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

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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!).

Saturday, May 17, 2014

Lost


I’ve lost something.

Me.

Everyone else says they can see me. But I can’t seem to find myself.

It’s an odd sensation. There’s really nothing wrong, but nothing feels right, either. Well, yeah, I’m still running tired. I nap a lot. Even as an infant, according to my mother, I never napped. And I’m a bit forgetful. Yesterday, I drove to Santa Fe without my wallet and without enough gas to get home. But that could happen to any stressed-out, over-worked 50-year-old man.

I still seem to be able to do my work just fine. Yes, it takes me longer to write than before, but my editors assure me that the quality is unchanged. I can still look at blood sugar patterns and understand what’s going on in my patient’s bodies. I still remember all the diabetes meds, what they do, and what their dangers are. I’m still able to spot the lies and self-delusions some of my patients bring to the table. I am still able to comfort the newly diagnosed, and to inspire the old hands who have fallen off the wagon to get back on and back into the game.

So I am functioning. 

But it I feel hollow. Like an actor playing a part, instead of a real, living, breathing human being. I guess that’s it. I don’t feel that I’m alive, that I’m living.

Something is lost.

I can’t put my finger on it, but I just don’t feel… well, Me.

My joy, my zest, my inner-sparkle seems to have died with the chickenpox.


It never occurred to me that a disease could spare your body but kill your soul.


Saturday, May 03, 2014

Hostage of Ignorance


It was an odd call, to say the least. On the other end of the line was a nurse who works for my patient’s health insurance company. They were trying to decide whether or not to deny my patient’s insulin pump supplies.

Now this Patient has been on a pump for about seven years. She’s actually a type 2, but she might as well be one of us. Pre-pump she took multiple daily injections of two kinds of insulin. She’s brittle as hell. She struggles with her control. There’s a lot of variation in her BGLs, but her A1Cs generally run in the low sevens, not a bad outcome for her efforts.

Apparently the insurance company had been looking at a recent visit note. On that day, my patient had suffered a pod failure, and just like one of us, in a matter of a few hours her BGL had rocketed up, up, up to 463mg/dL. She had changed the pod, took a correction, and was waiting for the resumed flow of insulin to take effect. As a T2, her risk of DKA from a hyperglycemia this brief was nil, so her main health issue was that she was PISSED off. Madder than a wet hen, in fact.

But I guess the insurance nurse didn’t look at the most recent pump downloads that show my lady tests 6-8 times per day, that her numbers generally run between 80-250 with a good solid average of 130,  OR that less than 5% of her readings are above 250 mg/dL. Instead, the nurse at the insurance company was totally focused on this one high BLG reading, and told me they were wondering why they were paying so much money for insulin pump supplies if this was all the better the results were.

I was stunned for a moment. Everyone has a screaming high number now and again. That’s the cost of doing business with diabetes. Taking someone’s pump away isn’t likely to improve that. Probably, the opposite is true. So I pulled up the note, glanced over it, and explained to the insurance nurse that my patient had suffered a pod failure a few hours before, that’s all.

To which the nurse asked me: “What’s a pod?”

Oh. But it gets worse. It turns out this nurse knew pretty much nothing about insulin pumps of any kind. Actually, she didn’t seem to know very much about diabetes, either.

Well, at least she called to ask, rather than just getting out her red stamp pad. And, luckily, it all ended well. The nurse was polite and courteous to me, and I was able to lobby for the value of the supplies and she cleared them for shipment.

But in the course of the conversation she happened to mention she’d soon be attending her 50th reunion at her nursing school later in the month.

Let’s see…. 50 + probable student age of 20 is 70.

So a 70-plus-year-old nurse who knows nothing about pumps and diabetes is holding my patient’s supplies hostage? Not that there’s anything wrong with advanced age. Experience counts. And I plan to work well into my 90s, as I don’t have a dime saved for my retirement, but why was someone with no knowledge of pumps in a position to be making these kinds of decisions?


Sunday, April 13, 2014

Rudderless in the current


My iPod alarm goes off, playing the funky Xylophone beat that greets me every morning. Of course, it’s not morning. In point of fact, it’s three in the afternoon.

