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!).

Monday, April 30, 2012

The American way of caring


The email from Northridge said a care package was on the way. Via overnight shipping, no less. And they gave me the tracking number.

A care package? For moi? No one has sent me a care package in years!

I wonder, what it could be? I mean obviously, it must have some much-needed reservoirs and infusion sets. But if you were just sending out medical stuff you’d say, “Hey, there’s a box of supplies on the way.” Right?

So this must be something special. A little something extra. Something else to show they care.

A cake?

No. One would hope a diabetes technology company wouldn’t show it cares by sending a cake.

Maybe they sent some d-friendly snacks.

Or maybe some pump skins. I’ve never tried those yet and can’t decide if they are cool or lame. The skins are vinyl sheets that wrap around the pump to change its appearance and personality. They now come in a dizzying array of colors and styles. The problem is, there really isn’t that much pump to decorate. The font of the pump is all keyboard and screen. The bottom has the viewing port for the reservoir, so you can visually see how much insulin is left in the pump. And the back is covered by the clip. So all you can really decorate is the top curve, half the bottom, and the very edges around the keyboard and screen.

Now, I can see where if you choose, say the leather skin, you could have a brown and black pump and that might actually look pretty cool. But the white tiger face design? How on earth would that work? I can’t see how the design would show. Now, the maple wood skin might be cool. That could give your pump a Victorian 21st Century look. I think they call it “Steampunk,” although I have no idea why. I’ll have to ask some young person.

But with so many to choose from, how on earth could you try to choose one for someone else?

So maybe they threw in a Medtronic stuffed animal for Rio. Although he already has both a small bear and a Lenny the Lion.

Oh, oh, oh. Maybe they’re sending one of those cool heavy 3-D metal Medtronic-logo paperweights all their training rooms have. Of course, to be fair, Medtronic has already sent me four paperweights.

Four $9,000 paperweights.

It might be something like a Med-T coffee cup. Or a water bottle. Or maybe someone has a sense of humor and had one of the dead and dismembered pumps bronzed like baby shoes. Actually, wouldn’t it be cool to have all a pump’s disparate parts suspended in a big clear block of clear plastic?

Well, whatever it is, it must be special!

I’m so excited I can hardly stand it!

With the tracking number in hand, I could watch the package make its journey across the country. From Granada Hills, California to North Hills Californian. From North Hills, California right over my head and far to the east to Memphis, Tennessee. From Memphis, Tennessee right over my head again, this time West bound, to Albuquerque. Then from Albuquerque up to Santa Fe. Then then, finally (and in less than 24 hours after starting its journey) from Santa Fe to my mother-in-law’s house in Las Vegas, New Mexico; where I was able to get to it a couple hours after it was dropped off.

I couldn’t wait to open the box. I slit the heavy brown packing tape with a box cutter, and pried the lid halfs open. Inside were five boxes of 6mm 43” Quicksets, quite sensibly from four different lots. Plus four boxes of 1.8 ml reservoirs, quite sensibly from two different lots. A box of ten Sof-Sensors. And…

And…

Nothing else.

No cake.

No d-friendly snacks.

No pump skins.

No logo stuff.

Not even a frickin’ can of Spam. What the hell kind of care package is this???

Well… Umm… come to think about it… a $3,000 care package. At least that’s what the retail price of all the “goodies” in the box add up to (well, $3,070.57 at Edge Park Medical Supply retail prices).

I guess in our country sending money is a way to show love. Rio, against all odds, surprised everyone—including himself—by winning Student of the Month for third grade this month. His Grandma Jean sent him money and he couldn’t feel more loved.

And I’m grateful for the supplies, don’t get me wrong. I really am. But I can’t help but be a little bummed.

I thought something special was coming.

Sunday, April 29, 2012

Practice makes perfect


Like a Marine recruit who has to strip down his gun and put it back together time and time and time and time again; I’m getting pretty damn good—and pretty damn fast—at programming Revel pumps.

Unlike my beloved near-extinct CoZmo, or even the Revel’s predecessor, the Revel pump has to be programed by hand. You cannot use your computer to help you, and the old Paradigm Pal software is gone and doesn’t work with the next generation. So no more programming Med-T pumps on a computer and uploading (downloading?) the settings to the pump.

Each and every tiny setting and option has entered via the pump’s keyboard one item and number at a time. Each step of the basal pattern. Every IC ratio. All the insulin sensitivity ratios. The glucose targets. The max bolus. The CGM alarm thresholds, rate alarms, predictive times. The alert type. The low reservoir warning. The CGM transmitter code. The code numbers to the linked meters. All the settings of the bolus wizard. The calibration reminder times, and all the rest of it.

But I’m fast, fast, fast, fast, fast after all this experience. I bet I can do it in under six hours now.

OK, that was a joke. It takes 15-20 minutes if you’ve done it four times in the last month. If you’re rusty, give yourself a half an hour.

And when all is said and done, you still have to “marry” the mySentry system to the pump. My poor Assistant. Four wives have left him in a little over a month. The guy’s gonna get a complex or something.

You would think that all this pump programming would earn me a Doctor of Pump Programming, or that Medtronic would at least make me, at a minimum, an Honorary Medtronic Pump Trainer.

(Remember: Not a nurse = Not a pump trainer. Ever, ever, ever.)

Pump five is now on-line, and the line is hooked to the diabetic (that would be me). The insulin is flowing. mySentry tells me the battery is strong, the calibration is current, and the sensor is good for three days. A green board.

“What the hell is wrong with the Sentry?” demands Debbie, coming into the room.

Huh?

I look at the screen. All icons green, just like they were a second ago. What are you talking about, babe? It’s working fine.

Debbie points her elegant index finger at the Sentry monitor accusingly, “Then how come there’s no trace line?”

Sure enough, my current blood sugar shows at the bottom of the screen, but the trace is blank. Oh. It’s a new pump. It was just born. It has no memory, I told her. The trace will start showing up pretty soon, but all the alarms are online. He’ll squawk if there’s trouble.

“Ah,” said Deb. “OK then. Well, here’s hoping the fifth time will be the charm.”




Saturday, April 28, 2012

A picture worth 4,000 words




Friday, April 27, 2012

Looking for clues


Some people at Medtronic think it was Colonel Mustard, in the Library, with the monkey wrench.

Some people at Medtronic think it was Miss Scarlet, in the Hall, with the knife.

Some people at Medtronic think it was Professor Plum, in the Billiard Room, with the lead pipe.

Other people at Medtronic think it was Mrs. Peacock, in the Dining Room, with the rope.

The only thing everyone agrees on for sure is that there was a murder. Hell, more than that. There’s practically a corpse in every room. An insulin pump serial killer is on the loose, and the race is on to find clues.

Beyond the ongoing Frankensteinian dismantling, testing, and rebuilding/recertifying of my returned pumps; I have it on good authority that there’re now no less than ten Revel pumps set up in different labs, each electronically tethered to mySentry units and multiple meters trying to replicate my configuration, to rule that in, or out, as a possible cause. I’ve even been told that hypobaric chamber is being used to duplicate my mile-above sea level air pressure. No stone is being left un-turned…

I suspect the executives, marketing, and customer service types are really reaching for the Maalox. The engineers, however, are having a field day. Nothing makes an engineer’s day better than a mystery to solve. And the more tricky, subtle, and obtuse the mystery, the better. Med-T’s brainiacs probably haven’t had this much fun since that infusion set failure-only-when bolusing while in a descending airplane fiasco a few years ago.

Meanwhile, practically every hour, or so it seems, I get a call or an email from someone at Med-T:

What kind of insulin is in the pump?
Novolog.

Hey, what’s the lot number on the reservoirs?
The lot number is H8108546.

What kind of infusion sets are you using?
Paradigm Quick-sets. 43 inch tube with the 6mm cannula.

Hey, what’s the lot number on the reservoirs?
The lot number is H8108546.

How did you resolve the motor errors?
I disconnect from my body, pull the reservoir from the pump, do a complete rewind, put the reservoir back in, advance the plunger until I get a drop of insulin, then skip over the fill cannula and hook back up. Oh, and there’s generally some swearing involved.

Hey, what’s the lot number on the reservoirs?
The lot number is H8108546.

Did the motor errors happen more often during correction or meal boli?
More often during corrections, small ones. But they’ve happened during meals too, and at least once during garden variety basal delivery.

Hey, what’s the lot number on the reservoirs?

(It could be said that the right hand doesn’t know what the left hand is doing, but clearly all hands are on deck.)


Thursday, April 26, 2012

Frankenstein’s Lab


Agent 99 called me again today to report on the autopsy performed on pump number one. After returning home to Medtronic, Pump One was stress-tested to within an inch of its life. Well, that’s wrong. It was stress tested beyond an inch of its life. Apparently, the testing totally destroys the pump.

The findings: diddly-squat. Every circuit, every gear, every motor, every sensor preformed up to and beyond specifications.

I feel a little guilty. Pump One was disemboweled for no reason. Poor thing. I guess some of her parts will live again, as she’s now an organ donor for rebuilt, recertified pumps for folks beyond their 30-day Rubicons.

