Fifth would probably fail as soon as they got back on the damn plane, but I didn’t really believe it would happen. But, basically, that’s exactly what did happen. This latest Motor Error didn’t even upset me. It was just too fucking ironic to do anything other than laugh.

I let my Taco salad cool and went into my library to do the trace upload, only seconds from the event. In fact, the pump was still in its alarm state and wouldn’t upload. I cancelled the alarm, then I did the all-to-familiar ritual:

I removed the reservoir from the pump—calling it a fucking piece of shit, just for fun this time, and to keep the tradition alive—and rewound the pump. Then I re-inserted the reservoir. Locked it into place. Pressed ACT. Confirmed I was disconnected by arrowing down to “Yes” and pressing ACT again. Then I held the ACT button down to move the plunger forward, the pump chirping the whole time. Once I saw a drop of crystal clear Novolog at the tip of the tube’s quick disconnect, I told the pump, that yes, I see drops by arrowing down to “Yes” and pressing ACT. I then had to press ESC to bypass filling the cannula, and then twice more to get the home screen, and then I uploaded the pump, emailed a few people at Medtronic, just to ruin their evenings, and went back to my taco salad.

But, you know what, dearest reader? I owe you an apology. This story is out of order. We really need to go back in time. Back to when I was recently asked to donate my body to science… before I died. Oh, yes. And I also need to tell you the story of the suicide vest.

It all started with a phone call…

BaaaRingg!...ning…ning…

BaaaRingg!...ning…ning… said my antique brass-belled phone.

Medtronic was calling. They wanted to send a couple of the engineers who were working on my mystery Motor Errors out to New Mexico to meet me in person, run some tests, and generally get the lay of the land at the scene of the crime. Would I mind?

Not at all.

Oh and one more thing. Would I mind wearing Revel again, just while they are there?

Uhhhh…..

I hesitated a long time. I wasn’t really too keen on putting the little fucker back on. But, well, in the interest of science… and what’s the worst that could happen? I mean, other than ketones, DKA, and death? I decided I’d be hyper alert, just wear it as long as they were here, then go back to the CoZmo. I consented.

About a week later the Ghostbusters themselves were sitting at my kitchen table. Well two of them anyway. I think there were actually four Ghostbusters in the original movie. Medtronic only sent Dan Aykroyd and Harold Ramis:

But they came complete with Ghostbuster-like air sniffers to search for phantom magnetic fields.

With no luck.

Still, with Dan and Harold looking on, I booted up Pump the Fifth again. I brought the program back to life. Filled a reservoir with Novolog. Attached an infusion set. Did the whole rewind thing and then I stopped. I was probably only for a few seconds. But it seemed like hours to me.

In the dark recesses of my mind I was thinking: So this is what it feels like to strap on a suicide vest.

Well. OK. I exaggerate. But it felt strange to attach a piece of gear to my body that’s tried to kill me so many times. But this was in the interest of science. I pressed the blue inserter device against my stomach and pulled the trigger.

Thump!

Then nothing happened. Of course. Anyway “Dan” and “Harold” spent the afternoon at my house asking questions about the failures, how I use the pump, and what the price of tea in China was. It wasn’t good-cop/bad-cop. It was good-cop/good-cop and our conversation ranged over the full range of insulin pump topics with them frequently telling me that they couldn’t answer the various questions I was putting to them (mainly about new developments and next gen pumps, which I knew they couldn’t answer, but I had to try anyway).

Then we grabbed dinner in town. The next day they came to the clinic and did the Ghostbuster thing there, too. Despite what some of the nurses say about the clinic maybe being built on an old Indian burial ground, no evidence was found for the kind of ghosts that would haunt five insulin pumps.

My visitors didn’t learn much, but I learned that No Delivery alarms are mechanical in nature and Motor Errors are software driven. I was also intrigued to learn that while the pump’s black box will normally show precursor events leading up to a fatal crash, my Motor Errors literally appear out of the blue.

The Ghostbusters tell me they’ve never seen that before.

Ever.

Grrrrrrrrrrrreat.

So no smoking guns found, and at least two hopeful theories ruled out (the magnetic one and the un-mentioned one that I don’t know what the fuck I’m doing when I put a set on) they left again.

Oh, and to add irony to irony, I need to tell you about the conversation at the kitchen table moments before the final Motor Error.

The Revel was back on and behaving. It had a fresh reservoir of insulin. I was wearing a Med-T sensor. Do I take it back off, and if so, when? Or should I give it another chance?

Moments later, the pump made the choice for me.

After I finished my taco salad, I pulled the plug on it. The next morning the re-neutered Revel, now on Guardian duty, “lost” the Med-T sensor and stopped working. Screw this, I decided. I pulled out the sensor and put a Dexcom on my arm.

Now we’re going to see just how much we’ve come to depend on mySentry. I shut off the switch to the power strip that fed the Outpost. It winked out. Then I pulled the plug on the mySentry monitor.

A few minutes later, Sentry started emitting pitiful little chirps. It was the lost power alarm, a safety feature for sleeping parents to alert them to a nocturnal loss of alarm coverage.

It sounded like Sentry was begging me to turn him back on again.

I hesitated, then I pulled the power cord out of the back of the monitor—and it fell silent.

A spectacular failure

Sorry, but this is why I don’t expect to live to see an artificial pancreas. As most of you know, I’m probably the #1 fan of CGM and I think they’re just damn fine 95% of the time.

Uh… but then there’s the other 5% of the time.

Like last night.

Let me tell you about my Night of No Sleep and why if I hear that fucking xylophone noise one more time I’ll scream.

The trouble started at 2:20 AM. Well, actually, come to think of it, I had some minor trouble shortly before midnight. And some in the late afternoon before that. But, well, let’s just say the real trouble started at 2:20 AM with a down slope alarm. And it just went to hell from there.

Over the next 45 minutes I had six alarms and watched a breath-taking drop in my sensor glucose on the mySentry monitor.

There was just one problem. My blood sugar was rock-solid around 160 mg/dL the whole time. Can you see it in the photo above? Sentry has me at 57 with two arrows down. The Fingerstick meter has me at 164.

What. The. Fuck.

Now usually when something bad happens like this, and it doesn’t happen often, it’s at the end of a sensor’s life, when your body has devoured all the little enzymes and stuff that make the sensors work. But this puppy was on day two. I checked the ISIG, the raw signal coming of the sensor. I expected it to be very, very low. Maybe a six or so, to give me sensor readings this low.