Has another hour past? I guess so. I silence the alarm with the swipe of my thumb. It’s time to test my blood sugar. Again.


I’m testing my blood sugar on the hour, every hour, during the day; and every two hours all night long. Have I lost my mind? No. I’ve lost my CGM and now I’m doing my best not to lose my life as well.


Since my CGM went offline not quite two days ago, I’ve done 34 fingersticks. By the time I get this written, edited, and posted, the teststrip body count will be higher. Do my fingers ache? Sure, but not as much as my heart does. Of course, this won’t be forever. This is emergency medicine. My salvation is coming in a FedEx truck, but it’s not coming from Dexcom, it’s coming from the kindness of a fellow patient. Is Dexcom sending anything to help? Oh, yes. More about that later, but their idea of help is perverted, to say the least.

I’m sure a lot of folks who read this will think I’m over-reacting, or being paranoid. I think not. There are some facts to consider. First, I’m as brittle as hell. My diabetes has temper tantrums that make the world’s most spoiled brat look well behaved. Despite what I think to be a better-than average understanding of all things diabetes, my quest for control is a struggle—to say the least. Mystery spikes plague me. The smallest of doses of insulin sometimes trigger epic crashes. And to top it off I don’t feel my lows. At all. I have total hypo unawareness and thus, total CGM dependence. Without this gear, it is unlikely I would be alive today to write this.

As many of you know, I was the 30th person in the USA to get CGM, and I’ve had it virtually uninterrupted since that time. Over the years I’ve become increasingly dependent on it, and have built my treatment routine around it. Brittle folks like me have unexpected responses to identical stimuli. What works one day doesn’t work the next. One day a given correction for, say a blood sugar of 250, will drive me low. The next day it has no effect at all. On a third day that same insulin acts like sugar-water and my BGL soars upwards.

I’ve learned that no amount of prior planning can help me, but that I can live in the moment with near-continuous constant adjustments. As I drift up, I layer on the insulin. As I drift downwards I slowly increase the carbs. My control is never perfect this way, but it rarely suffers extremes, either.

So for me CGM isn’t so much about continuous monitoring as it is about continuous therapy.

But without CGM, my ship is completely rudderless. Not only can’t I control my blood sugar, but because I am 100% hypo unaware, without the CGM I no longer feel safe. You can’t test often enough to detect a sudden drop you are incapable of feeling. Driving could kill me, or worse, kill someone else. Hell, sitting in my living room watching TV could kill me, too. Frightening is not a strong enough word. Terrifying is not a strong enough word. We don’t have a word strong enough. It is a flavor of fear like a dull ache that never diminishes.

I’m too damn tired from lack of sleep to take you through the whole infuriating story; let’s just say that I’m the victim of a combination of corporate greed and corporate incompetence. I did everything right, but still got screwed, and what makes me maddest is the fact that every frickin’ time I’ve talked to Dexcom they tell me a different story. They have the best product, so I guess they feel they don’t need good service. I disagree. I say they have an obligation that borders on holy. I don’t begrudge them their profits, but I sure as hell begrudge them their carless attitude with our lives.


 And they just don’t get it, any of it. On my last call to Dexcom—in the middle of the night on Friday—the tech support people were powerless to help me with the transmitter. They advised me that customer service people, apparently the only ones who “might” be able to send me a loaner transmitter to make up for their paperwork mistakes that are delaying an insurance-covered replacement, work on Saturday mornings, and to call back then. (It turns out the customer service side don’t work Saturday. I had to leave them a nasty voice mail telling them to up-the-fuck-date their website and let the people on the other end of the building know what their working hours really are). Oh, but meanwhile the tech folks will be happy to replace the sensor I was wearing when the transmitter died. They are sending it overnight by FedEx.

A sensor without a transmitter is about as useful as film without a camera, a battery without a flashlight, ink without a quill.

To me, a sensor without a transmitter is insulin without a syringe.


Friday, April 11, 2014

Fear is….

Tonight without CGM for the first time since 2005 thanks to piss-poor customer service from Dexcom and a greedy insurance company. Insurance refused to replace until transmitter low bat "warning" on Dex G4. Warning only gave 39 hours before total transmitter failure, not one week. Dex dropped the ball and did not submit paperwork for a full day. Now weekend. Both Dex and Insurance closed until Monday. Might as well be an eternity with total hypo unawareness. Hell of a reward for spending the last decade in low-paying diabetes eduction--can't even afford what I need to stay alive...

