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!).

Wednesday, February 20, 2013

Death of the Medicine Men

I don’t hate my job. Not really. But I hate what it’s become. Because back in the day, only a few years ago, I got to practice real medicine.

I’d better explain that.

I didn’t don a white coat and a stethoscope, diagnose diseases, and prescribe pills. Instead, I “practiced” medicine by understanding, educating, empowering, and motivating my patients. And I did that by spending the time it took get to know them as people, because that’s what you need to do to treat diabetes successfully. And I “practiced” medicine by taking the time to learn about my patient’s lives, too, because life gets in the way of diabetes. If your child just died, you don’t really care if you are checking your blood sugar or not. If the power company just turned off your electricity, you probably can’t afford your meds. If your boss sexually harasses you at work, you might not want to lose weight for fear of being even more desirable.

And I “practiced” medicine by getting to know my patients’ diabetes itself; because no two cases of diabetes, even type 2 diabetes, are created equal. Some type 2s have high blood sugar all the time, some type 2s have sugars that rise in the night, some type 2s have sugars that only shoot up after meals. Same disease. Different incarnations. And that means different solutions are required. A blind prescription pad is impotent. Diabetes treatment isn’t one-size-fits-all. Understanding the patients, their lives, their diabetes; and helping them cope with and conquer their diabetes made me a healer, I think.

It was glorious work. I was a detective, a social anthropologist, a counselor, a cheerleader, and a little league coach all rolled into one. I woke every morning excited about taking on a new day’s challenges. I slept well at night knowing I had spent my day actually helping people.

But now I don’t sleep so well at night. I dread the alarm clock, and I have to drag my ass out of bed every morning, because times have changed. I’m not “practicing” real medicine anymore; I’m not sure any of us are. Every few weeks our assorted masters at the federal, state, and local levels mandate new things we must do. We are told: You must create care plans on X% of your hypertensive patients or kiss your funding good bye. You must measure waist circumference or there’ll be hell to pay. You must print a visit summary before the patient leaves. You must… You must… You must… You must

The “you musts” are endless.

Now I spend nearly all my time with my nose in my computer, charting all the required minutiae in all the right places. It’s no longer sufficient that I check a patient’s blood pressure. I must also enter it in just the right place. And I must check the box that validates that I have just checked the blood pressure and I have entered it in just the right place. And then I must, before I can go somewhere else in the chart—perhaps to make a note that the patient just told me about her boss sexually harassing her—I must weigh her and I must enter that information in just the right place. Oh and then I must calculate her body mass index, and I must chart that I counseled her on the fact she’s too fat, and I must print patient educational materials telling her she’s too fat, then I must make her promise to discuss it again in the future, and I must choose a date to do just that and I must chart that, too. In just the right place. Then, and only then, am I “free” to leave that section of the chart.

And on and on and on it goes.

At first this overwhelming flood of exacting requirements and new must-dos caused some push-back from the medical staff, who just wanted to make patients healthier. Then one of the middle-management people posted this sign on the wall:

Relearn, Relocate, or Retire.

So literally, the writing was on the wall. Way to motivate the troops. Caesar would be proud, no doubt. Or Kadafi. Or Saddam. But the sign did its job. Dissent evaporated. We put our noses to the electronic grindstone, not even realizing that the soul of medicine had just been sacrificed on the Altar of Must.

After months of generalized misery and persistent blues, I awoke this morning to the realization that I’m not having a conversation with my patients anymore. I’m not learning who they are. I’m not understanding the victories and defeats in their daily lives. I’m not bonding with them in a way that they will share their darkest fears and experiences with me anymore. I am neither educating nor inspiring. I’m not motivating, and I’m certainly not healing. I’m just interviewing my patients and recording their answers like a court reporter, rarely even having time to look them in the eye.

Now, instead of a Medicine Man, I’m a fucking bureaucrat.

And that realization depresses me beyond my ability to communicate. Perhaps its time for me to find another line of work. But this isn’t just about me and my job satisfaction. There’s something larger at stake here.