Nope.

What. The. Fuck.

Sunspots? Cosmic rays? Static electricity?

Then, forty minutes into the debacle, with no calibration sticks or anything of the kind on my part, the tide went out again and:

The sensor glucose reversed itself and surged upwards. I checked the ISIG again:

Note the red plug in the now-neutered pump. That’s were insulin used to go. But Revel is not really endearing me as a stand-alone CGM. Especially at this very moment.

And then, one hour and two minutes after it started, Revel gave me this message:

Are you kidding me? First you wake me up to tell me I’m about to die of a low, and now you’re bitching at me that I’m above target?

What. The. Fuck.

Screw you, Sentry. I silenced the monitor, threw the Revel into the laundry hamper, rolled over, and…

…and couldn’t get back to sleep.

Well, at least buy life insurance, you dumb ass

That’s NOT what I said. But I had to bite my tongue to keep from saying it. If his three kids and his mother hadn’t been with him, I probably would have been more direct.

But I was pissed, pissed, pissed, PISSED.

Plus I was cold. And tired. And my feet hurt. I was at our clinic’s 30th Anniversary health fair. We’d converted the front parking lot into a festive carnival of health. Complete with jugglers. No shit. Actually, I shouldn’t say “we,” because all I did was show up on my day off to lend a hand by testing blood sugar, checking blood pressure, and chatting to people about all things diabetes.

I had my pound of fat with me. And the cracker. A pair of my favorite visual aids.

The pound of fat is a lumpy yellow squishy piece of plastic about the size of tub of margarine that simulates both the size and weight of a real pound of human fat. It always catches people’s eyes. “Eww…. What’s that?”

The cracker is also plastic, but looks good enough to eat. If I had used a real cracker, sure enough, before the day was over, someone would have eaten it.

Once people ask about the pound of fat and the cracker, you can tell them that eating one Zesta cracker more than your body needs everyday will buy you that one pound of fat at the end of a year. Yup. Ten calories more than your body burns adds a pound in a year. And one hundred calories more than you need adds ten pounds.

Gaining weight is easy-peasy.

But the same math works in reverse, too. Eat ten calories less a day than you need and lose a pound in a year. One hundred calories less than you need in a day, and you’ll lose ten pounds in a year.

I also had my body-systems-effected-by-high-blood-sugar model on the table, along with a pile of donated pedometers to give out. The model is a wonderful chrome tree with a stroked-out brain on the top and a necrotic foot on the bottom. In-between are an eye, the heart, a kidney, a neuron, an occluded artery, and a fatty pancreas.

I love visuals.

The message of course is that diabetes, per se, doesn’t effect this wide range of body systems; it’s high blood sugar that ruins the party, at which point most people are up for a fingerstick test to see what their blood sugar is.

A lot of new faces were cruising the 20 or so booths in the parking lot, but a number of my regulars came by, along with a few “missing in action” folks who showed up for the free food and weren’t expecting to bump into me. I would gently tease them, depending on the personality of the patient:

Oh my God, you’re alive! What? Well, it’s been so long since I’ve seen you I just assumed you had died!

Or…

How was your trip to Africa? What? You didn’t go to Africa for three months? Really? Then where have you been?

Or…

I’m beginning to think you don’t love me anymore, I can’t recall the last time you dropped in to visit me.

You get the idea.

Then I saw Victor (not his real name). Now Victor is a big, tough-looking dude. He’s tall for a Hispanic man, almost as tall as me. And he has huge muscular arms bigger than my head. He wears biker leather and a chrome chain connects his wallet to his belt. He’s covered in tattoos.

Which is odd, because when it comes to needles, Victor is a complete pussy.

Yep. Victor is the poster-boy for needle-phobic. A shame, as he has diabetes. And you know, anyone with diabetes will have to get friendly with needles in the fullness of time.

In fact, Victor is soooooo afraid of needles that he even freaks out at the idea of testing his blood sugar.

Now, in addition to being a pussy, Victor is also an idot. About once a year or so he manages to convince himself he doesn’t have diabetes anymore and stops taking his pills. And then he goes into glucose toxicity and then I have to save his sorry ass.

We’ve been through this three times before. Last year, rather than take his pills, he moved them from the pill box back into the bottle so his wife wouldn’t know he’d stopped again. He was only busted because after about two months it occurred to her she hadn’t needed to refill his scripts for quite a while.

I told him, Dude, if you’d just flushed ‘em down the john you might have gotten away with it. Well, up until you went blind and your kidneys failed, anyway.

But this last round, he pushed the envelope too much. My clinic meter greeted Victor with “Hi,” meaning his blood sugar was above 600 mg/dL. And I haven’t been able to jump-start his pancreas with pills this time. He would need insulin for a while. It would probably only take a month or six weeks of insulin-induced normal blood sugars for his beta cells to get back on the job.

But his phobia of needles was so extreme he announced he was prepared to die, rather than take shots. His wife, however, was not so keen on the idea of early widowhood with three small mouths to feed.

He finally consented to letting her give him a shot a day in his massive forearm (crazy to me, but less scary than a shot in the stomach to him) with a Levemir flex pen.

And that’s when the second problem cropped up. Victor drives a truck for a living. That means he needs a commercial driver’s license. And that means if he’s prescribed insulin he could lose his license. Lose your license, lose your job.

The work-around that was decided on was to provide Victor samples of basal insulin as a short-term treatment for acute hyperglycemia—which was actually true. His diabetes is controlled just fine on orals when he takes the damn things and behaves himself.

But it starting taking a lot more insulin than I thought it would to jump start his pancreas. His wife titrated him up to 50 units a day before she could even read his blood sugar. When we got to 75 units we were still in the high 200s. And I had a problem.

A flex pen only has 300 units in it. This guy was posed to plow through a pen every three days. We didn’t have enough sample pens to keep up; and he couldn’t afford to pay for them out of pocket, even at our bargain price of 20 clams a pen. The only solution was to switch to vials, which have 1,000 units each, and a sack of syringes.

I trained the wife on how to fill and inject with some donated syringes.

Victor freaked. “I won’t do it,” he said.

“Yes he will,” said his wife, her tone even and flat, with no room for argument.