Other findings: the pump was not exposed to a strong magnetic field, so I guess that clears the UPS man. Nor was it exposed to radiation. I guess I’m glad to hear that, too.

Would I like a copy of the report?

Yes, please.

Agent 99 tells me that once the tech boys (and girls) write up their findings, the report has to go to Legal to make sure any references to any proprietary technology are removed. I have visions of one of those CIA documents released under the Freedom of Information Act where everything but the page numbers of the bottom of the page are blacked out.

“It could take up to eight weeks,” said Agent 99, “just so you know.”

Faster than the NTSB, I told her.

But that begs the question: if there was nothing wrong with the pump; why did it give off so many error messages? That’s the million dollar question. Well, at least the nine thousand dollar per pump question. At five pumps I’m only up to $45,000, well short of a million.

I’ll take mystery errors for $250, Alex.


Wednesday, April 25, 2012

Will the fifth time be the charm?


The next thing Agent 99 wanted me to know, after filling me in on official and future replacement policies, was that she was soooooooo going to replace pump four with a brand-spanking-new one—for three reasons.

First, I should not have been sent a used pump in the first (fourth) place.

Second, because I was pissed off about the fact I was sent a used pump in the first (fourth) place.

And third, because pump 4 had racked up four motor errors, and therefore by conventional logic, was suspected of having some sort of mechanical problem (which, I gotta say, after four pumps even I’m skeptical about).

So………….


Revel the Fifth is on its way to me.

Meanwhile, could she please take a peek inside my underwear drawer?

Med-T pumps record and store a lot of data. If you choose to upload your pump to CareLink, you get all kinds of cool reports and info about your pump operations your blood sugar responses. They get a searchable gold mine of data about their product and diabetes in general. The problem is, they can’t actually find a single nugget in that pile of gold.

Not unless they have your username and password.

Then they can link you to your data.

I thought about how bad my recent blood sugars have been. Me. Mr. Diabetes Educator CGM expert guy.

My underwear is clean, but not folded, I warned Agent 99. And gave her my username and password.

I could hear her fingers rapidly clicking at her keyboard. “Hmmmmmm…..” she said. “It looks like most of the Motor Errors happen during small correction boluses.”

Yeah, I haven’t been keeping track, but that was my sense, too. I’ve had a few during meal boluses, too.

“Oh, yes, I see one of those now.”

Hey, I’m trying to remember, but I think one time I had one just out of the blue, you know with nothing but basal delivery going on. Do you see that one?

Clickly-clackity-click-clack. “Yeah, I got it. Huh. It’s not even at a rate change. Just right in the middle of nowhere.”

Even seen anything like this?

“Honestly? No. No, I haven’t.”

Next Agent 99 set up what’s called a Trace Upload—a longer, more sophisticated mating of the pump to the Med-T servers that pulls all kinds of hidden data from the belly of the little beast. It took us three tries to make it work.

But what Agent 99 really wanted to do was to recover the flight data recorder closer to the time of the crash. Come the next Motor Error (and she didn’t say IF there were another), I was to try to get to a computer within thirty minutes and call her. Unless it wasn’t between noon and 9pm Central Time, Tuesday through Saturday. Then I was to call the Helpline, ask for a member of the Green Ber… Uh… a member of the Solutions Team, and request a STAT trace upload.

Given Murphy’s Law, now that we’re ready, it’ll probably never happen again.

I confess to having mixed emotions about that. I’m sick to death of Motor Errors.

But now I’d kinda want to catch one in the act.



Tuesday, April 24, 2012

Opportunities


Where did we leave off? Oh, yes. I was chatting on the phone with the woman from the Solutions Team of the Helpline at San Antonio Medtronic. Hence forth, I’ll call her Agent 99.

Agent 99 wanted me to know she’d been assigned to me as my personal point-of-contact for any trouble I might be having whatsoever; so long as the trouble was happening between Noon and 9pm Central time, Tuesday through Saturday.

Apparently, Agent 99 is not a morning kinda girl.

But once it was clear that I was fine talking with her (and believe me, no one on the planet wants to get to the bottom of these pump problems more than I do—well, maybe Catherine M. Szyman might want to get the bottom of it a little more than I do), Agent 99 had a laundry list of things to discuss with me.

But first and foremost she wanted me to know that all new pumps do have 30-day warranties, and that someone at the Helpline was going to be re-trained and transferred to Medtronic’s offices in North Eastern Kyrgyzstan for sending me a used pump.

OK. I made up that last part. If Med-T was the United States Air Force, then the “guilty” party would be on a plane for North Eastern Kyrgyzstan faster than you could Google it to see if it’s a real county, or if I made that up, too. But Med-T is not that kind of outfit. That said, I’m told there’s going to be some retraining of Helpline folks so this doesn’t happen again.

In their defense, Agent 99 told me, sending four pumps out in a month is such an unprecedented event that perhaps her staff can be excused for not knowing the protocol. And the official protocol is this: if your original pump fails you for any reason within 30 days, it’s replaced with a new one. And if that pump fails within 30 days, it’s also replaced with a new one. In fact, if you had a pump failure every 29 days forever (God forbid), you’d get an infinite number of new pumps.

On the other hand, if your original pump fails beyond 30 days it’s replaced with a re-built, recertified one. Agent 99 tells me the FDA requires rebuilt pumps to be up to the same standards as brand new ones. And actually, a failure isn’t necessary required for pump replacement. I hope I don’t get her fired for repeating this, but Agent 99 told me Medtronic will actually even replace a pump if for no other reason than you are sick of the color, and wish you’d chosen a different color from the outset.

On paper, that’s damn good customer service.

Furthermore, as to the issue of rebuilt pumps, she also told me that if any customer is uncomfortable getting a rebuilt pump if theirs fails after 30 days, they can request a new one, and Med-T will comply and send out a new one instead.

That also sounds good on paper, well, over the phone. And I hope that’s what actually happens in the trenches.

But while that sounds all fine and good, what about the fact I was well within 30-days of my original pump start when pump number three came down with a bad case of motorerroritis? How did it happen that the folks at the Helpline thought I was outside of the 30 days in the first... ummmm… second… no, third place?

It turns out that the current system, which is being “reviewed,” is that the 30-day warranty starts on the day of insurance approval; which is fucking insane. Most pumpers probably don’t see their pump trainer for the first time for weeks after insurance approval. (My insurance never approved, but my trial system was entered into the Med-T computers as if I were a “real” customer, and when I call the Helpline, unless who ever answers is a reader of mine, they don’t know I’m anything other than any other customer. And if Helpline people do read me, they’ve never let on, or said anything at all to signify they know who I am.)

Agent 99 tells me that Med-T is looking to adopt my “suggestion” that the clock start on your official training day. In her carefully chosen words, I think she said they were “reviewing a change of policy on warranty start dates.”

Of course, I have no way of knowing whether or not they’ll follow through on that or not. I’m sure by now my customer file is flagged with big red letters, flashing lights, and sirens. So my advice to anyone who has a pump fail within thirty days of training: make a big stink about it and demand a new replacement. And if that new replacement fails within thirty days, make a second big stink about it.

So, I guess we can chalk this up as a victory for both me and the poor guy who has Blue Cross of Southern Bum-fuck Egypt. Although, perhaps a hollow victory, as the policy was well intended in the first place—but merely poorly executed by the Helpline in practice.


Next time: Wilthoven’s Symphony No. 5 in C minor



Monday, April 23, 2012

Medtronic calling



The antique phone on my desk rang the way only old-fashioned brass-belled phones can.

BaaaRingg!...ning…ning…


BaaaRingg!...ning…ning…


BaaaRingg!...ning…ning…

Deep and throaty, rising in pitch at the end of reach ring, followed by a musical echo that hangs in the air after each ring is gone. Phone calls are a real surprise around here. Well, ones on the honest-to-God phone, anyway. Most calls I get are on my dumb-phone. In fact, the only reason we still have a landline at all is for the internet that piggyback’s itself on all that fiber optic cable and copper.

Remember in the old movies where the long-distance operator, her voice lost in a sea of static says, “This is London calling, are we reaching?”

It was just like that.

Only without the static. My circa 1930 antique phone, rebuilt with a modern plug by a guy in Canada, has remarkable acoustics.

Oh. And it wasn’t London.

Oh. And it wasn’t a long-distance operator, either.

So I guess it really wasn’t anything like that at all.

It was Medtronic on the line. I never got around to calling Medtronic. So instead, they were calling me.

The woman calling was from the Medtronic Helpline’s new Green Berets… Or was it the Special Operations Command? Ummm… The Medtronic Customer Service SWAT team? No… that’s not quite right. Give me a second, I’ll remember it in a moment. Not the Rapid Response Unit. Not the Disaster Response Contingent, or the Oh-Shit Squad.

Oh! I remember now! They’re called the Solutions Team. And their job, as I understand it, is to monitor the pulse of diabetes social media and be proactive about offering assistance.

And they’ve been reading my blog.