Thursday, February 13, 2014

Insulin for breakfast


I was ambushed in the hallway not ten paces from the door. I had slipped in the ambulance entrance because that’s the most likely way to get into the building and to my office without being seen. Of course, I wasn’t likely to succeed because my office faces the giant glassed-in fish bowl that’s the nurses’ station, but it was still worth a try.

As this was going to be my first day seeing patients again, I wanted a slow start. I was, well, nervous. Nervous that I’d forget something important. Nervous that I’d make a mistake. Not confident that I can function in my clinical role, once again, I have not packed lunch.

I was supposed to have half an hour to get my bearings, and do a through chart review on the two patients I was to see this morning. I normally do a brief chart review anyway, but I’d been gone so long that who knows what might have happened in my absence. Plus, I simply needed to remember who the hell these people were in the first place.

Last week, when I peered ahead at my schedule, some of the names were unfamiliar to me. I called up their records to see their faces and strangers starred back at me from their driver’s license-like mug shots on the computer. Yet below the mug shots were notes, apparently written by me, documenting visit after visit after visit after visit. Clearly these people were my patients and many of them, it appeared, I had worked with for years. But both the visits and the people themselves were missing from my memory. They were alien and the chart notes seemed like someone else’s—stirring no memories, awakening no recall.

It was worse than unnerving.

Of course, if that had happened with all the patients scheduled to see me this week, I would have left my keys and resignation on my desk and walked away. But luckily not all my patients were blank canvasses. Some were fuzzy, like distant mirages, but still in my memory. Isn’t she my Butterfinger addict? Hmmm…. Is that the one with the little dog… No, that’s her sister. Wait, isn’t she the one who stabbed her husband with a steak knife at the family reunion?

Yet still others were crystal clear. I could remember everything about them: The patterns of their blood sugars, the meds they used now, the meds we tried but failed with in the past, what motivated them, what their roadblocks are, the names of their children, their stresses and challenges.

Why some were so clear; some were so fuzzy; and others so completely absent from my mind, I have no clue.

But the slow start I was geared up for was not to be. As I made my way down the hall, one of the providers popped out of a treatment room like a spider and literally grabbed me. With a vice-grip-like hold on my bicep, she spun me around in the opposite direction of the safety of my office. “I need you to do an insulin start. Right now.” A cold chill cascaded over my body. Insulin starts are the most delicate, most difficult, most dangerous thing that I do clinically.

Normally, I relish the opportunity.

Insulin, done right, is the best weapon in our anti-diabetes armory. Insulin, done right, makes people happy and whole again. But insulin has a bad rep. It’s widely feared for no fair reason. To start insulin is more than just a, here, this is how the pen works. We have to deal with the fear factor and overcome it. Patients need to understand how it works, and how it doesn’t work. I need to ensure the starting dose is high enough to work but not too high. Bringing people down too quickly triggers relative hypoglycemia, and worse. Retinopathy “explodes” when sugars are normalized too quickly. But choose a dose too low to do any good, and patients get frustrated at taking shots without results.

Normally, I’d have a week’s worth of BGL data to study and make sure we knew the range, the curve, the shape, the lowest reading and the highest. And I’d have an hour with the patient.

This time I had no data and a time frame of only 15 minutes.

My new patient is a “visitor” from Mexico, pawned off on us by the free clinic as being too complicated for them to manage. Her sugars are screaming high. Her English is good but her husband doesn’t speak a word. He’s come along to be supportive, but she needs to provide him a running translation.

I feel like a fish out of water. A shirt without a tail. A bear out of the woods. OK. I seem to be out of good idioms.

After being introduced, I take the couple back to my office. My brain is like a car on a cold morning. I keep turning the key and it goes Wrrrrrrr….Wrrrrrrr…..Wrrrrrrr…. but never quite fires up and runs. I try to keep a calm exterior, but inside I’m freaking out.

Don’t fuck this up. Don’t fuck this up. Don’t fuck this up.