Victor shook his head back and forth. She nodded hers up-and-down.

I emailed the doc on the case though our electronic medical record:

Pt states refusal to take injection via syringe. Spouse states she will ensure compliance. My money is on the mare.

That was a week before the health fair. When I saw Victor in the crowd I knew I had the unusual opportunity to get a mid-day blood sugar check. Like some sort of diabetes education vampire bat, I pounced on Victor and stuck his finger with a one-shot disposable lancing device.

His blood sugar was back up into the 380s instead of down well below 200 like I expected. Then it dawned on me. I’d just lost money on the horse race.

You’re not letting her give you the shots, are you? I asked.

“I told you I wouldn’t,” he replied stubbornly.

I sighed. Dumb ass, I thought to myself. Then I said to him, Well, then at least bring me the vials back. That’s two-hundred bucks worth of insulin we gave you. If you’re not going to use it to save your life, let me give it to someone who will.

Reverse psychology failed. He assured me he’d bring the vials back.

Dumb ass. Dumb ass. Dumb ass.

As he disappeared into the crowd, I felt like I had failed, and it depressed me. I don’t like to give up on anybody, and I hate losing to diabetes. With all the tools we have at hand, there’s no reason to ever lose anyone to diabetes; but all the tools in the world won’t do any good if people refuse to use them. Still, I view it as my job to figure out how to deploy those tools and how to convince people to use them. I had the tools for Victor, they were free, and they didn’t threaten his livelihood. But I just couldn’t convince him to use the tools.

The human element is the wild card variable in diabetes care. You can lead a horse to water…

I think we went the extra mile for Victor, and I don’t think we were asking too much. So at what point, if people won’t take some responsibility, do you give up?

At what point is it morally OK to abandon people to their fate?

End of the road

I am fucking exhausted. But if I counted right, this is 60 days. That means I kept my promise to you, my readers, to blog everyday about life with mySentry and Revel, for sixty days.

But this blogging every day thing is a HARD job. And in case you didn’t know it, I have a few too many jobs as it is. I’m half-time at the clinic, quarter time at the university, then I do the weekly Ask D’Mine column over at Diabetes Mine (as well as a couple “lightning rod” posts per month as a correspondent), a monthly column for dLife, and articles all over the place. Keep an eye on Diabetes Self-Management magazine over the next few issues, I’ve got some really exciting pieces coming up. Oh, and then I’ve got my most important job: father to ten-year-old Rio. So I’m retiring. What?! No. Not from father-hood. From blogging.

Sort of.

I don’t have the oomph to blog every day anymore. But I’d forgotten how fun it can be to write editor-free.

So going forward my new plan is Wednesdays with Wil. I’m going to post about something every Wednesday. For now, they’ll probably be mySentry updates. I’m still wearing the Revel à la Dexcom: as a standalone CGM. I think it’s a fair bet that the next gen Guardian CGM will talk the Sentry, so this will give me a preview of what that experience might be like. I’ve still got a box of sensors, so if Med-T lets me hang on to mySentry and the neutered Revel a while longer, I’d like to keep running with it for a time.

I’ve also got some other gear laying around that I want to talk about. And of course I always have an opinion, or a war story, or a Rio story worthy of sharing.

And given how long I sometimes write, you’re probably relived that you won’t have to read so much of me so often, too.

So, until Wednesday… be healthy.

Wil

A beautiful number

I slipped into the lab first thing in the morning, and flicked on the light. In the corner was the centrifuge. To the right the Piccolo: a machine that looks amazingly like the first Mac Plus computers, with their little one-quarter screens. It runs complete metabolic panels, lipids, and stuff like that. It weighs about two pounds and cost more than my Jeep. To the left is the complete blood count lab-in-a-box. It looks like a pregnant bread-making machine.

There are shelves of test tubes and all the supplies for blood draws. And rapid tests for strep, flu, HIV, and the stomach bug h. pylori.

Tucked back almost out of sight, next to the strip-reader for micro-albumin and urine analysis, and below the IRN and led testers, is the Bayer DCA 2000. An A1C machine.

When I started this Revel/Sentry adventure, I did a baseline test. I was planning a one-rat clinical study (the single low-down dirty rat being me) to see if all this integrated technology could improve my average blood sugar, which, frankly, has been less than stellar for a while. I’m too busy taking care of everyone else to do a good job of taking care of myself.

Yes. I realize that is a poor excuse, and I never accept it from my patients when they roll it out, either.

The baseline A1C was 7.3. Not horrible. Not great. Bad enough my medical chart carries a 250.03 diagnosis code: Diabetes, Type 1, un-controlled. It means my average day-and-night blood sugar for the previous three months was 163mg/dL. It was actually an improvement. My previous score, sometime back in September had been 7.6. Blah.

But like most type 1s, actually most persons with diabetes of any stripe, my A1C plot resembles the blue prints for a roller coaster. Up and down, and up again.

I pulled a box of A1C tests off of one of the shelves, tore open the foil packaging to remove a cartridge, then lanced my bruised, battered, and callused index finger with a one-shot lancing device—being careful to hold it slightly above the skin. The disposables pack a wicked punch. I got a nice sized drop of deep crimson blood. Next, I whisked half the drop up into a capillary tube and snapped the tube into the test kit. Licking my finger off, I swiped the test kit past the bar code reader, snapped it into the machine, pulled the start tab, and closed the lid. The DCA made some coffee-grinder noises and “Test in progress, Six minutes remaining” appeared on the blue-green LED readout.

Here’s where I always think it should play the Jeopardy music. You know, the jingle they play during final Jeopardy. The game show?

DaDo-da-da-do-doo-doo. Do-dupe. Dupe. Dupe.

I’ll take “blood sugar terror,” for $200, Alex.

The machine beeped.

7.0

Now remember, A1C tests carry the sins of the past. Blood cells, once exposed to high glucose levels never recover. They carry the scars of their encounters with glucose molecules with them to their graves in the spleen at the end of their mosquito short lives: three months after they were made in your bone marrow.

Right now, as you sit reading me (I assume you are sitting, not driving), the oldest red blood cell in your body, the half blind one with the walker, is about three months old. Any test of blood will include brand new cells and old cells. This is why we do the A1C every three months: that’s how long it takes to turn over all the old cells and replace them with new ones. But if your blood sugar improves rapidly, your A1C will be higher than you expect, because of the legacy cells in the mix. Still, either you see improvement or you won’t. If your blood sugar is getting better, doing an “early” A1C will still give you a better number, if not one that’s a 100% accurate depiction of the state of your current blood sugar.