Well, of course they fucking have, they loaned me the gear for review, they’re gonna want to know what I’m saying about it. That said, in times past, and during the current debacle, Med-T has been most circumspect about not reaching out to me. Not talking to me when I’m talking about them. I think they worry about the appearance of impropriety. Remember what I told you a month ago? About how just keeping your pants on isn’t enough? How you need to be sure it appears your pants are on, too? Med-T has been very hands off with me, and probably with everyone else who actively writes about them, too.

But the times they are a changing.’ According to the Long Distance Operator, based at the San Antonio Medtronic facility, Med-T has come to realize that some people are less likely to call than others, so Med-T is taking the lead and reaching out to people who are having issues with Med-T gear.

Some of you are going to go ballistic when you read that.

Some of you are gonna accuse Med-T of trying to stamp out the weeds of bad publicity wherever they sprout.

I’m a little more open minded about it. It’s not like Med-T shut down the Twitter feed or anything. The world is changing. It’s a networked, social media world. Just yesterday, the talking gas pump at the Giant Station was asking me to “friend” it on Facebook (fuck-off talking gas pump, I hate you… I give you my money… you keep my Jeep running… and that’s all the further our relationship is gonna go).

Anyway, the ways all of us interact with each other are changing. So I’m glad Med-T is listening to what their customers are saying, no matter who they are saying it to. I’m glad they’re not just sitting back and waiting for people to call the Helpline—whose toll free number is printed on the back of your pump where you can’t get to it if you can’t find a dime to unlock the damn belt clip on your pump.

I think it’s pretty awesome approach, and I think that they might be able to help a lot of people this way, too. For us overly-stubborn type 1s, we sometimes find it much easier to vent than to just ask for help. It’s something in the diabetes DNA, I suspect.

So I’m glad Med-T is being all modern and pro-active and trying to engage in two way conversations with us (even if Med-T had to use an antique telephone to reach me ‘cause I’m such a Twitter boob).

Oh, and I gotta say, the woman’s previous job was clearly either as a UN Peace Envoy or a NYPD Hostage Negotiator. She was almost overly polite, careful in her word choice, and quick to ask permission to continue the call.

And the first thing she wanted to talk to me about was… What? Oh my, look at the time! We’ll have to finish this tomorrow…



Next time: Thirty days hath September after all; fixing an epic customer-service screw up.

Sunday, April 22, 2012

Soul lessons for Sunday

Alternate title: The Gospel according to Rio

The Ancient Greeks saw the seat of the soul as the heart. We modern humans, despite periodic heartaches, tend to visualize ours “selves” as being in our heads.

While talking to 10-year-old Rio today about where in the vehicle Chitty Chitty Bang Bang’s soul was located (he couldn’t decide) I asked him where in his body he felt the essence of Rio was located.

He thought long and hard—furrowed his little brow—then rubbed his right hand over his heart and said, “Here.”

Then quickly qualified, “But I could be wrong.”

Rather than kiss him on top of his head, on his cheek, or on his mouth—as is my normal fashion—I leaned down and kissed him above his heart. Sensitive child that he is, I have no doubt he was right. The seat of your soul is wherever you feel it is, I told him.

He has a wonderful mind—inherited from me—but he has an even better heart. He’s truly a blend of the best that both his mother and I have to offer.




PS: You absolutely must read Ian Fleming’s Chitty Chitty Bang Bang, the story of the original transformer, out-loud to a child. If you do not have a child, you must go out and borrow one forthwith. Fleming’s tale of the magical car and the Pott family is a true masterpiece of the English Language. The flow, the cadence, the subtle humor, and amazing soul of the book make it by far the most wonderful thing I’ve ever read.

I wish I could write even half as well.

Saturday, April 21, 2012

Now what?

I’m sick of pump failures and pump alarms.

I’m sick of writing about pump failures and pumps alarms.

I’m sick of even thinking about pump failures and pump alarms.

You’re probably sick of reading about my pump failures and my pump alarms, too.

Let’s talk about something else… So... Some weather we’re having, huh?

Oh fuck. The only thing to talk about is what’s happening. So did I call the HelpLine after yesterday’s fiasco?

No. Frankly, what’s the point? They’ll replace it, I’m sure. Probably with another used one. I don’t think I’ve raised a big enough stink over their replacement policy to have changed it yet. And it would come by next day mail. And by now I’d be able to program it drunk at the bottom of a coal mine at midnight during an eclipse. But then it would start shedding motor errors within days.

Pre-cognition sucks. Particularly when you don’t like the future.

So now what? The stand-alone CGM monitor called Guardian doesn’t talk to the Sentry, and like Revel, Guardian suffers from a petite little voice. The best alarms in the world won’t help me if they are too low for me to hear them at night.

I’ve considered neutering Revel. Metaphorically ripping out its life-sustaining insulin system and just using it as a upgraded Guardian, and breaking out the CoZmo again to get insulin reliably into my body. But that’s back to multiple devices that don’t talk to each other. It’s a patch work. Not a system.

To be honest, I don’t know what I’m going to do. I’ve put a new infusion set on today, a couple of hours ago. So far so good, but every time this little fucker vibrates for some perfectly valid reason, I nearly jump of my skin.

I guess I’ll let it ride a bit. See if the plague of Motor Errors continues, worsens, or abates.

And then we’ll see what we see.

Friday, April 20, 2012

Truth is truth. That’s what my Mom says, anyway

I was worried. So I called my mother. Who told me my recent posts were one of the best suspense-thrillers she’s read in years.

Yeah, too bad it isn’t fiction, Mom. But I’m having some real ethical issues writing about this, I told her.

She asked me what the fuck I was talking about. (Mom might spend too much time reading my stuff, it’s affected her language.)

So I started babbling. How I don’t want to scare people. How I really believe that the mySentry system and Med-T’s CGM sensors are really awesome. How I know that, overall, their pumps are sound. How I can’t imagine what the hell is going on. How I was afraid that in reporting my experiences, I might bias people against a good system. And yet, if I white wash the troubles I’m having, how wouldn’t be true to my mission, either.

Now remember that my mother was a Walter Cronkite-era print journalist. “Truth is truth,” she told me. “Your readers are counting on you to tell the truth, even if you don’t like doing it. That’s what journalists do.”

Yeah, well, I’m really a blogger, so I’m not sure that’s the same.

My Mom snorted. “Given the state of journalism nowadays, I think you bloggers are the only real journalists left. Look, everyone is counting on your to tell the story the way it happens. You don’t have any choice. And I think you are doing a wonderful job of it, dear.”

Thanks, Mom. I guess sometimes, truth does hurt.

But, yeah. Truth is truth.

Thursday, April 19, 2012

High odds. Higher stakes

The Pope called me today. Apparently I’m in the running for Patron Saint of Insulin Pump Failures. But he has some concerns about the results of my back-ground check… something about exceeding the maximum number of allowable skeletons in the closet.

Anyway, I think you all know where this is going. I don’t blame you if you don’t believe it. I’m living it, and I don’t believe it either. But even though you can all guess the terrible ending of this day, let me tell you the story as it unfolded, because Revel the Fourth (lousy used piece of crap she is) saved my life today before she, like her sisters, gave up the ghost.

Our tale begins with the low. It was breathtakingly fast. A blitzkrieg hypo. No warning. Too fast even for my drop-rate alarm to wake up the situation. The rug was pulled out from under me in a split second. Hell. The whole damn floor was pulled out from under me in a split second.


The sensor was clocking a 120 when it predicted the low. My low threshold at this time of the day is set at 70. I use a 20-minute warning alarm in the predicted alarm settings, so for Revel to call a low while still above 100 means I’m dropping like a rock on Jupiter. At the time, I only realized it was fast; when I crunched the math after it was all over, it came in at a drop of more than two-and-a-half points per minute.

That’s a pretty fast drop, folks.

Oh. Did I mention I was on the road at the time? Yeah. Driving to Albuquerque for a meeting of the state’s Diabetes Advisory Council.

Of course, brain starved for glucose, I wove from lane to lane, getting out the meter, lance, and test strips—half of which spilled out of the vial and onto the floor. And in true diabetes road warrior style, I held the steering wheel with my knee, and with one eye on the road and one eye on my right index finger, tested my blood sugar.

I was already at 72 mg/dL. Forty eight points lower than the CGM was showing.

Then, still, not pulling off the road like a sensible person, I fished out a vial of glucose tablets (Tropical Fruit Flavor!) from the glove box, and started eating.

Chomp. Chomp. Chomp.

Drive for five minutes. Test blood sugar. No rise.

Chomp. Chomp. Chomp.

Drive for five minutes. Test blood sugar. No rise.

Chomp. Chomp. Chomp.

I got it back to up to 85mg/dL in about 32 miles. At first, I was mainly annoyed. I had woken up late and ran around the house like a crazy person, shouting at the cats and blaming my spouse for not waking me when she promised to. I was pretty high when I woke up, but still, that’s no excuse for bad behavior.

