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, May 29, 2013

Hidden t:Slim treasure

OMG! That icon is a button!

Today my finger brushed the blue insulin “volume” icon at the top right of my pump’s home screen and it opened a new menu called “current status.” Basically, it’s an executive summary of the settings the pump is using in the moment.

It tells me what profile is being used, the right-this-second basal drip, the last bolus, the current carb ratio, the current correction factor, my BG target, and more.

That’s cool.

Oh, and speaking of the screen, I can’t recall if I told you or not, but the pump’s screen is pretty amazing. It features bold, bright colors on a black background. It looks cool, but I suspect that function might have dictated form in this case

The use of color over black makes the pump easy to read in almost every level of light. It’s not auto-adjusting like my iPod Touch, which senses the surrounding light and makes itself brighter or dimmer as the occasion requires, but the t:slim is a triumph of balanced engineering. In pitch-dark it’s easy on the eyes. In normal room light it’s as bright and clear as a high-end plasma TV. In bright outdoor light it’s not great, but you can still read it. Only in the direct blazing sun are you totally screwed. (Wil’s workaround: cup the pump in your hands to create shade, and hold it close to your face. People will think you are trying to light a cigarette in the wind, but fuck ’em, you need insulin more than you need a good reputation.)

Still, I find the screen pretty amazing. And yes, it’s just bright enough to function well as a navigational nightlight when you have to get up to go to the bathroom in the middle of the night.

Life support system. Cool-looking consumer electronic device. Nightlight.

What more could you want?

Wednesday, May 22, 2013

Another diagnosis

It started with a lump. It ended with a diagnosis. The latest affliction to have a starring roll on my medical chart’s problem list is: morbus dupuytren, also known as Dupuytren’s Disease.

I see worried faces. Frowns. What? No one has the courage to ask yet? OK, let me give you some more background on the latest unwelcome guest to set up house in my body.

Apparently it’s more common after the age of 50. My half-centry mark is four months away. Apparenlty it’s more common in men than women. Although I’m not the manliest of men, I do have a Y Chromosome. Apparently people of northern European descent are at higher risk of the disease. Thank you very much, Swedish grandmother. Risk also increases among those who smoke and use alchhol—hang on, this is upsetting me so much I need to go refill my whiskey glass, and step outside for a smoke. And, and of course, you guessed it… Dupuytren’s is more common among people with diabetes, especially those of us dependent on insulin. Is it any wonder I got it? With that many risk factors, there was probably no ducking this particular bullet.

Can it be… cured, you ask? Are you going to be OK? Yeah, not to worry. This one of those things that sounds worse than it is. I was exercising my dramatic literary license again. This newest disease will be an annoyance, but will barely rise to the level of a challenge. Or that’s what I say now. In a year I may be singing a different tune, because one side effect of Dupuytren’s that might prove a minor annoyance to any other person could have a huge impact on me, given one of the ways I earn a living. More about that in a minute.

Let me introduce you to our next lesson in modern diseases. (Doctors learn by studying every disease known to mankind. I learn medicine by “catching” one damn thing after another.) Dupuytren’s starts off as a “knot” of tissue on the palm. It rests below the skin, on top of the muscle. Right now, mine is about as big around as a dime. It feels like a sphere, firm, hard, like I have a small marble trapped under my skin. It isn’t painful. Slowly, over time, I’m told I can expect it to evolve, sprouting like an acorn, growing tree-like roots to become a thick cord, which, like a miniature invading anaconda, will wrap itself around the ligaments of my fingers, pulling them backwards, causing my ring and pinkie fingers to contract more and more and more until it will be impossible for me to do “everyday activities” like placing my hand in my pocket, putting on a glove, shaking hands, or typing. At that point it’s called Dupuytren’s Contracture. And at that point, this harmless little disease could have a major impact on my life. How soon? It’s anyone’s guess. Sometimes it’s a wildfire. Sometimes it’s a snail race in slow motion. We’ll have to wait and see. And resist the temptation to grab a steak knife and cut the little fucker out of there!

No one knows for sure what causes Dupuytren’s, but (naturally) it’s thought to be some sort of autoimmune reaction. According to Mayo Clinic, it can hit other parts of my body too, for instance my feet or my penis.

We’re not going to talk about that. Hell, I’m not even going to think about that.

What can be done? Once it gets bad enough, there are options. A tattoo gun can be used to riddle it full of holes so it loosens its grip. Or maybe they used something more surgical, I forget. I’m too worried about my feet and my, well, you know... They can also cut the cord that’s strangling the ligaments in some cases. And the nuclear option is to open up the hand and try to clean out all the problematic tissue.

