Dexy’s midnight run, part 1

These people round here
Wear beaten-down eyes sunk in smoke-dried faces
They’re so resigned to what their fate is
But not us (no, never)
No, not us (no, never)
We are far too young and clever (remember)
Too-ra-loo-ra, too-ra-loo-rye, aye
And you’ll hum this tune forever
    –Dexy’s Midnight Runners

Resigned to what my fate is? Not quite. But I am willing to see what the powers-that-be have in store for me before deciding if I want or need to change it. And if a change is in order, I’ll find a clever way to make it happen.

I decided it’s time to give “Plan B”, A.K.A. Dexy, a try

Rather than continue to fight the insurance company battle, I went ahead and ordered the Dexcom G4. (yes, it’s the one that also has “platinum” and “share” in its name, but “Dexcom Platinum G4 with Share” is just as much a mouthful as “Medtronic Minimed 530G with Enlite”, so I’ve decided to shorten the name).

I had weighed the options almost a year ago. Some things have changed since then, some have not.

Still, it seems that so many others have tried it and liked it. And those who didn’t like it? They loved it. So I can’t lose (despite my hesitations), right? After a year of using a loaner 530G (disclosure here), I figured I could commit to a year (the insurance-eligibility period) of the Dexcom G4. Or perhaps 30 days, given the return policy, if I didn’t like it — though that would lead me back to my initial predicament.

The order-process was pretty much painless, and as I expected. The insertion, guided only by the Dexcom-provided videos (because I’m too cheap to pay the $40 copay to visit my endo’s office for proper training) was also pretty much painless. It was still a bit weird-feeling at first, but either the feeling dissipated or I got used to it.

As for my reaction (after wearing it for six days, as of this writing), it’s not exactly what I had expected.

OUT OF THE BOX / CHARGING

I’d suspected that I would need to charge the receiver. The documentation said I needed to charge the receiver. The documentation said that the battery icon would appear “fully green” when it was charged.

I spent about a half hour trying to figure out if my receiver was charged or not, because all I saw was a vertically-oriented, FULLY WHITE, battery icon. I let the thing charge for three hours, and still had the same thing, so I concluded that either it must be either charged, or broken.

Apparently, the old G4 has a nice-sized horizontally-oriented battery icon which turns GREEN when it’s charged (and has an easy-to-see lightning-bolt symbol on it when charging). But the G4 with Share has a tiny vertically-oriented white icon (which goes to black as the battery drains), I guess to make room for the new Bluetooth icon that may sit next to it.

The documentation hadn’t been updated, and though I’ve seen a zillion Dexcom G4 photos in blogs, I couldn’t find one of the G4 with Share online – presumably because everyone just takes screenshots of their iPhones, which is much easier to do.

Also, over the next few days, I discovered that the Dexcom receiver can’t be charged by a normal USB cord, and my phone won’t charge with my Dexcom charger — which is really frustrating considering I have two identical-yet-incompatible micro-USB cords resting on my nightstand. It also explains why my phone battery is presently dead.

Verdict: disappointing

INSERTION / MECHANICS

May 2014 prediction on Insertion: “Intuitive, relatively painless. My CDE says that most patients can do it well without training”
May 2014 prediction on Transmitter Mechanics: “Big and boxy, snaps securely into place. Visually hides sensor.”

This may be true. I took my time to do it right, watching the video with my laptop resting on the bed (I haven’t yet joined the iThing-generation, hence you will find nothing about Share here. Also, the “offical” tutorial videos come with the unit on compact disc, and iThings don’t have CD-ROM drives).

Immediately after insertion, I looked down at the thing and thought to myself:

THIS THING IS FREAKING HUGE!

It stood out from the skin like a brick, and had that ugly, gigantic white football-shaped adhesive (imperfectly applied; hence the wrinkle) surrounding it. And this is with the newer, slimmer transmitter! Turns out, the “sensor pod” that it snaps into adds plenty of bulk itself.

Compare this to the Medtronic transmitter which sits off to the side.  After my Enlite sensor expired, I tried to tape it next to this one just to illustrate the comparison. The tape-job is awful, but the Enlite is noticeably much flatter.

I had been in close contact with (No More Shots For) Shannon during this process, since she was just beginning a week-long trial of the G4 at the same time. She had just inadvertently knocked her sensor off around the same time I put mine on, so I didn’t have a good feeling about this oversized CGM. I’ve heard of this happening before, and it only happened to me once in four years with the MedT system.