I took a correction, but obviously something went wrong over the next two hours. Astute readers will say, wait a minute, Wil, you’re always bragging about how great these predictive alarms are, but you just got bit in the butt. Your stupid CGM thought you were at 120 when you were already at 72. The anti-CGM crowd is already harrumphing me. Actually, I got no complaints at all. Other than about my traitorous body.

We need to judge CGM in proper context.

So let’s go back to the basics here. CGM’s don’t get to play in your blood. They park their expensive little asses in your interstitial fluid, the water between your cells. There be glucose in them thar fluids, but i-fluid is like my wife: late to all occasions. When blood glucose goes up, i-fluid follows. In a little while. When blood glucose goes down, i-fluid follows. In a little while. When your blood sugar is stable, the glucose in the blood and the i-fluid are very close.

So like the front and last car of a roller coaster train, blood glucose and i-fluid glucose will follow the same track: but the lead car and the end car are never at the exact same place at the exact same time. And that’s what makes predicitive alarms so great. They let the rider in the last car see where the rider in the first car is at.

I think the other day I said something stupid like “if you use your predictive alarms right, you’ll never go low.” Oops. So here I am low, predictive alarms and all. Lower than shit on the interstate. What do I have to say for myself?

I say thank God I wasn’t wearing my Dexcom today.

Because the Dex only has threshold alarms. That means I wouldn’t have gotten an alarm unitl I went below 70 on the CGM. Of course with the speed of the drop, we know the sugar was 48 points lower than the i-fluid. By the time Dex would have given me an alarm, my blood sugar would have already been at 22mg/dL. The paramedics would wonder what that funny noise coming from the wreckage was all about.

Instead, I arrived safe and sound in Albuquerque, feeling pretty damn good about Revel and Med-T CGM systems. Right up unitl sixteen minutes after 12 noon.

Motor Error, said Pump the Fourth.

I’m not sure how to describe the waves of emotions that crashed over the beaches of my soul at that moment.

Now, I’m not sure if I explained this or not, but a Motor Error isn’t one of those by-the-way alarms, like the red “maintenance required” light on your car’s dash board, that you can just ignore. When you get a Motor Error on a Revel, the pump has stopped. Your life support system is no longer on the job. And the only way to re-start the pump is to pull out the reservoir, rewind the pump, put the reservoir back in, and re-prime the system.

That means you have to unhook or risk a bonus bolus you don’t need.

And that means if you are sitting in the front of a very crowded room during a presentation about osteoporosis and diabetes, you have to get up and slip out of the room. With all eyes on you.

Down the hall, in the handicapped bathroom (the closest one), I disconnected my infusion set, 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.

Then I had to sneak back into the conference.

143 minutes later, at 1439 hours, during a presentation on a new curriculum for teaching healthy eating habits to fifth graders Pump the Forth said:

Motor Error.

Once again, all eyes on me (I’m so sitting in the fucking back row from now on) I got up in the middle of the speaker’s presentation and slipped out of the room.

Down the hall, in the handicapped bathroom (the closest one), I disconnected my infusion set, 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.

If you’re suffering déjà vu just reading this, imagine how I’m feeling at this point. I’ve done this something like fourteen times on four different insulin pumps in the last month.

And as they say on late night TV, but wait, there’s more!

Dateline: 1729 hours (that’s 5:29 pm):
Motor Error.

(((SILENT SCREAM)))

I’m now sitting on the patio of the Chama River Brewery drinking a nice Malbec with some of my university colleagues, thinking—up unitl the alarm—how lucky I was to be spending time with five charming, beautiful, and intelligent women. All of whom are safely and happily married, by the way. Just so you don’t get the wrong idea.

Sick of Motor Errors, and sick of excusing myself from places I want to be, I just unbuttoned my shirt in front of all five of them, disconnected my infusion set, 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.

And then I ordered a second glass of wine.

Wednesday, April 18, 2012

Why I (almost) never downloaded my Dexcom CGM

Boxes. Triangles. Circles. Xs. Stars. Crosses. Psychedelic colors. It doesn’t look biological. It doesn’t look medical. It looks archeological. Or forensic. A map of the scattered pieces of a downed airliner.

We all know CGM should more properly be called PCGM—for Pseudo Continuous Glucose Monitoring. There’s nothing continuous about it at all. It checks every five minutes. I guess someone at Dex decided it would be more honest to make graphs that plot only bona fide readings. But the result is a statistically proper scatter plot that’s fucking impossible to read.


Med-T software engineers went the fill-in-the gap route—connecting the dots to create smooth trace lines (albeit often with insanely steep slopes and valleys). To me, at least, these are much easier to read.


Hmmm…. Wait a minute. That’s not really an accurate statement. Because you don’t really “read” a CGM download. Not the way you read me, or a book, or a magazine, or your iPad.

You “read” it more like a radiologist “reads” an X-Ray. It’s visual, yes, but in many ways more visceral than cognitive. More interpretive than intellectual.

You need to “see” the ebb and flow of your body’s glucose rhythms—not so much as think about them. Perhaps it’s more akin to art than science. When I look at a Dex download I see Picasso. When I look at CareLink I see Monet. I have nothing against Mr. Picasso, I just find Mr. Monet easier on the eye, that’s all.

To me, the whole point of downloading a CGM is to give me the big picture of the little things that are happening in my body. I need a clean look. Yes I need other info too: what was my basal? When did I bolus? But I like the clean trace lines that let me focus my mind’s eye on the real story—what are the trends?

And I find trend spotting on Dex software so difficult I’ve given up trying. Med-T connects the dots. If some dots get lost in the real world, the seashell stores them. That doesn’t help you in Real-Time if you lose telemetry, but the historic data is there for you later.

Lost Dex data goes to the Bermuda Triangle. When I download the Dex of my youngest, bounciest peds patient, I have to get out a sharpie to connect all the gaps to try and get a clear picture of just what the hell is going on. (Just try doing that with a Picasso at the Louvre!)

I’ve also made some basal adjustments straight from Sentry, too. After the third morning of opening my eyes and starring at his six hour screen—my personal favorite—I recognized the three-AM dip. Tweaking the basal an hour up-stream flattened it out. I’ve never really been able to do that off a pump or Guardian or Dex monitor before, the screens are too small and too low res for that.

As for color—I get Dex’s intent. The thought, no doubt was to make it easier to follow one day. There are times that might be nice, but the combination of both a riot of color and a riot of shapes creates a visual jumble that nauseates me. CareLink looks clean by comparison. Overly clinical, perhaps, but in a comfy and Star-treky way.

When I look at my Dex downloads I see chaos.

When I look at my Med-T downloads I see problems.

Problems I can fix. Chaos? Not so much so.


No pump alarms today.

Tuesday, April 17, 2012

Regrets

OK. So today I’m calmer. Still pissed. But, you know. Getting over it. Not to say I’m going to let it go. I still think Med-T needs to stand behind each and every pump individually.

Anyway, today I was tidying up my computer’s desktop when I found this:


It’s the original cover design for my CGM book. It got dropped in favor of the blood cell/Kanji cover you’ve all seen—it was judged to better fit the underlying “Art of War” Oriental flavor of the text. I think there was also some trouble using the slightly wavy type font on the page footers on each page. Apparently there’s a law somewhere that says the cover font and the foot font have to match.

Still, looking at this today I found it quite striking. I kinda wish we’d gone with it instead. I like that retro-future look.

What do you all think? Vote via comments: Do you like this version, or the version that went to press better? And I’m gonna steal a move from Amy T’s playbook and offer an incentive to bride you to vote: If you leave a comment today, I’ll put your name in a hat, and let Rio draw one at random. The winner gets a limited edition Hard Cover version of Beyond Fingersticks.


No pump alarms today.

Monday, April 16, 2012

Typhon Wil. Or is it just a tempest in a teapot?

I was pissed off as soon as I saw the box. Well, mystified and pissed off. Mystified because the box was the wrong size. And pissed off, because it was clearly too small to have pump number four in it.

But low and behold it was pump number four. In a tiny box. With no original packaging. No manual. In fact, the box looked identical to the one I used to send the first two dead pumps back to Med-T in. That’s strange, I thought, not at all like the first three. For a heart-dropping moment I thought UPS had screwed up and returned to me one of the dead pumps that I sent back to Med-T. But when I tuned the pump over to check the serial number, I saw that was very much older than my other three. I looked at the invoice, it was labeled as a “loaner.”

Ah ha.

This is a used pump. Well. Well, well, well. Crap. And WTF?

I mean, not that it matters, I guess, the whole rig is “loaned” to me in the first place. There was no reason at all for them to loan me a new one. But Med-T choose to loan me brand-spanking new gear in the first place, and they have chosen to replace it with brand-spanking new (but malfunctioning) gear in the second and third places: Why sloppy seconds now?

I called the HelpLine for the hell of it, just to see what the thinking process is: I mean here Med-T sends me three defective pumps in a row. Or pumps that are too delicate to survive shipping from Louisville, Kentucky to New Mexico. And now I get a used one, instead?

And the HelpLine, who don’t know I’ve been loaned the system, apparently, explain to me that the policy is to replace a pump with a new pump if it fails within 30 days, and to replace them with used pumps thereafter.