A 7.0 means my average day-and-night blood sugar dropped to 154. It also means I can still be in the next Diabetics Gone Wild video. To be considered to be in-control, my A1C needs to be 6.9. At least as of today. This summer the guidelines are-a-changin.

Still, that’s a damn good drop for such a short time period. So when Revel wasn’t trying to kill me it was actually helping me be healthier.

Hmmmmmmmmmmm….

I wish for fuck’s sake the geniuses at Med-T could figure out what the Sam Hell is wrong with the pinche pumps. If I had a smoking gun—ah, so it was Mrs. Peacock in the Kitchen, with the gun—maybe I could move forward with Revel with some confidence that she won’t stab me in the back. Again.

And again, and again, and again, and again.

Back to the past

Wow. It’s fatter than I remembered it. My old CoZmo pump. I plugged in my ancient forty-three pound laptop computer, turned it on, and went to smoke a pipe while it spooled up. The CoZmo software won’t run on the house computer; it’s too new. No one upgrades software for dead insulin pumps, after all.

Eventually, laptop up and running, I opened the CoZmo application and pulled up my last saved program. There were a few things I wanted to change.

First, I’d made some basal tweaks over the last few weeks. Probably things I could have done from the Dex if I’d been paying attention, but the in-your-face nature of mySentry got me tuned into some problems that I had fixed. Reading off of Pump the Fifth’s “review basal” screen, I typed the new numbers into the appropriate boxes on the CoZmo’s software.

In the last week or so, I’d also tweaked my IC ratios: the math the pump uses to decide how much insulin to give you for a given carb load.

Then I had a couple of new things to add. Previously my CoZmo had been set to deliver my meal and correction boli over a five minute period. Somewhere, years ago, I had read that this slow-hand approach would improve insulin absorption. But… but… well, I noticed something almost right out of the box.. err.. boxes, with Revel. My post prandial spikes—the surges in blood sugar after eating—improved dramatically.

Why?

Was my old pump on the fritz and I didn’t know it before?

Did I change how I was eating?

No. I think it had to do with delivery speed. Med-T pumps, have only one speed. Fast-ish. Now I’m thinking getting the insulin on the job ASAP is really the way to go. Actually, there’s some excellent new research showing good-old-fashioned pre-bolusing is the best way to minimalize excursions. It makes sense, I guess. Onset of action for the logs is about 20 minutes. So if you start eating before the insulin is on the job, it’s only logical that you’ll go high.

That said. I can’t get my shit together enough to bolus 20 minutes before eating.

Still, if faster delivery will help, that much I can do. So I changed the CoZmo’s program.

Reviewing the options on the laptop I was happy to see some other features that I’d forgotten how much I missed. For instance: the site change reminder. Revel will show you, if you hunt and peck quite a bit, when you started a set. But that’s it. CoZmo will tell you when the next one is due. I find that quite a bit more useful. For some reason I have a hard time counting forwards. Do you count the day you started? Do you count the day you change? The whole thing gives me a headache, and the every-three-day nature of it on a seven day week just makes things worse. Please, my brain is over worked. Just tell me when to change the damn thing.

I was also happy to be reminded of the high blood sugar correction curve, a CoZmo feature that lets my corrections get increasingly more aggressive the higher my sugar is. Oh, and the ability to have pre-programed basal rates that automatically kick in by day of the week. I can have one basal rate for clinic days, one for writing days, and one for the University day. What? Days off? What are you talking about? What the fuck is a day off?

And of course, I really, really, really love the IOB (insulin on board) screen. A pump screen that shows you insulin still in play in your body, and how much time it has left. Med-T now has a “active insulin” volume on one of the screens, but it’s just a number with no context of time. It’s better than nothing, but I never quite got the hang of it. The CoZmo IOB has kept me from over-cooking my own bacon many a time.

Oh yeah. And the disconnect feature. When I jump in the shower in the morning (or when I’m cavorting with the Swedish Bikini Team), I can just tell the pump it’s off the job. It’ll keep track the basal I missed while disconnected, and deliver it to me when I hook back up. With Revel, I had been using the pre-set Easy Bolus button set at 0.6 of a unit of insulin, a typical average of the basal I miss off-pump in the morning—but having REAL tracking is better.

When I was done, I saved the program, slid a AAA battery back into Custer (my CoZmo pump’s pet name), and brought it back to life. I plugged an infrared transceiver into a USB port on the old laptop, and beamed the revised program to the CoZmo pump. And then, just like, she was ready for insulin.

Filling her up, I did realize that this is one area that Revel trumps. It’s a lot faster to change reservoirs. For one thing, the reservoir cap is built into the infusion set system with Revel. CoZmo uses a system where you have to thread the tubing through a cap and onto the reservoir. Then you lock the reservoir onto the piston, and the pump slowly sucks it down into the chamber. Then you have to lock the cap in place. It takes some time.

You also can’t pull the reservoir back out without triggering an alarm that requires you to go through a whole set-change menu. I remember several years ago Fox and I were having dinner with a diabetes virgin. (I guess I’d better clarify: the DV was a rep with a medical supply outfit. She was clueless about type 1s and pumps). Fox whipped out her pump and deftly removed the reservoir to show the DV where the insulin was. I sat mouth agape… you can do that? During my time with Revel, I did just the same myself several times when explaining insulin pumps to patients.

Still, it’s not the end of the world. I think what I’m going to miss the most about Revel will be the way the meter and pump talked to each other (as of last month, no more test strips for the CoZmo’s meter: the first circle in CoZmo’s death spiral). No more quick and easy correction on the fly. Now if I want to make a correction, I’ll need to manually enter the results from the meter into the pump. And I did like the thin profile of Revel, how she hugged my hip.

Oh, and I’ll miss having one less box on the belt.

And already, I’m suffering separation anxiety about losing mySentry.

So… I guess it’s good to be back. Kinda like putting on a well-worn pair of shoes. Maybe not sexy, but oh-so-comfortable.

But still, I know it’s only a matter of time before they stop making supplies for CoZmo and I’ll be forced to switch to some other pump.

Then what? Which lifeboat will I jump into when the RMS CoZmo disappears below the waves?