As a society, we’ve been down this path before with No Child Left Behind, a perhaps well-intentioned piece of legislation that ended up creating an environment in which educators could no longer educate our children; and all innovation, inspiration, and creativity was squashed as our best, brightest, and most passionate teachers as they were forced to teach to the test. It fully industrialized schooling—ironic, given it happened in the post-industrial age.

It has destroyed all that was best about American education. If you don’t believe me, just ask any veteran teacher if she’s happier, more satisfied, or feels more effective now than she was before Every Child Was Left Behind.

Why did I bring this up? Because, like education, the healing arts can’t be industrialized. One size doesn’t fit all.

Because practicing medicine to the chart is just like teaching to the test. And it could be the death of us all.

Wednesday, February 13, 2013

Bubble trouble

Somewhere I thought I read that the t:slim was supposed to be a bubble-free system. But I don’t recall where, and I can’t find it now, so maybe I was dreaming.

All I can find about bubbles in the official literature is the warning in the manual to be careful not to have any bubbles in the fill syringe when doing a site change. Well, duh.

Of course, your t:slim insulin lives in a plastic bag hidden inside a solid, dark cave of plastic where no eye can spy a bubble, should it lurk there.

But because I was bubble-deluded, thinking I had read it was a bubble-free system, I hadn’t been paying much attention to the issue until I had an unusual fit of boredom.

Now boredom isn’t usually an issue for me, as I’m an overworked workaholic. But a week or so ago I was actually lying on the bed doing nothing. My restless hands were fidgeting with my pump, running the infusion set tubing through my fingers. And that’s when I saw it. A stretch of clear space in the heart of the tubing. Then another. And another.

What the fuck?

Are those… are those… are those bubbles?

Now I’m totally on board with not adding any unnecessary chemicals into our bodies, but sometimes I wish insulin had a color dye in it. I don’t know about you, but I have a hard time seeing the clear insulin in a clear tube. And it’s even worse after I’ve worn the tubing a few days. As it gets bent, tucked, scuffed, and so forth, it develops a differential sheen that can be mistaken for a bubble.

So that was my first thought. They must be faux bubbles. This set was on its third day. (My skin freaks out under an infusion set after two days, but my insurance company doesn’t want to pay for changing my sets every two days, so I’m dealing with all sorts of skin irritation and trying to survive the third day by scratching frequently while I wait out a “prior authorization” for the number of sets I actually use.)

But these really, really, really looked like bubbles. To make sure, I marked one of the mysterious clear spots with a sharpie, placing a blue mark on either side of the mystery artifact and then biding my time, literally.

And sure enough:

The bubble migrated. It moved up the tube. There is air in my insulin sack. And that air is being sucked up by the micro pump. And that air is being sent down the infusion set tubing, taking up space where insulin is supposed to be. Damn it.

Now, in case you don’t know, the air is harmless in and of itself. It won’t hurt me, but where there’s air, there isn’t insulin. It displaces the insulin. That lowers the insulin volume I should be getting. So here, in the third day of the life of a set, I’ve got 3 bubbles each nearly an inch long.

That means I’m not getting the amount of insulin that I’m supposed to be getting.

Lovely. Just fucking lovely.

Well, whether I was dreaming or not about the bubble free system—even though I was lying in bed when I discovered them—these bubbles are no dream.

Wednesday, February 06, 2013

All thumbs

I’m all thumbs when it comes to running this stupid pump, and it’s causing me no end of trouble lately. For some reason, the shape and size of the t:slim, and the shape and size of my hands, conspire together to create an ergonomic environment where both my thumbs rest on the touch pad.

Like a teenager texting, I pump with my thumbs.

The problem, of course, is that the “keys” are small, my thumbs are big, and I can’t text for crap. The result? Lots of using the “back” button. As in back to change that 100 carbs I just entered into the pump to the 10 carbs I’m actually eating. Back to change that blood sugar of 258 to the 159 it really is.