But it’s still too early. Right now I have to wait for the seed to sprout. Wait for it to start growing roots that will tangle into cords, and wait to see if the cords or my fingers win the coming tug-of-war.

I’ll write about it for as long as I can.

And that’s what scares me.

Wednesday, May 15, 2013

Return of the “???” monster

The bane of many a Dexcom 7 Plus user was the infamous triple question mark icon:


Officially, it meant that the receiver couldn’t understand the signals coming off of the sensor. Basically the receiver was asking the CGM sensor, “What the fuck are you saying?” Of course users would also start off by asking the receiver, “What the fuck?” and end (hours later) by screaming at the receiver, “WHAT THE FUCK?!!!!!”

Naturally, the dreaded triple-Q icon showed up at the worst possible times: when you were going to bed with a ton of insulin on board, when you had the flu, were getting married or divorced, going to prom, or competing in a pie-eating contest.

A triple-Q could last for... well, that was the crazy thing. It might last 15 minutes. It might last an hour. It might last six hours. It might go on forever. For me, being hypo unaware, I’d pull the plug after four hours. Longer than that was just too risky for my body and too much for my nerves.

Of course you could try feeding the system more fingersticks to snap it out of its funk. That’s what we all did, even though the manual said not to. And you could try shutting the sensor down and restarting it, but then you had the whole two-hour start up thing with no guarantee it would work. It was frustrating, scary, and highly vexing. You never knew when, or if, you would get one.

The triple-Q was also the harbinger of transmitter death. Yep. The only way you knew your transmitter was giving up the ghost in those days was a combination of ??? and crappy readings. That’s one big improvement of the new G4. It will tell you when the transmitter is starting to crap out. There will be a pop-up screen, so they tell me, and you can always go Main Menu >> Settings >> Device Info, and there it is, third from the top: Transmitter Battery.

Mine is still OK, although it’s getting a little long in the tooth. My G4 was in the first wave shipped after FDA approval back in late October of last year. That means it’s about 6 and a half months old. In transmitter years that’s geriatric. It doesn’t have long to live. In one of those Deals with the Devil, the engineers at Dexom agreed to the following pact with the Prince of Darkness: Give us power over long life. To get the marvelous new transmitter range we all love (and demanded) they had to sacrifice how long the thing would last.

I chatted with the friendly Dex crew at their booth at the AACE meeting in Phoenix a couple of weeks ago, and they are preparing their souls for the inevitable flood of calls and fights with insurance companies now that we are six months post-launch.

Fights? What fights?

Well, even though the G4 prescription clearly states that a second transmitter at six months is part of the deal, the Dex gang aren’t sure how the insurance plans will really react as this starts to come up for the first time. The folks at Dex are expecting some rough water until everyone gets onboard with the tides of the new world order.

OK, I promise to give up on nautical metaphors.

But back to triple-Q. When the new G4 arrived, I was disappointed to see the triple-Q icon was in the manual. (Yes, I actually read the manual cover to cover.) But that said, for months and months and months I didn’t see one. I began to think I wouldn’t. Then it reared its ugly little head back in mid-December, ironically on my sister’s birthday. Yeah, I know, I should ‘a posted about it. I can’t remember why I didn’t.

Then in Arizona two weeks ago, this happened to me:

And, yes, you read that right. The time on the lower right of the monitor is correct. Of course this happened at 5:35 in the morning. Mountain Daylight Time. Which Arizona doesn’t observe. It was 4:35 in the morning local time. Damn it.

Did the triple-Q wake me up? No. It’s a silent killer. You only know you’ve got it when you look to see your blood sugar and see that you can’t see it. What woke me up was the sensor suddenly thinking I was at 50 mg/dL and about to die shortly before the stupid thing crapped out. (I wasn’t at 50 mg/dL and I wasn’t about to die.)

Anyway, as my transmitter is geriatric, I worried that this latest triple-Q might be the first sign of an impending transmitter heart attack, transmitter stroke, or other form of transmitter death. So the next morning… actually later that same morning, but after the sun woke up… I asked one of the tech guys at the Dex booth about it, and he told me that, no, the triple-Q isn’t a sign of a dying transmitter anymore. Once the transmitter gets to within a week or two of its death, it will signal the receiver and you’ll get a pop up telling you to call customer service for a replacement.

So the triple-Q is still with us. Less common than before, in my experience, and the few times I’ve gotten them they haven’t lasted very long. And now the triple-Q is no longer a harbinger of transmitter death. But it’s still vexing that every once and a while the receiver can’t understand what the sensor is telling it. WTF?