And the woman went on to actually tell me that Med-D had already been more generous with me than was required. And to be honest, she said it in a rather shitty little way, with a tone that implied I should be grateful that I’d already been sent three malfunctioning brand-new pumps rather than complain about getting a used one.

No more new pumps. You’re outside your original 30 day warranty.

But shouldn’t each new pump get thirty-days? I asked.

No. Apparently each diabetic gets thirty days.

Is there anything else we can help you with today?

I would have thought that any company who had any faith in their gear would give EACH new unit its OWN 30 days. For God’s sake, they’ve sent three brand new pumps that their own tech support declares unfit for duty. If I had paid for this machine I’d be outraged. Hell, I didn’t pay for it, and I’m still outraged.

I didn’t even know what to say. No point at venting on someone who’s just doing her job. But my blood was already beginning to boil. I hate when I act this way, but I left her with a parting shot. No, there’s nothing else you can do today, and I know it’s not your fault, but I think your customer service sucks.

It wasn’t until I huge up the phone that I realized that Med-T must be using one fucked-up calendar. I counted the days since my official training and hook up, using a paper calendar. One… two… three… four…

It’s been 25 days since my initial hook up.

Even using their absurd 30-day since you start rule—rather than giving each new pump thirty days like September, April, June and November all rate—I should still be in new pump territory.

I suspect that they’re using some sort of ship date or something. But my trainer was overseas and couldn’t come train me and hook me up for a full two weeks after the gear got to her (it wasn’t sent to me). Now I know that most times Med-T ships directly to the customer. But you’re also supposed to swear on a stack of bibles that you won’t hook up until you’re trained. But trainers are busy. We’ve got another guy at our clinic that’s starting a Med-T pump, and it will be several weeks before the local trainer can make it up to our part of the woods.

Not pinning the 30-days to the date of pump start seems like heaping cheating on top of cheating to me. It’s chincy. Dis-ingenious. In a word: Wrong.

I’m liking mySentry so much I was very seriously considering switching. But after three failed pumps, forgive me for being a little gun shy. I figured maybe if number four worked I could arrange to buy it. You know, a proven survivor.

But damn if I going to buy someone else’s rebuilt problem and wear it for four years.

Sentry. Awesome. Revel not so much so. Med-Ts support of their products: one hundred thumbs down.

They also sent me a second Next Day Air box that had reservoirs and infusions sets. The wrong size of infusion sets. But I guess it’s the thought that counts.

Well, I gotta go now. I’m going to go enter my settings into to number four. The one from the fucking used car lot.

Then I’m going to email every single person I know at Med-T plus any other person who’s email I can find, right down to the night watchman, and give them a piece of my mind. This is not right. This is not the way we should be treated. Our very lives depend on this gear and if they can’t get new units to us that will work for thirty days without spitting out errors, apparently from manufacturing problems, then they shouldn’t be in the insulin pump business.

Actually, I guess I don’t need to email them at all. I got a funny feeling they’ll get the message loud and clear. And the message is: I want to see this policy changed. Not for me. If I squawk enough they’ll send me another new pump. But I want this policy changed for the next guy. For the guy who has Blue Cross of Southern Bum-fuck Egypt, with a 50% durable medical goods co-pay, and who just choked out four grand out of pocket to become a pumper.

I don’t know if I’ll be joining the Med-T family or not. But I damn sure want to know that for me, and for everyone, that this policy gets changed. It is unacceptable. Every new pump needs to prove itself in the field for thirty days. Every pump. If you can’t guarantee that, you’re guarantee isn’t worth squat.

And I’ll harp on this and cause a ruckus and stir up the peasants with their pitchforks and and whatever else it takes until this policy is changed.

My bottom-line message to Med-T: Stand behind your products or stand down from the diabetes gear industry.

Sunday, April 15, 2012

Thinking more about lighting and saints

I am freaking the fuck out. What next? Will I be canonized? I mean, come on, three pump failures in a row??? What are the odds? Med-T pumps just aren’t that bad. This is all too crazy to be true.

I’m beginning to feel paranoid.

Of course crazy things happen all the time. Wind set up an insane oscillation on the Tacoma Narrows Bridge that caused it to collapse back in the 40s. The de Havilland Comets crashed in the 50s because the shape of her windows made them more likely to fail—always a bad thing in a pressurized airliner at 36,000 feet. More recently, the drug Ambien has caused people to get up in their sleep and drive naked to 7-11 for a microwave burrito, return home safely, go back to bed, and wake the next morning (refreshed) with no memory of the incident.

So I’m just sayin’, crazy shit does happen. Why, Apple nearly floundered not that long ago; and is now the biggest company in the world. Richer than fucking Exxon Mobil.

But I’ve had 3 brand new Med-T pumps fail in a row. That. Just. Really. Doesn’t. Happen.

I mean, have you ever heard of it happening? Don’t you think you would have heard of it happening if it did?

So what’s going on? Sabotage? Did Animas, OmniPod, or Roche get wind of my impending review and bribe the UPS man to put a big magnet on top of my inbound packages? (Now that I think of it, that guy does look a little shifty…) I very much doubt it, but it would make a great short story if I decide to dip my pen into fiction again!

I don’t believe in hexes, Voodoo dolls, or black magick. I’m open minded about aliens and the Loch Ness Monster, but I don’t see how either of those could be effecting my insulin pumps (Bad Nessie! Bad girl!). I’m not an idiot who doesn’t know how to work a pump. I’ve been using this style of infusion sets for years on my CoZmo—yes, Med-T makes a Luer lock version for non-Medtronic pumps. Sunspots would affect everybody, not just me. And I don’t live in a toxic dump. Near a nuclear power plant. Or work in an MRI lab.

I can’t see how I’m any different from any other pump user, except for, you know… my good looks, charm and wit, and flare with a pen. But that shouldn’t cause pump problems.

I’m just the same as everybody…. Actually… you know…. I just had a horrible thought.

About what might be happening. About how I might just be different.

But…

But…

But… well… I’ve got a Sentry linked to the pump. And not one, but two meters. Sounds crazy—but I wonder if anyone tested that particular configuration?

Surely Med-T tested Sentry with one meter five ways to Sunday. Would they have thought to test the system with two?

Could it make any possible difference?

I wouldn’t think so. But stranger technical gremlins have happened. At least I think they have. Could one extra piece of gear cause a software glitch? Cause Motor Errors? Or cause the alarm for an Motor Error to go off even without a real motor problem present? A false alarm?

Nah. Probably not.

But three pumps! In a row! Really? Seems too crazy to be true. And I don’t think I’m crazy.

Of course, if this keeps up, I might get there soon.

Saturday, April 14, 2012

Just when you thought it was safe to go back into the water...

100 boxes of Revel pumps on the wall, 100 boxes of Revel pumps,
Take one down, ship it around… 99 boxes of Revel pumps on the wall.


99 boxes of Revel pumps on the wall, 99 boxes of Revel pumps,
Take one down, ship it around… 98 boxes of Revel pumps on the wall.


98 boxes of Revel pumps on the wall, 98 boxes of Revel pumps.
Take one down, ship it around… 97 boxes of Revel pumps on the wall.


97 boxes of Revel pumps on the wall, 97 boxes of Revel pumps,
Take one down, ship it around… 96 boxes of Revel pumps on the wall.


Or maybe…. How many insulin pumps does it take to change a light bulb?

So, the odds of getting hit by lightning once are around 1 in 576,000. The odds of getting hit by lightning twice? Around 1 in 9,000,000. Three times? Greater than the odds of getting canonized by the Catholic church, although it does happen. (Both canonizations and being hit by lightning three times.)

In point of fact, pity poor Roy Cleveland Sullivan, a U.S. Park Ranger who was hit by lightning no less than seven times in his life. He survived all seven strikes and shot himself at age 71 over an unrequited love. I’m not sure what to make of his demise. Anyway, he hasn’t been canonized yet, but probably should be.

Yes, boys and girls. New Pump Redux Redux just blew a gasket, slipped a cog, lost its mind, flipped it’s lid, snapped a fuse, had a meltdown, or whatever the fuck happens to insulin pumps to trash their delicate little motors—and I just got stuck by lightning three times. Today New Pump Redux² racked up two Motor Error alarms. One at 9:22 this morning, and one at 2:55 this afternoon. Both happened during small correction boli of less than one unit. Remember folks. These aren’t delivery errors. These aren’t occlusions. These are something going wrong with the motor that drives the plunger that pushes the insulin that keeps the diabetic alive. And they are both on an established infusion set and reservoir that has been preforming flawlessly.

After the second Motor Error alarm, to vent, I fired off nasty, terse emails to various folks at Med-T. The replies that came back to me all said the same thing: NO FUCKING WAY!!!

OK, so I might have paraphrased that a little bit.

They actually said things like: “How you have been so unlucky as to have multiple encounters with Motor Errors on multiple pumps is unknown to me.” And: “I’ve worked with hundreds, if not thousands of pumpers over the years, and I’ve never heard of anyone getting two bad pumps in a row, much less three.”