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?

No.

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.

Some insertions go better than others…

I was chillin’ with my Kindle, reading about bizarre cases of infectious disease, while I waited for the senor to get “wet.”

Now, for those of you who have yet to have the pleasure of playing with a CGM, the sensor is a wire-like device that slips under your skin. You use a guide needle to insert it, rather like an insulin pump infusion set or an IV. Stab yourself with the needle (hey, diabetes isn’t for wimps), pull the needle out, and the sensor stays behind.

The Med-T Sof-Sensor has a 23 gauge needle. Not that big in the greater scheme of things, but not exactly small either. Insulin needles are much, much smaller. Blood donation needles are much, much bigger. But the Med-T guide needle is thick enough that it can take some elbow grease to shove it in. Sometimes there’s pain involved. Sometimes there isn’t. I choose to put them in by hand because I think the Sen-setter insertion device is a piece of shit.

Once the sensor is in, you need to wait about 15 minutes to let it get “wet.” It needs to soak in your wet tissue for a little bit, taking a bath in interstitial fluid, before it will work.

How do you know when it’s wet enough?

Easy. Snap the seashell transmitter on. If you get a gently throbbing green light from deep inside the device (which was developed at Medtronic’s Area 51 facility), you know it’s good to go. No green light? Pull the transmitter back off and wait a while longer.

Some people only need a few minutes. Others need more than the recommended 15 minutes. The first generation sensors I’d just hook up as soon as they went in my body, and I never had any issues. Still, why cause trouble when you don’t need to? Now I wait. An occasional forced breather is a good thing for a workaholic, anyway.

Rio came bounding into the room. Full of energy at his age, he never walks. He runs. Skips. Bounds. Sometimes he’s does a “happy dance” that would do Snoopy proud. Yesterday he propelled himself from room to room by doing an Irish jig.

Where was I?

Oh yes. Rio came bounding into the room and said: “Gaaaaaaaaaaaaaaaaaah! You’re bleeding!”

So I am. But not that much… Still, I’m bleeding more than I’d like to. I mean, while it’s no gusher, there’s just enough blood there that the sensor will most likely fail to boot up on me.

Shit.

I studied the blood-soaked sensor with a critical eye. Hmmmmmmmmmmm…. I could give it a chance… But it’s 50/50 it will ever work right. Plus it’s getting late. I really prefer to change these in the morning, not at night, but these assorted failures have me off schedule.

Well. Crap. Now what? The last time I had a “bleeder” it gave me erratic readings all night long. In the morning, sleep disturbed by false alarms, I pulled it out, and the site bled like the Dutch Boy’s dyke without the thumb. Astounding after so many hours. That one must ’a lodged in a capillary.

Life is too short, and I want to get to bed as soon as possible.

I pulled the sensor and started over.

Why I’m staying in a bad marriage

What? Oh. No. Not that marriage. I wasn’t talking about my marriage to Debbie. While it’s no secret that Debbie and I have had our challenges, like any couple that has been together for a quarter of a century, our marriage couldn’t be classified as bad by any measure. I was talking about why I’m sticking with Revel though all her cheating and drama and lack of communication. Bitch that she is.

And like many bad marriages, the answer is that I’m sticking with her because of the kids: Little Outpost and her bigger sib Sentry. Yeah, I could live happily ever after without their mother right about now, but the fact is, the kids need their mother. Literally, in this case. The mySentry system can’t function without Revel. And my long-time mistress of times past, the standalone Guardian CGM, isn’t qualified to be their Step Mom. She doesn’t speak the same language as Revel’s kids. The Sentry system only works with the Revel pump.

But at this point, frankly, while I like the Revel pump a great deal (and quite a bit more than I expected I would, given my CoZmo bias), I would have thrown in the towel a while ago were it not for the Sentry. Taking the bad marriage analogy to the extreme, where people begin to argue that kids do better in split homes than in homes were their parents are miserable, the same perverse logic works in this case, too. I’m actually, selfishly, doing what’s best for me. Because staying with Revel means the kids stay with me. All the time.

And in this case, my “kids” do more than make me happy. They keep me healthy. Quite literally.

The mySentry system offers me what no other medical device on the market today can: maximum safety from my defective diabetes-riddled hypo-unaware body. People can argue and wail all they want about how mySentry wouldn’t be necessary if the Med-T CGM alarms were just loud enough, but the facts on the ground are what they are.

And the facts on the ground right now, today, are that—other than death—I have two options: Med-T and Dex. I don’t care what things should be. Or what they might be in the future. My health can’t wait for the next generation. I need to choose the best system for me today because I’m a sick man today.

If you’d asked me pre-Sentry what my choice was, the answer was simple: Dex. Even though the device was less sophisticated, less flexible, and I couldn’t take a frickin Tylenol for a headache; it had the one indisputable advantage over Med-T: it was louder. Actually, not really quite loud enough for my comfort, but it was quite literally the best I could get. Now the balance of power has shifted. The mySentry is louder than the Dex. It has never once failed to wake me when it alarms. So now, like before, the answer is simple (but different): Med-T. More sophisticated, more flexible, and I can take a frickin Tylenol for a headache again.

So that’s the bottom line for me. These pump problems have been highly vexing, to say the least, but they’ve not threatened my health; while the improved CGM volume, coupled with the predictive alarms, have improved my health and even more importantly, my health security.

I worry less about what might happen.

Debbie worries less.

Even Rio worries less. He’s learned how to read the mySentry monitor and it’s become a bit of a security blanket for him. (During a sensor startup last night he freaked out because there was no CGM trace or glucose value on the screen.)

So, yeah, Revel isn’t the “wife” I might want. But I’m staying in the bad marriage anyway.

Return of the Motor Errors

There’re days that it just doesn’t pay to get out of bed. Yesterday was just such a day. I had to be in Albuquerque, yet again. This time it was for a university faculty meeting to revise the curriculum we’re using to teach community health workers about diabetes.

Unlike earlier in the week, when I had to get up at 5am for an 8am Albuquerque meeting, this meeting was at 1:30 in the afternoon, giving me the morning free to sleep in an extra hour and get some writing done.