She has kind eyes, but is afraid. Dissipating that fear is job one. Assessing her further, I note that she is globally chubby, with significant truncal fat, and has heavy staining of acanthosis nigricans around her neck. Adding all of this up tells me she’s probably more insulin resistant than usual. Her starting dose needs to be adjusted accordingly. I throw my go-bag in the corner, take off my coat, and put it across the back of my chair. I motion to the pair of chairs under my new painting of the little airplane diving into the storm. Siéntese, por favor.  

Here we go again, little plane. Into the jaws of the storm we’re both destined to fly.

I sit in my chair and open my rat’s nest drawer. My approach to drawers is to simply let them fill up until you can’t cram another thing into them, or until you have to move your office. Over the last eight years, I’ve found myself moving offices more often than cleaning drawers.

I rummage around for a minute, and then get out a saline training pen and a few pen needles and lay them on my desktop. Something is missing. There should be more stuff. Think. Think, damn it!

I don’t have a clock in my office, but I swear I hear one ticking.

Like a swarm of gnats, snippets of thoughts buzz around in my head. Bzzzz...…site rotation…titration…air shot…bzzzz…needle sheath…plunger…hold time…hypo warning…bzzzz…sharps disposal…BG target...room temp…bzzzz...bzzzz...bzzzz...bzzzz...

I can’t really grasp one complete thought. They are all in motion, all fragmentary, a blizzard of fragmentary sticky notes that are not yet a speech. They are all the things I need to tell her but I can’t figure out where to start and how to weave the thoughts together. In the past the various elements just flow through my mind, mouth, and hands. Normally, when it comes to insulin starts, I’m graceful.

Today is the mental equivalent of the first time I wore ice skates.

Um… sorry if I seem a little distracted. I’ve been out for a time and I’m just back on the job…

I don’t know how it went. To me it seemed awkward. Rushed. But I don’t think I did anything wrong and Bill Clinton didn’t interrupt the process. I guess I’ll know how I did at her follow up in two weeks time. Or sooner if I fucked up.

As the day wears on, we have two new diagnoses that I don’t think I handled as well as I should have. I also see some old patients. I’m able to download their meters with little difficulty, but the swirling patterns of dots and lines aren’t whispering to me in their secret language. I’m not seeing the mystic ebb and flow of insulin and sugar that normally appears to me like heat applied to messages written in invisible ink.

The pain in my gut rises and falls like the tide, but as the short day wears on I find that more and more, the fog in my mind is beginning to lift.

My last patient is a pumper on a CGM. I plug her Dex 4 into my laptop and the computer sucks the data out of the device like an electronic vampire. I turn the screen to share it with the patient and an advanced nurse practitioner student who has been assigned to me for the back half of the day to begin to learn all things diabetes. I warned her she was being led by a blind man.

“Wow,” says my student.

“Augh,” says my patient.

I don’t say anything. The tangled mass of colored trace lines on the computer screen looks like the cat has gotten into grandma’s yarn collection. I can’t make sense of it, but fell I should be able to. I wrote the book on CGM, fer God’s sake. Literally.

The silence stretchs on. Uncomfortably so.

Finally, my student clears her throat, “Uh… What am I’m looking at?” she asks.

I snort. I have no fucking idea. It’s the truth, but probably not the best teaching method. My patient giggles. They love it when I swear. OK, I tell my student, this is an X-Y graph. We are looking at time left to right and the level of the blood sugar vertically. The device checks the glucose level in the interstical fluid every five minutes. Each test has a mark. The trail of marks is called a trace. I run my finger along the computer screen to show her. The marks change color every day and we can… we can… Suddenly, I see it. My finger freezes. Wait a minute.

Well, what do we have here? Hidden in the forest, I suddenly spot a grove of trees. Amongst the chaos, a pattern is emerging.

Wrrrrrrr….Wrrrrrrr…..Brum-burm-burm…Vroom!

My brain restarts.

Nearly hidden by wide variation during her sleeping hours, and the insane tangle of variety that follows her breakfast, her blood sugar traces show a pre-dawn rise. Every day. In a flash I know she needs more basal insulin an hour upstream. I smile, This we can fix.

Tomorrow I’ll pack lunch.