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!).

Saturday, July 28, 2007

It’s my party; and I’ll cry if I want too….

(you all know the tune)…you’d cry to if it happened to you. Screeeeeeeeeeeeeeeeeeeeeeeeechkkkkk (sound of needle ripping across record album as the record player is kicked out the window).

I’m holding the letter in my hand. I read it twice. Three times. Four times, because my brain can’t process the words on the page. I can’t fathom the shear level of stupidity it represents. Finally it sinks in and my blood pressure starts to rise….

Arrrrrrrrrrrrrrrrrrrrrrg! Whatthefuck? One box? You gotta be kidding me!

I just got the official approval letter for the CGM sensors from Pres. I’ve been approved, all right. For one box of sensors. You read that right. One lousy box. I’ve been paying out of pocket for going on two years. I finally get my insurance on board. For only one box. It’s so infuriating it’s almost funny. Almost.

Well, the British burned our capital once upon a time, but we still won the war of 1812 and our two countries are now the best of friends, so I guess this could still have a happy ending. But ONE box????

Oh yes, and on the bottom of the letter, in bold type, it says: Presbyterian Health Plan—working to improve your health.

Uh huh.

Saturday, July 21, 2007

Extra, extra, read all about it!

I dropped the phone. From the floor near my feet I heard a distant voice, “Hello, are you there, sir?” It was an unexpected Guardian angel. The call was from MedT. They had been advised that Presbyterian Health had approved coverage for my CGM sensors.

Yeah. Read it again. My new health insurance is covering my sensors. Holy Shit. The war was over and I barely was aware we’d fired the first shot.

Regular readers may recall a while back that I dropped my long time Blue Cross and took the Pres HMO insurance we have at the clinic. Shortly before that happened both my PCP Doc and my Endo retired in the same month. Doctorless, I found myself a new provider, a fellow T-1. I’ve felt in good hands from the start, and a few months ago we discussed starting the battle for the CGM.

She wrote a letter and her girl Friday (who didn’t take seriously the question I asked when I called her a few minutes later: Candy or Flowers?) did some leg work and called a few times. I was out of the loop, not really expecting anything to happen yet. I figured we’d be denied, would appeal, and so on until two days before I died when I’d be approved. Ut oh. I hope this doesn’t mean I’ll be dead in 48 hours…..

Anyway, my “DM Coverage” on this policy is 50%. That means I pay for a full half of all pump stuff and now, CGM sensors. It would also mean that if I ever needed a new pump I’d have to pay for half of it. Which means the two pumps I have now (CoZmo and ParaPump) will have to last me the rest of my life. Some of you out there will be saying, ‘that sucks, how unfair.’

Not me. I’m thrilled, thrilled, thrilled. I’ve been paying full price out of pocket for sensors since the beginning of this adventure. The sensors have taken a huge bite out of our family budget, at one time being our single largest monthly expense—even more than our insurance in earlier times when sensors were more and insurance was less.

So I’m thrilled #1 because I’ll be paying less money. And I’m thrilled #2 because any insurance coverage for any diabetic for any CGM is a evolutionary step in the right direction for all of us. And I’m thrilled #3 because I’ll be paying less money.

In other news, I had not realized that a lot of folks got shook up when the FDA announced a Class II recall on MedT insulin pumps recently.

Class II recall. Sounds real scary. But it’s not.

For what it is worth, a Class I recall is the one you want to be scared of. A Class I is for something that will probably kill you. One example at the FDA website is a “defective artificial hear valve.” A Class II recall is for products that “might cause a temporary health problem, or pose only a slight threat of a serious nature.” There is also a Class III as well, reserved for spending tax-payer dollars on addressing such serious threats as “leaks in a bottled drink” or typos on labels that “violate FDA labeling” regs.

I got Class II recall a while back at the clinic on Abbott meters. One of the button covers fell off of a few meters. Boom. Class 2 recall. The upshot of it was that if you had one of the few meters in the universe that had a button fall off you called Abbott and they sent you a new one. Hell, even without a recall they would have sent you a new meter. They want to sell you test strips. Call any meter company in the world and ask for a one of their meters “on the house” and I’ll bet it will be in your post office box inside of a week.

On the Class II subject, there is even a sleaze-bag company out there that scares my senior citizens by sending them a letter saying “last year there were a gazillion Class II recalls of blood glucose monitors (true). Your meter could be one of them! (maybe, but not likely). Call us today and we’ll send you a Free meter (and start charging Medicare for shipping you strips).