But it didn’t work out as planned. I woke up depressed for no particular reason; or maybe for every reason in the world combined. It’s not like any of us lack things to be depressed about in our world. So I sat at my computer and moped all morning. I pecked half-heartedly at the keys. I double-checked the shipping status of some pump supplies from Edge Park. Triple-checked my email. And quadruple-checked the weather. I flirted with, and suppressed, the urge to check eBay for antique anatomical models or miniature typewriters.

It wasn’t writer’s block so much as writer’s blah.

Four hours later, having accomplished absolutely fucking nothing for the day, it was time to hit the road. I pulled on a sport coat (red-brown corduroy over a pink dress shirt—some guys say real men don’t wear pink, but I say chicks dig it), gathered up my Go-Bag, the mySentry Monitor, a couple of pipes, a cup of iced coffee, and headed out.

It was a fiercely windy day, and following ten years of drought, half the state is blowing away. Our normally deep-blue high-altitude skies were muddy brown with dust. The traffic got heavier and heavier the closer and closer I got to the city. My bad mood deepened, exacerbated by my inability to find any music on my Sirius/XM radio that sounded right. Fifty frickin’ channels, and today they all suck.

At the curriculum meeting someone brought a big sack of corn chips and a dip of mixed beans, salsa, cheese, and guacamole. I carefully nibbled away, taking micro boluses and keeping one eye on the CGM screen on my pump. I was cruising at an amazingly flat 140-something and feeling quite the master of my diabetes. Until I noticed I was becoming… rather… um… prickly.

Never a good sign.

But was it the sucky day, or…???

I got out a meter.

And I tested.

And I swore.

And everyone looked at me.

Oops.

Oh. Did I say that out loud? I’m sorry.

273 md/dL. This is so why the artificial pancreas is not ready for primetime.

You know, even when you really understand the nature of CGM, and even when you do everything absolutely right, the little fuckers just sometimes have nervous breakdowns. I checked the Isig on the sensor status screen—the “raw” signal strength coming off the CGM sensor. It was low. A low Isig with a high blood sugar is always bad news indeed, as it tells me the sensor is dying. This is day six for this sensor, yes, well beyond the FDA approved window for use, but well within the common lifespan. I’ve been robbed.

I sent the fingerstick to the CGM to calibrate it, knowing full well that it was a suicide mission. The fingerstick’s and the CGM’s world views were too divergent. I sat back and waited for the “Cal Error” alarm, Med-Speak for calibration error. Sure enough, within 15 minutes, I had it and the CGM shut down.

I could have pulled the transmitter off and reset it, but I knew from experience it was pointless. For whatever reason, the sensor had died an early death. There was nothing in God’s green earth I could do to bring it back.

I was 132 miles from home and had no CGM. Crap.

And my blood sugar was high. Double crap.

It was back to fingersticks every 15 minutes. Triple crap.

Oh, and look at that, I only have three strips left. Quadruple crap. Can this day get any worse? Oh yes. Oh yes it can.

Of course the test strip issue was a non-issue. I was only a Boy Scout for one day (a story for another time) but I do believe in being prepared; I had a spare vial of strips in my Go-Bag. I also carry two spare infusion sets, two reservoirs, a flex pen of Novolog, Dex fluid, blood ketone meter and strips, band aids, batteries, breath mints, and pretty much everything else you need to survive the end of the world. I don’t, however, carry a spare CGM sensor. They’re always so damn reliable, it never seemed worth it.

Harrumph.

I kept my temper in check and survived the meeting. Outside, afterwards, it was hot and dusty, the wind still strong. It was now the height of rush hour. I stuffed and lit a pipe, gave up on the radio and slapped a rowdy CD into the player, cranked the volume, and sat in traffic, trying to be grateful that I don’t actually live in a city where I have to deal with this on a daily basis.

Finally, clearing the city, I was able to get home-bound at highway speeds. I did a steering wheel fingerstick and was still high. I took a correction.

And that’s when it happened.

Again.

I had to pull off the highway. That’s when I took the picture that I shared with you yesterday. Shit. Fuck. Damn. And Hell. I thought I’d seen the last of these bastards. After eight days “clean” on a Pump the Fifth and with new/different reservoirs and infusion sets, I had convinced myself there was some sort of weird production issue with that one batch of supplies, and that they had somehow caused trouble over four otherwise healthy pumps. I had convinced myself I had seen the last of Motor Errors.

Now… Well, QED, I’ve just had the displeasure of disproving that notion. The mystery deepens.

I sat for a time, the wind rocking and buffeting my jeep on the dusty median, and contemplated how good it would feel to disconnect the pump and throw it out the fucking window onto the interstate, and let the passing cars and trucks smash it to bits.

I fantasized about just going back to shots. Getting a hypo alert dog. And living happily ever after on a tropical island.

But then I remembered. I don’t like shots. I don’t like dogs. I don’t like the tropics. And maybe, truth be told, I’m really not that good at happy in the first place.

I disconnected the set. I didn’t throw the pump out the window. Instead, I practiced an all too familiar ritual:

I removed the reservoir from the pump—calling it a fucking piece of shit—and rewound the pump. Then I re-inserted the reservoir. Locked it into place. Pressed ACT. Confirmed I was disconnected by arrowing down to “Yes” and pressing ACT again. Then I held the ACT button down to move the plunger forward, the pump chirping the whole time. Once I saw a drop of crystal clear Novolog at the tip of the tube’s quick disconnect, I told the pump, that yes, I see drops by arrowing down to “Yes” and pressing ACT. I then had to press ESC to bypass filling the cannula, and then twice more to get the home screen, and then a third time to get to my CGM screen, which of course was useless as the sensor was dead.

Then I pulled back onto the highway for the long drive home.

I don’t believe in hexes. I am, however, re-evaluating jinxes.

And I’m beginning to think, that for me, this whole Revel/mySentry thing is jinxed.

Need I say more?

Blue’s Clues

Two come with each new pump, so I now have eight of them. The pair come in a little Ziploc baggie, the type you might put a pair of earrings in. The neatly folded piece of paper in the bag identifies the little blue clips inside as “Infusion Set Tubing Clamps.”

The same name is repeated, no shit, in 20 more languages.

But why would you want to clamp off your tubing? Wouldn’t that cause a No Delivery or a (((shudder))) Motor Error? I checked the manual and there was no mention of tubing clamps. I checked Med-T’s website. Again, no luck. I Googled and found about 20 people who posted questions at various pumper message boards, asking, “Hey, what the fuck are these little blue clips for, anyway?”