Of course, if I could get into the habit of holding the pump in my right hand and using my left index finger to enter data, a lot of these problems would probably go away. Or maybe not. Even using one finger, I often hit the number below the one I had intended, a common issue according to one of Tandem’s train-the-trainers who recently visited me at the clinic. Apparently, it’s human nature to try to see the button you seek to press. I have no doubt that in the future our species, in addition to evolving a third arm and hand to hold our Apple devices, will evolve a transparent finger to solve this issue.

And no, before you ask, being all thumbs had nothing to do with my killer low. If it had, the pump logs would have shown it. And if the pump logs are wrong, then the pump is fucked anyway, and we’d be back to square one.

The thumb issue just requires me to be a little more alert whenever I use the pump, that’s all. But I’m guessing that people who have more touch-screen time under their fingertips than I do won’t have any problems at all. Will I adapt? I don’t know. If you are 70 years old, don’t own an iPad, smart phone, or Kindle Fire—is the t:slim the pump for you? Probably not. That said, I don’t think there’s a 70-year-old in the country who doesn’t own one of the three. Oh. Wait. There’s that one guy in Rhode Island. But he’s not diabetic, anyway.

Another thing I wanted to warn you about today is to never try to reprogram your t:slim’s profiles when you are hypo. Yes, in theory the mistakes that got you into trouble are still fresh in your mind, but your mind is not what it should be. You might, for instance, get AM and PM confused and wreck a perfectly good half-functioning profile by making changes to the wrong half of the day. And of course, you couldn’t restore those changes because you hadn’t written them down anywhere, your pump has no memory of the old settings once you change them, and you have no back-up files of previous settings on your computer, as the FDA hasn’t approved any software for your pump yet.

Of course this is all very hypothetical, I’m not saying it happened to me or anything like that.

Oh, and while I’m complaining, I just discovered something else that pisses me off about the t:slim. We made a gluten-free pizza last night. It was perfectly yummy, but it kicked me in the blood sugar just as badly as any other pizza (no fair, as I only had two small pieces). Anyway, like any good pumper eating pizza, I used a combo bolus. On the t:slim pump, this requires you to “flip a switch” on one of the many bolus confirmation screens that stand between your meal and your insulin. Once you do that, after then having to tap “next,” a new screen appears:

It has two buttons: one to tell the pump how much insulin to put on the table, and another to tell it how long to stretch the rest of it out. The default is 50/50 over two hours. My gripe is this: Like the Temp Rate, it doesn’t remember your last setting. It always comes back to the 50/50 two hour. Now in my experience, most folks who use combo boli tend to use the same one again and again. One of my faves is 65% on the table with a two-and-a-half hour run. That’s my go-to combo bolus for most occasions that I like to use combo boli for.

But noooooooo, Mr. Pump, who likes to remind me of every frickin’ thing at every frickin’ step, has no memory for my preferences. What frustrates me so much about this, is that it’s such a little thing for Tandem to have gotten right. And even if there’s a compelling reason why some people would be better off always starting at zero… well, 50/50… then why couldn’t we have had an option like this in the setup menu:

Choose remember last setting used
Return to default on next use

I know Tandem says they talked to something like 4,000 type 1s in designing this machine. I keep finding myself asking: Which 4,000? Or maybe they talked to the right 4,000—but just didn’t listen to them carefully.

The Tandem t:slim is like a mirage in the desert. It looks like cool, clear water—and then as you get closer it evaporates into smoke and dry dust. They come so close to getting everything perfect, then they fuck it up at the last moment. It just makes me want to scream.

On the bright side, I’ve learned some new things about the profile programming that are done right. First, as you’re getting your settings fine-tuned, if you find that you have a segment you no longer need, you can just delete it. Poof! It’s gone, and the pump simply connects the dots for you between the segments that were before and after the one you just deleted, re-setting the end time of the previous one automatically. Cool beans. Second, you can very easily change the time of a segment by just tapping on the time and changing it. For instance, if you decided you wanted to move a basal step forward in time one hour, thanks to something you noticed while carefully studying your CGM downloads, most pumps would make you add a whole new step to do this. On one popular pump, you can’t even insert a new step, you have to reprogram every down-stream step that follows. Quite the time-consuming and frustrating process.