So back to MedT’s recall of the pumps. I got a letter at the clinic in April that basically said, “hey, tell your pumpers that they shouldn’t wear their pumps in an MRI machine.” I put it on the bulletin board outside my office door, but didn’t pay it too much attention to it otherwise, as it is common sense not to wear any electronic device, be it an I-pod, cell phone, or insulin pump anywhere near an MRI. Hell, you shouldn’t even wear jewelry near those puppies. I probably didn’t even read the whole letter.

Here’s what happened: even though the MRI warning is buried somewhere in the user’s manual, the FDA required MedT to re-label insulin pumps. I guess a few people got too near the machines with their pumps on. The pump will alarm, but if you clear it without looking at the alarm (which we all do sometimes) you could be in trouble. So future pumps will have a little logo on the back that apparently is the universal “do not MRI icon.” I don’t know if it is a little MRI machine with the classic red-circle-and-slash through it. I doubt it, but it’s a nice mental image. I’m not sure how much that will do to solve the problem. But the FDA is looking out for your interests.

So this is a field recall. You don’t need to send your pump in. You don’t really even need to worry about it. If you get an MRI leave your pump in the changing room. Interestingly, if you have had an MRI and you are worriedover the phone call MedT. My sources there tell me it is possible to actually test the pump over the phone to ensure it is working properly. I’m not sure if that is cool or scary or both. ScaryCool? If there is any sort of problem there will be a FedEx truck in your future. I’m assured that the pumps have been rigorously tested for dental X-ray, airport security systems, amusement park rides, and even nuclear power plants (seriously, this is really true, I didn’t make that last one up). In all cases no problem. Just avoid MRI machines. Probably CAT scanners too, but no one is really talking about that.

By the way, one tidbit I picked up reviewing the recall announcement at the FDA web site was the number of pumps in the field: 334,000. You are not alone.

Another news tidbit: there is now more room in your cooler for beer. Or wine, or sugar-free popsicles, or what ever your traveling vice is. Why? Because you do not need to keep your sensors cold any more.

According to a letter from MedT, the sensors can be stored between 36 degrees and 80 degrees Fahrenheit. So don’t leave them on the dash-board of your car or in a snow bank.

That said, they still ship ‘em cold. And MedT tells me that users may keep sensors in the fridge “if they choose to.” Personally, I plan to keep my “spares” in the fridge at the lab with my insulin, partly out of habit, partly out of paranoia, and partly because our house is often warmer than 80 degrees in the summer months. Hey, it is New Mexico, after all. But now travel is just that much easier. If I could only make it through air port security with out being treated like a terrorist, that would be great. Any body remember when it was actually fun to fly?

Also, did I remember to tell you folks that the price on the sensors has come down a couple of times since this all started? The first time the price dropped was bout 15 seconds after the FDA approved the DexCom. Hmmmmmm…… I’m sure that was just pure coincidence. Then they drifted down again as some point. We’re now at $350 per box of ten—which I’m pretty sure includes the shipping—not cheap given they’ve always sent them UPS Red. Now that the sensors have more flexible temperature storage it will be interesting to see if MedT switches to two day shipping instead. By the way, they also sell a four pack of sensors for $145, more per sensor by a few bucks but easier on the cash flow for the out-of-pocket crowd (which is most users).

I also got a press release (or was it an email?) about changes to CareLink. There is a new CareLink in town, CareLink Pro. This lets Doc’s access and store downloads from their patients in one handy location. No more sitting in your Endo’s office while he asks you, “now what was your CareLink password again?”

I checked with some contacts at MedT to see if the Pro version would crunch the data for Docs and make some recommendations. Not yet, but that is on the horizon. I bet that makes the MedT lawyers lay awake at night staring at the ceiling. Pro does accept data from something like 17 different meters, not just MedT products; so that’s cool. I think there have been some minor changes to the patient version too.

And incase you are living under a rock, in March the FDA approved the MedT CGM products for diabetic patients as young as seven-years-old, one hell of a blessing for parents of diabetic children. The only wrinkle is that the “Pediatric Model” of both the ParaPump and the sexy new Guardian will not let parents set a low glucose threshold below 90 mg/dl. This is spun as being “for added safety,” but is a two edged sword. I guess you do what you gotta do to get a product through the FDA, but I can envision a plague of unnecessary alarms driving both parent and child up a tree.

That said, T-1 kiddos can drop like a rock, or a crow bar, or a plane whose wings fell of, or rocket pointed the wrong direction, or….... So maybe it’s a good thing to have some extra warning.