And they all told me (can you guess?): Motor Errors like these are the sign of a sick pump. Call the help line. Replace pump three. Lightning can’t possibly strike you four times.

So I did. And the HelpLine agreed that three isolated Motor Error alarms in such a short time period was bad Ju-Ju indeed, and that there was no question in their minds that pump three needed to be sent packing.

And so the fourth pump in four weeks is winging it’s way to me. Do I call it New Pump Redux Redux Redux? New Pump Redux³? Or New Pump Wars Episode IV? Or New Pump the Fourth? Or a Borg name, like 4-of-18 (hopefully not)?

So why haven’t I just thrown in the fucking towel and gone back to my CoZmo and my Dex? After all, I’ve worn three CoZmos and not one of them ever gave me a day of trouble. The first was a Model 1700 that was upgraded for free to a rebuilt Model 1800, when that newer model was released, and the third one was a brand new 1800 (and one of the very last sold when Smith’s closed their doors) that I got when my original warranty ran out.

Well, I’m sticking out this miserable party that Med-T is hosting partly because this is becoming so comical that I want to see just how many pumps it really does take to change a light bulb. Will the fourth time be the charm? Or the fortieth? And partly because, while all things mechanical can and do fail, the Med-T pumps don’t have that bad a reputation. But mostly, I sticking this out because the mySentry is a rockin’ piece of gear that I have become highly addicted to, and I can’t bear to send back—just yet. In the not-quite a month I’ve been playing with it, it has become my blood sugar GPS system. I use it to find where I am, and to help me get to where I want to go. It’s bordering on becoming an indispensable tool for me.

When I wake up in the middle of the night, even without my glasses on, it’s large enough that I can see my trace line and know if my blood sugar is stable or changing. And if it’s changing, how rapidly? The colors of the icons, even fuzzy glasses-less, alert me to trouble and help me plan my day as I wake up in the morning. Oh. Yes. That’s right. New infusion set today. Ah. I see. New sensor tomorrow.

And speaking of the sensors, holy crap, have they gotten better since I last used them! They’re running spot-fucking-on for me. And if they aren’t running spot-fucking-on for you, may I suggest that you read Chapter 9 of Beyond Fingersticks? Sof-sensors still do require some calibration discipline, but if you treat them right they’ll treat you right, too.

It really is a masterpiece. The CGM and the Sentry, that is.

And the Revel, when it’s not regurgitating Motor Errors all over my shoes, is really a sweet little pump. It’s thin and light. Easy to use, with nicely re-vamped and very user-friendly menus. I like the reduced load on my waist both in individual gear weight and in number of devices. I’ve even gotten fond of the bulky backlight-less meter that magically beams my blood sugar readings to the pump for fast and easy calibrations and corrections.

Yeah. You gotta know when to hold ‘em and know when to fold ‘em. But I’m not ready to fold ‘em just yet.

Of course, Chess is more my game than poker… but at this point I’m worried that I’m only one pump away from checkmate. And I’m not the one who’s winning the game.

Friday, April 13, 2012

The Build-a-Bear alarm

I happened to be in the bathroom when the unfamiliar sound reached my ears.

Mew-mew-mew.
Mew-mew-mew.
Mew-mew-mew.

What the fuck is that? I thought I’d learned all the sounds mySentry can make! This sounds like a… a cat? Well, an electronic version of a cat, anyway.

I hurried to the library, were myAssistant was on duty on my desk. Nothing was amiss. A clean trace line danced across the screen. While my blood sugar was nothing to brag about, it wasn’t that bad.

Battery green, insulin yellow, telemetry good, need to calibrate the sensor soon, sensor has a day to go. Nothing amiss. So…?

Mew-mew-mew.
Mew-mew-mew.
Mew-mew-mew.

Huh? Wait a sec. That sounded like it came from the living room. I opened one of the twin French doors to the library and stuck my head out. Nothing. Rio was sitting on the couch watching TV.

Hey, Ree, was there some sort of weird alarm on the TV show? I asked.

“No. Not that I recall. What do you mean by ‘weird’?”

Well… Well, actually it sounded a bit like a cat. Maybe a kitten. But electronic. Not a sound I’ve ever heard either of our cats make.

“Oh,” said Rio, “was this the noise?” And he held up Hippie Cheetah who said:


Mew-mew-mew.
Mew-mew-mew.
Mew-mew-mew.

“I’d forgotten Branny can talk,” said Rio beaming, “you just need to squeeze her paw… like this…”

Mew-mew-mew.
Mew-mew-mew.
Mew-mew-mew.

Ah. Not a mySentry alarm. A Build-a-Bear alarm.

Oh, and speaking of alarms, the pump has been a quiet as the grave today.

Thursday, April 12, 2012

Motor error mysteries revealed. Well, sort of….

OK. So I’ve been doing a lot of asking around. And I’ve been getting a lot of emails. And I appreciate the feedback advice some of you have been posting.

And here’re the FACTS, as best as I can discover them: No Delivery alarms are just garden variety occlusions that can be caused by a hundred and one things. They come from kinked tubing, bent cannulas, miss-set reservoirs, you name it. They’re alarms that are no cause for alarm, so to speak. Well, I mean they’re important, because they mean you aren’t getting any insulin and can die; but they’re generally easy to trouble-shoot, easy to fix, and don’t mean there’s anything wrong with the pump. They generally mean something’s wrong with the infusion set instead.

But it’s the Motor Error alarms that get folks shook up (especially people at various levels at Med-T), and more especially when they happen separate from No Delivery alarms. That’s because isolated Motor Errors are a symptom of a more serious problem.

Actually, sometimes, I’m told, when you get a couple of No Deliveries, you’ll then also get a Motor Error, and no one gets their fur ruffled about that. I guess that makes sense. But, but, but. Isolated, repeated Motor Error alarms, to quote one of my unnamed informants, “In my experience typically indicate a ‘sick’ pump.”

Pump number one suffered, as I recall—although I confess this is all beginning to run together in my head at this point—three isolated motor errors. The other ten errors were mixed events: Motor Errors and No Delivery alarms together. Pump two suffered four separate isolated motor errors. One per day on each day I had her.

It’s pretty clear looking back on it that Pump one was one sick puppy. And while Pump two wasn’t dead yet, hospice was on speed dial.

Now pump three has, at worst, a heart murmur. Nothing to get too upset about… yet. The two alarms on set up where No Delivery alarms that I got squared away by fooling around with the infusion set. I think I ended up advancing the reservoir plunger manually to get it moving, and then the pump took over from there. Or maybe I didn’t have the reservoir in just right. Or maybe something got stuck, being first time out of the gate and all.

It’s that isolated Motor Error the other afternoon that’s making me jumpy. Talk about twice burned, thrice shy. Yikers!

But no alarms today. (Whew!) How many alarm-free days will it take to relax? Hmmmmm….. it’s probably directly proportional to your wine consumption. Speaking of which…. where did Rio put my cork screw this time?

Wednesday, April 11, 2012

The theater of life

Tragedies are good theater. So are comedies. Unless it’s your life, then you just want to tell the playwright to sod off.


Dateline: 1718 hours (that’s 5:18 p.m.) yesterday:
Motor Error.


No, no, no. You didn’t accidently log on to a permalink to an older post. Pump Redux II, the third one to come stay with my family, is… well… is being a big butt-head like her sisters, that’s what.

I know what you’re thinking. You’re thinking maybe I got a bad batch of reservoirs. Maybe instead of whatever grease is used in them, someone on the assembly line used superglue instead. Good thinking. But wrong. First off, if the stupid things were just plumb stuck, I’d be writing about this on a netbook borrowed from an ICU nurse, rather than comfortably pounding away on my better-than-sex-as-I-remember-it Logitech Wave keyboard in my library. And of course that would require the two boxes of reservoirs I’ve had to have been from the same lot, too.

Actually… I wonder if the old box is still in the trash? Hold on…







Oh, that is so foul… I can’t believe how quickly trash turns into compost! Augh. But I found the box. I’ll spare you the details. The lot number is H8108546. But after that little episode of dumpster diving, I realize that this is the box from yesterday. When I opened the box, all the reservoirs fell out on the floor like a long ribbon of machine gun bullets or string cheese, so I threw the whole chain of perforated individually wrapped critters back in my diabetes supply cabinet and chucked the box in the trash (skinny boxes are hard to re-fill).


So we know the lot number of the reservoir that was in the chamber when the pump failed to fire yesterday, but we don’t know which lot was in New Pump and New Pump Redux. But… wait, wait, wait. I always carry two spare reservoirs and two spare infusion sets in my Go Bag (and good thing, too, lately). I can check their lot numbers. They’d be from the first box. I’m 90% sure of that.

Well… maybe 80% sure.

60%?

Hold on…





At any rate, there’re also H8108546. Which makes sense, I guess. The folks at Med-T would most likely just have grabbed two boxes off the shelf when they sent them to me. What’re the odds you’d get two boxes from two different lots?