But no one had answered them.

So I emailed Ken, of Ken and Barbie fame, who was introduced to you at the beginning of our most recent adventure, about a month ago.

His reply was: “You know you are the FIRST person on the planet who as actually asked this curious question. The clamp is used as a troubleshooting step to test motor pressure and reservoir pressure should the need arise.”

Ah.

Lord protect us from the need arising.

Thoughts and theories

There’s not been much news coming out of Medtronic these past few days, but that doesn’t mean a waking hour passes that I don’t wonder about, and worry about, the frickin’ Motor Errors. What caused the plague of errors? Will they return again?

But Pump the Fifth has been running like a champ. No issues of any kind.

It’s working so normally that it’s almost scary.

Of course, if Med-T can’t figure this out, what chance do I have? Medtronic employs 38,000 people. Over the last week, I’ve talked to 37,998 of them. (The other two were on vacation.)

Still, the odds of so many pumps failing truly boggles the mind; and even if they had a bad “batch” of pumps, that doesn’t explain the re-built one also throwing out Motor Errors. So I keep coming around to one thought: what do they all have in common?

Well, me, of course. Or as Scott E. called me on his blog recently, Wil “Motor Error” Dubois. Thanks for the new nick-name, Scott. And while I’m not so arrogant as to rule myself out as the cause of all of this, it’s not my favorite theory. Not only do I think I know what I’m doing, but I’ve double checked myself. Triple checked myself. Quadruple checked myself. I’ve re-read the manuals, talked to Agent 99, and even checked in with my local trainer and my local rep. Everyone seems to agree that I’m using the gear right, doing the set changes right, and that this is the weirdest fucking thing they’ve ever heard of. Ever.

And to my face anyway, they all re-assure me that they don’t think I’m doing anything wrong. So if I’m in the clear (assuming I don’t have some sort of weird personal bio-electrical field that destroys pumps), then what’s left?

One thing.

Well, one thing that I can think of, anyway.

All of the Motor Errors, on all four pumps, happened on one lot of reservoirs and one lot of infusion sets. When I finally got another batch, over the last few days of Pump Four, and over the whole run (so far) of Pump the Fifth, I’ve had no trouble.

Not exactly QED-worthy—but one has to wonder. But that also begs the question, if this, all of this, ends up being about consumables rather than gear, why did it take so long for Med-T to send some more supplies instead of raining new (and used) pumps down on my head?

And the answer to that question is pretty simple: it wasn’t in the playbook. The playbook says multiple Motor Errors are the sign of a sick pump that needs to be replaced right away. Motor Errors are generally caused by stuff wrong with the pump, rather than stuff wrong with the consumables. I’m sure going forward, all new Motor Error replacement pumps will ship with a few new reservoirs and sets. Just for in case.

The problem is, bad reservoirs would, or should, as I understand it, trigger “no delivery” alarms rather than Motor Error alarms. At least most of the time. And while I’m up to my ears in Motor Errors, I’ve had precious few No Delivery errors. In fact, none since the first pump.

Still, given the evidence at this date, to my mind: I’m really beginning to think it was Mr. Green, in the Library, with the monkey wrench.

And I think the monkey wrench in the works is the reservoirs.

More tales of the Road Warrior

Five in the morning is a foul time of day. I do not, do not, do not like getting up before the sun can be bothered to.

But with literally hundreds of miles to go before I rest, that was what was required of me. Once again, and all too often lately, I was off to Albuquerque. This time for an early morning meeting of a group I’m part of that writes little single sheet mini-lessons for docs about various diabetes subjects; followed by a teaching gig at the University. I could, in theory, have done both of them remotely, but I figured, what the hell, if I’m going to be on the phone for half the day anyway, I might as well be there in person.

However, given my adventure the last time I headed south, I decided my new protocol would be to always take the Sentry with me on any drive that was more than an hour long.

The Jeep designers were thoughtful enough to design my ride with a nice little Sentry-sized recess in the top middle of the dashboard.

The first half of the day was un-eventful. Well, that’s not quite true. My turn signal freaked out, clicking with that ultra-vast clickiety-clickiety-clickiety-click noise that tells you you’ve lost a bulb. Between diabetes duties I swung into a Pep Boys to buy a replacement bulb. Then I had to buy a screw driver to change the bulb. Then it still didn’t work. Then I discovered that a mouse had chewed through the wring between the bulb and wherever in the car that power comes from….what? The engine?

So there was some stress involved.

And it wasn’t one of those wires you can splice yourself. It was one of those complicated coaxial cable kinda wires. Crap. This is gonna hurt my wallet. When I finished at the University I dashed north again for the Jeep dealership in Santa Fe.

$135.23 later, my tail light and turn signal were working again. Cheaper than the ticket I would have gotten ignoring it, I suppose.

Anyway, I was shooting correction boluses at the stress high all afternoon. And they caught up with me on the last leg home after leaving the Jeep Boys.

First, I got the “low predicted” alarm. I suspended my basal and popped a glucose tab in my mouth (Tropical Fruit Flavor!), then watched and waited. The next two updates on the Sentry monitor showed the drop continuing. So I popped another tab as I zipped down the highway.

Eventually, I could see the trace line flatten out. As it began to rise again, I turned the basal back on.

Could I do that with my pump perched on top of my steering wheel? Yeah. Probably. But I really like the larger screen. It’s easier to see the shape of the trace, and the fine details of slope and plateau which I use to guide my decision making process. More glucose? Wait another five minutes? Time to restart the insulin?

Plus, it lets me keep both hands on the wheel while driving my diabetes.

Who’s that man on my mySentry?

In the upper left hand corner of the monitor, to the left of the battery status icon, is a set of initials and a cartoon character.

As you can see, I need to change my battery.

But what’s up with the cartoon dude? Apparently, that’s myAvatar. mySentry comes pre-programed with about a dozen or so to choose from: some chicks, some dudes; of varying skin tones. I chose this guy ’cause he has long hair, a hint of a beard, and his skin and hair color match mine (if you subtract all the grey, which is really starting to dominate the scene over this last month). To be honest, none of them looked much like me or like my self-image.

Oh, and that’s my initials above my Avatar.

Why would you need your initials and an Avatar on your own monitor? Well, remember, it wasn’t really built to be your monitor. It’s built to be your mother’s. And what if your poor mother had not one, but two, kids with diabetes?