Saturday, July 14, 2007

Of tall ships and taller buildings

I’m in touch with my sea-faring ancestors, high up in the rigging fighting with billowing sailcloth as the ship creaks and groans through the waves, swaying to and fro.

Of course, except for one small mud puddle, there is no water to be seen for miles and miles and miles. From my lofty, but unstable, perch I can see the distant horizon 360 degrees around me.

Yes, like an idiot, I am on top of my Ramada trying to attach a smooth layer of shade cloth. Now for those of you who live in more moderate climates, I need to tell you what a Ramada is. The back porch of our house is about 16x16 feet. It sits near the edge of the hill and commands a pretty decent view, if I say so myself. Towering over it, almost ten feet high is the Ramada. It is a roof of sorts, made up of closely spaced 2x6 timbers. Its job is to provide shade and make outdoor living spaces usable in the hot New Mexico summers.

Mine has had it’s share of troubles. First, it was built by a guy who probably had never built one before. No, not me. This dates back to the days when I could hire people to do stuff I’m incapable of or ill-inclined to do.

A proper Ramada would have it’s posts dug into the ground and securely cemented in place for all time, making it a truly rugged structure. Mine is attached to the surface of the deck with cheesy aluminum brackets. Hundreds of pounds of timber thus sway frightenly in high winds.

All of that said, if the whole thing was going to come crashing down, it would have done so by now.

At some times of the day the Ramada does it’s job of casting shade. Most of the time, however, it casts stripes of shade. Some people grow grapes or roses, or some sort of plants over the top to add more shade. Quite a few years ago we opted for reed cane. Worked great. Looked great. My 100-pound-soaking-wet handy man put the reed cane up for me.

Over the years the reed cane was wiped out by wind, hail, and relentless sunshine. Leave a diet soda can in your window in New Mexico for a month and the paint will disappear, leaving you with a half-shiny can.

Having other things more pressing to worry about, I took the easiest course of action on the Ramada. I did nothing.

Until yesterday.

Now that the background is almost set, we can get back to the story with only more little detour. We need to talk about vice. I’m down to only one: overpriced coffee. Yes, I am addicted to Starbucks. All my other vices have fallen to the wayside. I was thinking the other day that it is pathetic to only have one vice, so I opened up my vice closet and dusted off one of my favorites. I’ve started smoking a pipe again.

When I was about 15-years-old I came home one night smelling of cigarette smoke. Instead of blowing a gasket, my mother calmly said, “I’ll bet if you asked your father for a pipe for Christmas, he’d buy you one.” Pipe smoke is “puffed,” not inhaled to the lungs so while not exactly good for you (and vice shouldn’t be); it is quite a bit less dangerous than other types of burning tobacco.

So I got up my courage and asked my pipe-smoking college professor father for one, and sure enough, he bought me a pipe for Christmas. I still have that one. But my favorite pipe I bought from a gypsy woman in Granada, Spain, the next year. It has a sort of Celtic-style carving, is just the right size and shape to suit me, and smokes well.

When I got up on a rare lazy morning recently it occurred to me that it would be delightful to read the final chapter in Thom Hartmann’s Screwed, the Undeclared War Against the Middle Class on my back porch with a cup of Starbucks French Roast and a pipe of Black Cavendish. Whereupon I found my self constantly turning this way and that to keep the part of the page I was reading in one of the stripes of shadow.

It was time to do something about the Ramada.

The book, by the way, I highly recommend. Just take your blood pressure medicine first.

So off to Home Depot we went for a shade solution, and found a very reasonably priced roll of shade cloth, that according to my calculations on my PDA came within a few square feet of being just the right size for the job.

I also bought some special metal tacks for attaching the shade cloth. They’d make the Spanish Inquisition proud. They are stamped in sheets of five each and you have to break them apart. Even wearing heavy leather gloves I skewered my finger with one. Bled for almost six hours before I could get it to stop.

Anyway, I sun-screened up and ventured out on the metal roof of the house….hot-hot-hot-hot-hot. Ouch-ouch-ouch-ouch-ouch!!!! And then onto the Ramada. I’m not really afraid of heights. Or dying. But dying by falling off a high place is pretty low on my list of things I want to do.

I had no established protocol for how to move around on the top of this thing. You can’t really walk. Any one beam is not necessarily stable enough to stand on. And they are just too far apart to stand on two at once.