Bottom line, same monster: Just a bit tamer.

Wednesday, May 08, 2013

Us and Them

The endos are all staying at the Sheraton Downtown. I, however, am twenty-two blocks away. At the Motel 6. On the south side of the motel is the railroad track. Every night freight trains rumble through, setting off all the car alarms in the neighborhood. On the east side of the motel is the threshold of runway 08 of the Phoenix Sky Harbor international airport. The deep-throated roar of airplanes is not quite constant, but close to it. That’s OK. I like airplanes. Just to the north of my motel is an abandoned building that used to belong to a physic. She’s now out of business.

Funny. You’d think she would’ve seen it coming.

But this gulf in geography turned out to be the least of the differences between me and the endos. You see, silly me, I always thought that physicians were supposed to love their patients and hate the diseases that plague them, not the other way around. But as I learned this week the endos, as a group, love diabetes and hate us.

That’s the number one take-home message I got covering the 22nd annual scientific and clinical congress of the American Association of Clinical Endocrinologists in Phoenix for Diabetes Mine.

What I saw at the convention, time and time again, was a deep fascination with anything that had to do with any scientific aspect of the disease, accompanied by a very short attention span for anything that had to do with patients.

Some of it you have to expect. Of course they get swept up in the excitement of the mysterious underpinnings of the disease process. One researcher was showing us images of microscope slides taken from the pancreas of a 12-year-old boy who died of DKA. The scientist was thrilled because the pancreas had been removed and frozen right after the boy died, giving a snapshot of raging onset diabetes at its dark nadir. The clinicians were equally enthusiastic.

I was appalled.

No one, not one of them, expressed the slightest thought about—or awareness of—the human tragedy behind this pathology sample. A shattered family. A young life cut short. No word of thanks was spoken to the parents who donated the organ in the face of this great tragedy, no doubt in the hope that their nightmare wouldn’t be repeated for other parents.

From surgeons, I would expect no better. Surgeons are cold fish, almost always. But from endos, who see their patients again and again for years and years, I expected better.

But cold, distant, uncaring docs—or ones swept up in the intellectual excitement of the latest genetic research—I could probably have tolerated. What really disappointed me was the way they talked about us. Frankly, they acted like diabetes educators. They made snide jokes about their patients, complained bitterly about us, blamed us for all their failures, showed no sympathy or understanding for what it’s like to live with this disease, and spent a lot of time basically just dissin’ people with diabetes. I don’t think I’ve ever spent a whole week with such a big group of anti-diabetic whiners in my life.

Towards the end of the conference, I was offered a free ticket to the “gala ball” and dinner. I passed. Company like that I can do without. I drove back across town and spent my evening alone in my dingy little motel room.

With the rumbling of trains and the roaring of planes for company.

Wednesday, May 01, 2013

Another Kleenex moment in the trenches

Flipping through his blood-sugar logbook was like using one of those cartoon flipbooks where the horse runs across the top of the page. The slow changes, logged a day at a time, became a gallop when time was accelerated by the turning of the pages. It was fascinating. And horrifying. Sickening, actually, as the full impact of what I was seeing dawned on me: I was watching his death in slow motion.

In the summer of 2011 his morning fasting sugars were running in the 120s. By early 2012 they were generally over 200. By the fall of last year 300s where the rule. Now, in the 400s.

His doctor told him to take his medication. So he did. Every day.

His doctor told him to test his blood sugar. So he did. Every day.

But no one ever took the time to tell him what the numbers meant. When to worry. When to call. Apparently, no one ever looked at the numbers he carefully logged every day and took with him to every doctor’s visit, either. That made me mad.

More than mad. Angry. Furious. Enraged.

Here was a guy who did everything he was told to do, but was let down by the system he placed his trust in. Next to his logbook on my desk was the little cash register receipt-like printout from our urinalysis machine. There was protein in his urine. LOTS of protein. His kidneys were failing. It fell to me to tell him. It fell to me to teach him for the first time the vocabulary of numbers. To explain to him the truths revealed when you listen to what the numbers say. To explain to him why meeting me was too little, too late. To explain to him why we were giving him a nephrology referral.

I wish someone had sent him to our clinic three years ago. Hell, two years ago. Or even six month ago! Then maybe I could have made a difference. But it was too late. He’s another casualty in the war we call Diabetes. A solider who was given a gun, then sent into combat with no training. No ammunition. Now he’s become another diabetes complication statistic. But to me, he isn’t just a statistic. Not just another number. He is a man. A scared man, with a kind face, and sad eyes.

This is diabetes in the Real World.

And on days like this I don’t know whether to cry or to scream.