Oh, and speaking of frustrating, I wanted to give you the epilogue on my last two posts. Tandem hasn’t been sitting idly silent in the shadows. They’ve been very proactive about reaching out to me about the issues. How does their approach compare to other pump companies? Are they doing everything they could? Everything they should? I’ll let you be the judge of that, but here’s where we are to date:

Customer service intervention number one: Shortly after my killer-low post, one of the Tandem brass called me. His first question was, “Are you OK?” His second was, “How do you feel about the way our customer support folks treated you?” We chatted for a time about how bizarre the event was, but he was 100% sure that the pump couldn’t be behind it. It must have been me. Hmmmmm…. I think that’s what the folks at Med-T told me a time or two…Or three… Or four… Or five… And he assured me that they were a different kind of medical device company, by and for dFolks. I’ve heard that before, too. But he said something very poignant, in terms of being confident that the t:slim pumps worked the way they are supposed to. He said “Hell, our children wear these pumps.”

Customer service intervention number two: I got a call from a nice young man at Tandem last week, shortly after the severed lifeline post ran. He was wanting more details about the incident, the lot numbers, have I had any other troubles, etc. I admitted I didn’t know if my pocket-carry method was putting too much of a strain on the connection. He was adamant that it should be “stronger than that,” and that Tandem was keen on trying to find out why this one failed. Did I still have it? As a matter of fact, I do have exactly one-half of it: the cartridge. I pitched the female luer lock with the set. Half was better than nothing and he asked if I’d be willing to send it back so they could analyze it. Sure thing. And he said that while they couldn’t do anything about the forty-two bucks worth of lost insulin, they could send me a whole box of cartridges to help make up for it. Who would say “no” to an offer like that?

But I hesitated.

I hesitated, because I’m not sure I’m sticking with this pump for much longer. But not for the reasons you might be expecting. It has nothing to do with the mystery killer-low, which even I’m not convinced was caused by the pump. Why am I close to throwing in the towel on the t:Slim? You’ll have to go over to Diabetes Mine tomorrow morning to read all about that.

But my mind is not 100% made up yet, and my health insurance plan self-destructs in ten months. I have no idea how well whatever health plan I get next will cover pump supplies. If I do stick with t:Slim I might need every cartridge I can get my paws on. So naturally I accepted the box of cartridges.

Diabetics and squirrels have a lot in common in this regard.

Next time: Bubble-free system, my ass!

Saturday, February 02, 2013

Another low

Ironically, it’s Ground Hog Day. For real. As in varmint, sun, clouds, winter, and all of that stuff. But I’m thinking more along the lines of the Bill Murray movie by the same name. Remember that one?

What happens?

He lives the same day, over and over and over and over and over again. And nothing ever changes.

The Ground Hog Day low started like the last one, only later in the night. Once again, the low coasted onto the scene. A slow steady drop all night long, the CGM trace finally dipping it’s toe into the cold water of a hypo at a few minutes after five in the morning. The Dexcom woke me with the news.

In the old days (before last week) I would have suspended the pump for fifteen minutes, using a Temp Rate, drunk a half bottle of Dex 4 and rolled over and gone back to sleep.

But once bitten, twice… or perhaps one hundred times… shy. I suspended for an hour and a half and drank the whole bottle. I bet you can guess what happened next.

Right. The fucking Ground Hog does not have diabetes. Nothing ever happens twice the same way with diabetes.

The low promptly reversed. An excursion set in, and my sugar surged 100 points like a freight elevator.

Not that I’m complaining this time. I’ll take an over-corrected hypo over one that won’t turnaround any day. Meanwhile, the sun is up at my house.

I guess that means six more weeks of whacky blood sugars.