After some hit and miss experimenting, that luckily didn’t involve falling off the Ramada into the cactus gardens below, I settled on a course of action that involved me straddling three beams, and letting my feet and lower legs dangle. Sort of like riding a horse.

I worked my way around the top, using a hammer to pull out all of the large staples used to attach the now long-gone reed cane. Then I hammered in the lose nails. Then the real trouble began. The six foot roll of fabric was folded in half. I’m all the way out at the very edge. Nothing but space and a broken neck below me. I’m trying to get the first edge established. I’ve got the roll in my lap. Tupperware container of tacks balanced on a timber. Hammer at the ready. The sun is blazing down and a light breeze kicks up to flap the cloth in my face.

Which is when I knew what it must have been like for my sea-faring ancestors, perched precariously high upon the masts of their clipper ships. Brave dudes.

Anyway, as you might have guessed as I survived to write this, so I didn’t kill myself. Hammering for hours while scampering around on beams also put me in touch with the spirit of all of the brave souls that built the early skyscrapers.

Anyway, this does actually have a point to it. Trivia Question for all of you: I spent almost five hours in the blazing sun doing much harder manual labor than usual, plus a wee bit of stress. How many finger sticks do you think I took?

Answer: None!

With my handy-dandy CGM, I was able to keep an eye on my BGL the entire time. Amazingly it stayed stable. My theory: the extra adrenaline hit was balanced out by the exercise. Or visa versa if you prefer.

So I have my quibbles with the pump (putting it mildly); but I remain a committed fan of the MedT CGM product. Either the sensors have gotten better or I’ve gotten better at using them. I’ve not had one fail since I re-started using them this spring. I’ve also not had one fail to be scary-accurate. The damn things are really, really, really good. So long as you calibrate in calm water and calibrate rarely the results are simply amazing.

Why the (insert your choice of expletives here) insurance companies can’t see the power of this product and its benefit to their bottom line is beyond me. Seems like second grade math to me. D-folk with constant feedback on their BGLs can exercise superior control and safety. That means less complications and fewer late-night ER visits. That means less money going from insurance bank accounts to hospital bank accounts. Makes me want to scream.

Well, if you’ll excuse me, I’ll climb down off of my soap box now, fill my pipe with a pleasant Cavendish, and enjoy my shade.

Saturday, July 07, 2007

Post cards from the edge of the epidemic

The silence has gone on too long. I’m frantically searching my brain for a solution, any solution to the problem. But I don’t have the tools I need to fight this. The 13-year-old sits quietly, staring at his hands. His mother fidgets. I’ve got his log book in my hand. On my computer, the screen is open to the Assessments page of the electronic medical record.

I have to enter a Dx code. On his first visit I coded him as a diabetes screening. On his second I coded him as unspecified glucose intolerance. But now, looking at his log book, I know what I have to do. He’s got two “Hi” readings. The meter isn’t being friendly. Plus three or four in the 400s. I sigh and pull the key board to me and enter 250.00; he’s now officially and for all time a Type-2 diabetic. I extend my hand to him, “welcome to my club.”

The club is growing at an alarming rate. It all came from our school screening that I wrote about a few weeks ago. Now I’m suffering from the fall out, and I’m seeing the same thing again, and again, and again, and again. Kids with complete first phase insulin response failure. They wake up in the morning at 88 BGL. Then they eat. Then they rocket up to 200, 300, 400, 500, or “Hi.”

So how the fuck do I treat this? These are not T-1s, remember. And I can’t use the one drug that would probably help. Byetta.

Byetta would… sorry… does restore first phase insulin response. It would be perfect. It would knock the sugars down, give the pancreas a break, and has no real risk of hypos. But its not approved for under 18. We could give it off-label if any of these kids were rich. But they’re not. This is a very poor part of the world. Most of these parents have a hard time keeping the heat on in the winter, much less pay for God-awful expensive drugs.

To be fair, I gotta say, Amylin has been super about providing Patient Assistance Program drugs to my adults. Thousands of dollars of Byetta has flowed into our clinic via PAP to help those over-18-years-of-age patients of little means.

AvandiaRoulette and Actos are also not options, the kids are too young again. I can use Metforim, but why bother? It doesn’t treat the problem I’m facing.

That leaves me with only one arrow in my quiver: NovoLog. But do I really want to put dozens and dozens of early teens on fast-acting insulin? Many of these kids are immature. The one in my office, although calm at the moment, is medicated for attention deficit disorder. He also plays with matches and starts fires, according to his mother.

He’d kill himself on insulin.

But if I do nothing the diabetes will take decades off his life.