Anyway, by now I’m feeling a little like a cat on a hot tin roof, waiting for the next error. I guess we’ll wait and see what tomorrow holds… In the meantime, I’m going to do some more research to try and get to the bottom of the No Delivery vs. the Motor Error alarms. What’s what. What might be my fault, what might be the fault of the infusion set, what might be the fault of the damn pump, and what might just be damn bad luck.

I’ll let you know what I learn tomorrow.

Tuesday, April 10, 2012

The third time is not the charm

New Pump Redux II made it through the night with no trouble. Checking in with myAssistant before even dragging my lazy ass out of bed, I could see I was red-lining my insulin. Low reservoir. Time for a site change. One thing I find that I miss about my CoZmo is that it had both a site change reminder alarm, and a site status screen that told me exactly when the next change is due. Site changes give me a headache because they happen every three days, but there’re seven days in the week, so they never happen on any sort of schedule that I can plug my brain into.

And there’s no point in just writing them on the calendar in advance, because sooner or later, a passing door knob will rip an infusion set right out of your body and ruin your best-laid plans.

That said, I’m finding that for me, and this won’t work for everyone, that myAssistant has once again created a great workaround for what I regard as a failure of engineering in the pump’s design. That sounds harsh, but if the damn pump alarms were loud enough in the first place, I wouldn’t have needed mySentry at all, now would I? Sorry. I’ll get some more coffee and stop ranting. After all, Sentry has proved to be much more than a workaround for the piss-poor alarm volume issue. It, for me, has become nothing short of the command and control center for my real-time diabetes decision making.

And I gotta say, one of the things that’s either good or bad about the Sentry system, is that you don’t really bother to look at your pump anymore. Why would you? Everything you need to know is on Sentry TV in living color, in more detail, and in a friendly large size—good for aging eyes.

Some people will think that tuning out the pump is a bad thing. But to be honest, for me at least, it’s a good thing. Look, some people check their email first thing in the morning. Others, the news, sports, or weather. All of us pump-packing people should be checking our pump status and blood sugar levels before our feet hit the floor, but I’d bet 35% of you check your email first; another 35% of you check the news, sports, or weather; and the last 30% of you hit the snooze alarm and fall right back asleep having checked nothing at all.

But Sentry makes checking the whole personal diabetes news, sports, and weather thing a snap. One glance takes in battery status; exact insulin level; your current more-or-less blood sugar; the direction you blood sugar is traveling, and how fast it’s on its way; when you need to calibrate your sensor; and the age of said sensor.

Could you find that info on the pump? Sure. If you go to no less than three separate screens. If you leave your pump set to not “time out” so the screen says on (and why wouldn’t you?), and if you leave it on, say, the six hour sensor screen, you can get your current sensor glucose; the trend over the last six hours; and those little up or down arrows that tell you if your diabetes weather is about to go to hell. Ut-oh. Hypo-storm coming. Better break out an umbrella. Also, in case you thought your pump’s screen was broken, those little squares on the bottom of the sensor trace screen mark insulin boli.

This same six-hour CGM screen (along with the 3, 12, and 24 hours views) also gives you a battery icon; and a more-or-less-how-much-insulin-you-have left in the pump icon. If you want to know exactly how much insulin you really have, you have to go to Home then hit Escape twice to get to Status. Next scroll waaaaaaaaaaaaaaaay down almost, but not quite, to the bottom to learn the actual number of units left in the reservoir. To learn when your next calibration is due the recipe is Home, Escape times three to Sensor Status, and it’ll show you the time your next calibration is due—not how many hours are left before you need to calibrate, like Sentry—and how old the sensor is. Again, the pump shows you, for instance, that the sensor is 1 day, 11 hours old; whereas Sentry shows how many days it’s still good to go.

This difference might drive some more technologically driven people batty (you know who you are), but frankly, I find the Sentry approach more user-friendly. Also, I really prefer one glance at one screen, without giving my fingers an early morning workout. If I actually took the time to take all those steps above every morning, I’d be chronically late to work.

Anyway, I got off track. Revel number 3, like both 1 and 2, is a Model 523: The little one. It holds a maximum of 180 units of insulin. I go through about 23 units of basal a day. For three days I need 69 units. In theory, I should need about the same amount for food, as half a type 1’s daily insulin requirements are basal and half are bolus. So over three days I’ll normally run though a little less than 140 units. The Model 523 gives me a good forty spare units of insulin just in case I’m invited to the Never Ending Pasta Bowl at Olive Garden, or an all-you-can-eat Chinese Buffett.

But that also means by the time my site is due, the reservoir is getting pretty low. This morning the little insulin icon on Sentry was red. It was warning me that heading out into the world with less insulin than I need to get back home alive is probably not the best of ideas. I’ve never actually paid attention to when Sentry decides to red-line me, it might be a percentage of the capacity, or it might be related to the low alert is set on my pump. It don’t think it’s the later, however, as I can’t recall getting a low reservoir alert from any of the three pumps, and I’ve been using the red light as my reminder that it’s site change day.

So you’re probably wondering how on earth I could need a new site on the first morning of a new pump. Did I go to three all-you-can-eat Chinese Buffets last night? No. Bummer.

During last night’s debut of my third Revel pump in three weeks (Ummmm…. These things are supposed to last longer than a week, right? I mean, I’ve read about the possibility of disposable pumps in the future, but I had assumed the price would come down…) I decided to just slap the cartridge from pump number two into number three. I’m trying to make my supplies last. This morning the red vial icon told me it was time to change.

Now pump three is miss-informed about the age of the CGM sensor because I lied to it last night to boot up the sensor. I sure as hell didn’t want to break in a new pump and a new sensor on the same night. The sensor is actually geriatric. Even though it’s green on the Sentry screen, it is actually five days old. I’ll pull it tomorrow. Hmmmmmm…. that makes me wonder. We all know the new six-day wear next-gen Med-T sensor, called Enlite, is in the pipe line. They have it over the Pond and in almost every other civilized and un-civilized place on the planet not ruled by the FDA. Will mySentry be able to recognize the change? Instead of three day count downs will it switch to six? One can only hope.

When I jumped out of the shower, I pre-inserted a sensor into my left leg for tomorrow, and covered it with a Tegaderm. Then I did an infusion set change. I filled a new reservoir from a Novolog vial using the clever little Apollo-Soyuz-style docking collar, snapped the Quick set onto the top, re-wound the pump, clicked the reservoir into place, confirmed that I was NOT hooked up, and held down the ACT button to fill the set’s tubing and…

No Delivery, said the pump.

My heart sunk to my shoes.

I pulled the reservoir out. Unhooked the infusion set. Hooked everything back up again. Then I re-wound the pump, clicked the reservoir into place, confirmed that I was NOT hooked up, and held the ACT button down again to fill the set’s tubing and…

No Delivery, said the pump.

Can your heart sink lower than your shoes?

So I’m liking Sentry. Loving it, even.

I just wish I could get a pump that would work right to go with it.

Monday, April 09, 2012

Déjà vu Redux


Having just done this last week, I was confident I could do it on my second glass of wine. I’m once again programing a brand-spanking new Med-T pump.

But being a moron, or maybe thinking lightning wouldn’t strike twice, I apparently threw out the pump program I had downloaded from Revel number one. So up to CareLink I went again, and printed out a pump settings report.

And as I sat at the kitchen table, suffering serious menu-driven déjà vu, I realized something I had missed last time. CareLink’s pump setting reports do not, do not, do not match the Revel’s menus. In other words, as you work your way down the various menus to bring your new pump to life, you have to hunt and peck through the three page settings report to find your numbers.

What frickin’ idiot designed the settings report?

Annoying is too kind a word. It would be the simplest thing in the world to have the settings report match the programming order. It would be like using a checklist. You could simply work your way down the report, entering info, turning features either off or on as you went. It would be easier. Faster. And less likely to result in errors.

But thanks to the Rex-Goliath Cabernet Sauvignon’s intelligence-enhancing effect on my mind, I got to looking at my basal rate and began to think that it was looking a little too much like a Coyote-and-Roadrunner landscape; and a little too little like the gently rolling sand dunes of a properly designed basal rate. I did some fine-tuning on the fly.

Then I entered my CGM thresholds, patterns, and alarms. I entered my insulin to carb ratios. My insulin sensitivity numbers. My targets and all the rest of it.

Next, I linked my CGM transmitter; my two meters (every time Med-T sends me a new pump I score another user’s manual, more clips and holsters, AAA batteries, but not a new meter—they come in a separate box); and then it was time to get myAssistant on the case of the new pump, something that didn’t go as smoothly as I might have liked last time, as you might recall.

I flopped on my bed, got out my Kindle, opened a good book, set the pump next to the mySentry monitor and wondered if I shouldn’t have had a third glass of wine. You know, for prophylactic stress reduction.

To the tune of a hoedown: Go to mySentry Main Menu, then to the Utilities Menu, then to Link to Pump. Now bow to your partner, bow to your corner, allemande left. Next, on New Pump Redux-Redux go to Main Menu, then to Utilities, then to Connect Devices, then to Other Devices, then turn it On, then go to Find Device.