It happens.

The Avatars are a quick way for Mom to tell if it’s Jack’s pump signaling a nocturnal low, or Jill’s. That’s right, each mySentry will only report on one pump (but I’m thinking if your pockets were deep enough, you might be able to hook multiple Outposts and multiple Sentries into one single pump). But anyway, if you have more than one type 1 kiddo, you might have more than one Sentry monitor on your nightstand. You might also need a larger nightstand. And probably a Valium prescription. But that’s a discussion for another day.

The Avatars are a quick way to recognize who’s pump the monitor is reporting on. I don’t know what you’d do if you have twins, wouldn’t the Avatars be the same? Seriously, I guess this is as good a way as any to differentiate between a pair of pumpers.

I remember that the CoZmo pumps had a place where you could enter the name of the pump. My last one was named Custer. My first one had a Borg name. Anyway, the thinking at CoZmo was that if you named it you’d treat it better. Like a pet of sorts. Made sense to me. So perhaps letting the little ones choose their Avatars helps gets them engaged in some way with the new gear.

So the guy on mySentry isn’t the night watchman. He’s me.

Show me the money

Is mySentry overpriced? If you had bought it yesterday, it would have set you back $2,400. Now the price has gone up. Order today and it’ll set you back $3,000. Will your insurance help you out? Probably not. Not this year anyway. In the future? Maybe. These things take time. It’s déjà vu of the early days of CGM when the people at the insurance company would say continuous glucose what?

I wrote a review of mySentry over at Diabetes Mine a few weeks ago and all the feedback focused on price. It wasn’t a healthy discussion, either. It was more the type of rants you’d expect over something Congress had done or not done. The level of anger was palpable. You could taste it in the air.

The commenters raged against Med-T for charging so much. And they were angry about the existing system not being loud enough. And they were also angry the pump didn’t talk to their smart phones.

(((sigh)))

Where to even start? What planet do you people live on? Clearly one the FDA is yet to discover. To “fix” the volume issue would require Med-T to get a fresh approval. That’s starting over. It would take years. Have your pump talk to your phone? Are you kidding? Would you be happy with a four-year-old smart phone? That’s right. The FDA might approve a specific pump talking to a specific smart phone, but they aren’t ready to approve a blanket app for any phone.

So, you’d better get comfortable with proprietary devices, it’s going to be that way for a while. Hey, let’s not lose sight of the big news here: just moving the real time data to a remote device is ground breaking from an FDA approval standpoint. Dragging out my moldy airplane analogy: mySentry is the Wright Flyer and you all want Boeing Dream Liners. Yeah, we’ll get there, but it’s an evolutionary process. We have to go one step at a time.

But what about that three thousand bucks? Do I think that’s too much? Is it true what some people say, that it probably costs Med-T fifty bucks to make one?

You know, the second one might have cost fifty bucks to make. But the first one cost five million. I’m sure that if anyone volunteered to pay full price for serial number 1; then Med-T would be more than happy to sell serial number 2 at a honest price. No takers? Well then, I guess Med-T has no choice but to spread the development and regularity costs out over more than just the first few units.

Actually, and keep this to yourselves, because it’s a secret: CGM loses money. Dex is up to its ass in red ink, and while Med-T mixes all its numbers together, it’s highly doubtful they have yet to make a penny in cold-hard profits from CGM, much less have created a cash flow stream to pour into further research and development. This whole CGM thing is an investment in the future. Sure, Med-T hopes to make a pile of cash off of CGM… in the long run. So, in some ways, mySentry is a gift. It will only be bought by a small percentage of CGMers, off whom Med-T isn’t making any money in the first place.

Overpriced? Impossible to say. I think iPads are overpriced, but people stand in line to pay for the latest and greatest version. In fact, I wouldn’t be surprised if some of the people crying loudest about mySentry’s pricing were the same people standing in line at midnight at the Apple store.

First-in-class devices of any kind are always expensive. If you wait, they’ll get not only better, but cheaper, too. The original Guardian CGM cost me a fucking fourtune, both to buy and to operate in those years before insurance covered it. Now they are cheaper and better. But I’m not sore about that. This is no luxury item for me and my family. Like food and water; this is basic to my personal survival. That expensive early model kept me alive. And that’s not just being selfish, I’m the sole income earner for my family. And even more importantly, I have a boy to raise into a proper man (or as proper as humanly possible), before I can be excused from this life.

The greatest single threat to my existence is this damned inability to feel lows. Even the swift, deep ones. Am I mad that I’ll need to scrape up $3K to buy this thing if I decide to switch? That once again my family will do without a vacation for a couple more years, or little luxuries they might want? That I’ll have to keep drinking two-buck-Chuck rather than a more-pleasing-to-the-palette Malbec?

To be honest, nah. I’m too old, too cynical, and too jaded to waste that kind of energy. I’m looking at this martini as the glass half full, not half empty. mySentry is posed to be a quantum leap for me—for my health and my health security.

I’m not mad about the price.

I’m just delighted that it’s for sale.

Pay attention to me!

The next time you’re bored, and don’t have too many people around you, ignore a pump alarm. Just for fun.

Have you ever done that?

Have you even thought about doing that?

Do you know what will happen?

Your pump is like a nagging spouse or a lonely cat: the more you ignore it, the harder your pump will try to get your attention. Pumps set to vibrate will squawk if you ignore them long enough. Pumps set to squawk will try vibrating. Eventually, Scotland Yard will be unleashed on you, and your pump will try a different tone of voice—which to my ear sounds rather like European police car sirens. Wee-woo, Wee-woo, Wee-woo.

So that got me wondering how Sentry would act if I ignored him.

As it so happens, a badly bloused ½ cup of Bite-sized Shredded Wheat (the store brand, not the name brand) set off a high alarm on my way to work today, and I decided to ignore it.

Just to see what would happen.

The xylophone played its little tune like it always does. Then nothing happened for a minute. Then it played the tune again. Then nothing happened for a minute. Then it played the tune for a third time. This went on for quite a while. I lost count at six minutes, but I think after ten, the ignored spouse/lonely cat software kicked in.

Sentry still played the xylophone, but now the tempo shifted. It was more frantic. And the tone ran much longer. Wake-up wake-up wake-up wake-up wake-up wake-up wake-up wake-up wake-up wake-up wake-up.