No shit.

Then I was told it might take two minutes. Yeah. Suuuuuuuuuuuuuuure it will.

I settled in to read. But damn if it didn’t. Take two minutes, that is.

This time everything worked great. New Pump Redux-Redux shook hands with myAssistant, or they kissed each other on the cheeks, or whatever it is that these kinds of creatures do to greet each other—and in no time data was flowing from the newest pump to my remote viewing and alarming system.

Order was restored to my world.

Not the typical day at the office

An hour ago, I was swearing at a Roche AccuChek meter, which was deluded about what month it is, when the phone rang.

It was a woman’s voice. Sobbing. Choked with tears. I could barely make out what she was saying. She finally got her name out. I’ll call her Linda. She had been my patient for several years, but the family had just moved south. What’s wrong, Linda?

“My daughter was shot.”

Oh my God! When? Is she OK?

“She’s… she’s… Gone,” sobbed Linda, “It was a couple of days ago… She was at work… At Denny’s.” And the with a long wail she let out, “A man just shot her in the face after she served him.”

I didn’t know what to say. I held up one finger to the patient in my office, the owner of the AccuChek meter, universal language for “hold on one second.” I tried to ignore the person I was with, and focus on the woman with the greater need. She and her family had just left the northern part of our state for the southern part for better work opportunities.

I told her how sorry I was. How I couldn’t imagine how awful it must be. I asked her if she was still taking her insulin. She said she was trying. Taking it most of the time. Then I asked her if she wanted to talk to our counselor. She did. I made her promise not to hang up, then quickly put her on hold and dialed the counselor’s extension, brought her up to speed, then returned to Linda and then transferred the call. I’ve never been more grateful to be a member of a team.

The patient in my office overhead enough to know what was going on. “I heard about that on the news,” he told me. “What’s the world coming to?”

After we finally fixed the meter (turn it on, hold the “on” button down for 4-10 seconds to enter “set mode,” then you can change the date), and he left, I Googled the tragedy.

It’s true. Unfuckingbelievably true.

The slain waitress used to bring her mother to her appointments with me, but sadly, I can barely conjure up her face. But I remember the waitress’s youngest daughter very well.

The little girl played on my office floor with the stuffed animal-like Doctor’s Bag of plush medical “instruments” that I keep around so small children can help me “treat” their parents and grandparents. And she always wanted a Disney Princess sticker. She liked Jasmine the best, as her skin was the color of the child’s skin.

A child who now has no mother.

Even more morbid, I just remembered… I’ve eaten at that very Denny’s with Rio and Debbie.

The world is a very small and very connected place. And sometimes, a very sad place.

Sunday, April 08, 2012

Happy Easter

A number of years ago, about this time of year, Rio said to me: “So Santa lives at the North Pole; where does the Easter Bunny live?”

Without batting an eye I responded: Easter Island.

Saturday, April 07, 2012

S.O.S.

Dateline: 1335 hours (that’s 1:35 9.m.) today:
Motor Error.


Four days. Four alarms. This does not look good for the home team. I jumped from the plane and pulled the rip cord.

I took off the clip.

I dialed the number on the back of the pump.

I was told that if this was a medical emergency I should hang up and dial 9-1-1.

If I called 911 about this medical emergency, the operator would laugh her ass off.

I worked my way through the press this number, press that number robotic menus and shortly had an almost too cheerful young lady on my hands (metaphorically). I gave her a run-down of what was going on, how many errors I had gotten, and that I had promised the HelpLine girl last time that I’d call right way if trouble continued to access if I had the right kind of infusion sets.

I think I already told you that I didn’t think too much of the infusion set theory. It flew in the face of everything I thought I knew about infusion sets. Which is quite a lot. But with a second brand new pump giving me the same trouble the first brand new pump had, I was beginning to doubt myself.

Thankfully, my new Helper was scornful of the infusion set theory and expressed her opinion that Motor Error messages were rarely caused by infusion set issues; but rather generally by things further up-stream. Either the push-rod motor, an issue with the reservoir, or the connector between the reservoir and the tubing. She didn’t beat around the bush: hey, four errors in four days, we are so replacing this pump, too.

Actually, later in the day, I got an email from my local Med-T rep. I had fired off a question to him about the infusion set issue, as he actually knows what I look like, having seen me a time or two. His response was: “Your body type is perfectly appropriate for 6mm, 90 degree cannula. Very lean bodies need the Silhouettes simply because there is little-to-no subcutaneous tissue. Very lean could be described as perhaps a lean teen, or endurance athlete. Unfortunately, us middle-aged guys have a few pounds to spare…”

But back to my HelpLine mate. She still had some protocols to follow. Did I make out with a nurse in an MRI Scanner recently? No. Well, not in an MRI, anyway. Did I drop the pump? When? When I took it out of the next-day air box? And so on and so forth, including the mandatory, “by the way, what was your last blood sugar?” question that seems to be part of the HelpLine script. Of course, I had no frickin’ idea.

I did tell her that like last time, the box arrived intact, but that I always suspected the Brown Truck guys here in New Mexico of being brutes. I don’t know what it is. Maybe because they have such long distances to drive in our wide-open spaces, to get from delivery to delivery, but my 25 years in the state are littered with damaged mail order goods and customer service reps in India telling me how funny that is, as they never have any trouble getting their merchandise to other parts of the world intact.

My Helper told me that she personally suspects that much of the trouble she sees is from shipping brutes. Ummmm…. OK, I might have paraphrased her a little bit there.

Next we did the empty reservoir test. Did I tell you about that last time? You put an empty in, go through all the steps to fill, and when the push rod gets all the way forward and the “0.00 Units” message flashes, you let go, and then go check the Status screen to see if the pump knows there’s no insulin.

Of course, when the pump detected nary a drop nor a drip of insulin, it set off an alarm. Then it phoned myAssistant. Who said:

Bong-rong-tong!
Bong-rong-tong!
Bong-rong-tong!

My Helper laughed, “Was that a Sentry I just heard in the background?”

We went through the whole required routine that is now becoming routine for me. Fourteen days to return, yada yada, or thirty-six-hundred bucks, yada yada, you’ll have it tomorrow.

And she asked me what my plan was. Yeah, I’m just going to leave the damn thing on, and if it kicks the bucket once and for all in the middle of the night Sentry will wake me up and I’ll deal with it then.

I got no argument. So some of you might regard three pumps in three weeks as tragic. For me, it borders on comical. I gotta admire the customer service, actually. My Helper told me today not to worry, that they’d keep sending pumps indefinitely until they got me one that works. I’m sure that was meant to be re-assuring…

But…

 

Friday, April 06, 2012

Road Warriors

Alternate title: more non-FDA approved fun with mySentry

Life imitates art. Or is it art imitates life? And just where the fuck does technology come in to play in all of this?

Check out this picture that Rio snapped from the back seat of the Jeep today on our way to Santa Fe to see Titanic in 3-D (which, if you’ll pardon the pun, is absolutely smashing).


Now the Cerrito, that’s Spanish for a landform that’s too small to be a mountain, outside the windshield is called Starvation Peak.

Local lore has it that either Indians in pursuit of Spanish settlers chased them up to the top and starved them out; or maybe it was the Spanish who chased the Indians to the top and held them in siege until the last one of them starved rather than surrender. I hear both versions of the story in equal numbers. It’s like our own local Masada legend. I think any sort of siege warfare strikes me as a more European approach than a Native American approach, so if I had to vote, I’d vote for the Spanish starving the Indians; but of course, most likely nobody starved nobody up on Starvation Peak.

Still, it’s a great story.

Anyway, the only reason I’m talking about this, is I want you to first look at the shape of Starvation Peak. Then look at the shape of the trace line of my sensor glucose on the Sentry monitor on our dash board.


How crazy is that?!

Oh, and by the way, Sentry preforms just fine in an automobile. And probably would in trains, planes, and boats, too. So long as ya got power. I have one those mechanical coffee cups that doesn’t hold coffee. It has a cigarette lighter car-power plug (I’ll bet you younger people didn’t even know those crazy car power plugs were originally designed to charge electric cigarette lighters that were standard equipment in all cars in my day) on one end, and a standard house-style three-prong plug on the other end. Instant house power on the road.

No Outpost required. Sentry did a fine job of picking up the signals from pump number two on my waist.

What’s it like having your blood sugar in your face all the time when you’re driving? A hell of a lot safer than having it on your waist, that’s what.


Which got my mind thinking. We’re beaming data off our pumps like Chernobyl leaks radiation. Why should mySentry have all the fun? In theory, there’s no limit to the other devices in our lives that could be engineered to receive all or part of our pump data.

Why not build receivers into our cars? That could actually lower the number of accidents from dFolk who go lights out on the freeways and byways.

Hell, why not make a heads-up display on the windshield?

And more.

Signals could be received by watches, medical alert jewelry, phones, TVs, coffee cups.

The possibilities are limitless.

Why I bet some clever engineer could even build a tiny little screen into:






Dateline: 1920 hours (that’s 7:20 p.m.) today:
Motor Error.