It was easy to insert, though. And I could see how it can be done one-handed on “alternate” sites; something that is quite difficult with the Enlite.  In the end, the size difference is a trade-off of one dimension for another. The larger surface-area of the Enlite causes problems as the body moves and the skin twists and stretches, yet the height of the Dexcom makes it more delicate and prone to damage.

And one more thing — after getting an hour of ???’s on my Dexcom screen following my shower for the next two days, I discovered that the transmitter wasn’t fully snapped into place. I guess the self-training wasn’t as effective as I had thought. But after I snapped it in (hoping no moisture was trapped in there), I was back in business in about half an hour.

Verdict: undecided.

RECEIVER / GRAPH

May 2014 prediction on Receiver: “Extra device to carry around — carefully, or the buttons fall off.”
May 2014 prediction on Graph:”High-res, easy to read. Not a fan of using “red” for high, as the color incites rage on top of the inherent high-BG frustration. Three levels of trend-up arrows and three levels of trend-down arrows.”

I wasn’t sure how I’d feel about carrying an extra device around. But I find that at work and in the car, I kinda prefer it. It’s small and light enough to slip into a shirt pocket, and I can easily access it (or set the receiver on my desk) without fiddling around with the pump clipped near a more private part of my body. When I found myself refereeing my son’s soccer game over the weekend (because the ref never showed up), I used the included belt-pouch clipped to my belt. The way it opens up, orienting the display in a manner suitable for looking down at it, was nice. But the pouch was very tight, and I suspect it’s responsible for so many of those those USB-port covers popping off.

The display is, without a doubt, magnificent. I didn’t think I’d much care about it, but it’s really nice and pleasing to the eye. I can now see myself letting the display factor into my choice of D-devices. I was mistaken, though, when I said last year that the red color was used for a high. In fact, it’s used for a low, but I still don’t like it. Red-on-black is difficult to read — and it still incites a Holy-shit-I’m-gonna-die-gotta-do-something-NOW! response, which I don’t like. Especially since, without predictive alerts (more on that later), the threshold is set where I want to know about it, not where I’m really in trouble.

I miss the ability to scroll-back to see prior BGs.  The trend-arrows give an idea of what’s going on, but I used to like to look back 5 or 10 minutes to assess for myself which way I’m trending and at what rate. Perhaps over time I’ll grow to understand and trust them, but not yet. And the horizontal (east) arrow is misleading, because there is ALWAYS a subtle rise or fall with my BG. Always.

Verdict: pleasantly surprised.

ALARMS

May 2014 prediction: “Only one high- and one low-threshold. No predictive alerts. Dex-in-a-glass workaround.”

First things first; I have my Dexcom receiver set for audible alerts (“Attentive”, to be exact.)  Never in my wildest dreams did I expect to do that — but there are enough vibrating alerts that precede the audible alert, in any profile, that I’m comfortable doing so. The vibrating alert is stronger than expected, with different patterns (which I’m still learning) for different alerts, and the audible alert is plenty loud for me.

Clearing the alerts is easy. Just press the center Select button. Since the receiver is a CGM only, it always works. I did catch myself once pressing Select-Right, to mimic the ESC-ACT sequence of the Medtronic. (Also, the Medtronic sequence is awkward; sometimes the alert doesn’t clear on the first shot — it depends what’s shown on the screen at the time.)

But that’s where the pleasantries end.

This is what a low alert looks like: (that white rectangle in the top corner is actual a gray area with some white trend-line dots that just didn’t come out in the photo).

That is what EVERY low alert looks like.  Whether my sensor glucose level is 85 or 65.  It shows the threshold limit, not the actual sensed glucose level, and an icon of a trend-line that seems to be flattening out.  A high alert is similar. It shows a giant 165 mg/dl (which is my set threshold), even if my sensed glucose level is really 265.

If I was 85 and my trend-line was flattening out, and perhaps making an upward tick, I’d be comfortable.  But this was the reality of the situation at that time:

Quite a different story, and quite a different response.

I appreciate the gigantic number in the alert, but for God’s sake, why can’t the number be correct!?!

But that’s not my biggest complaint about the alerts.

The beauty of the Medtronic CGM system is that there were NO SURPRISES. I was never caught off-guard by a high or low glucose reading, because I had a “Predicted Low” or “Predicted High” alert that preceded it. I’d also gotten in the habit of acting on those predicted alerts, in hopes that the actual BG-excursion wouldn’t go too far. But with the Dexcom, I’ve had plenty of surprises. I’ve found myself, more times than before, frustratingly trying to recover from an out-of-range BG than avoiding one.

I’ve tried playing with the settings, moving the thresholds tighter so that I get alerts earlier. Adjusting the “Snooze” settings (which will re-alert if the BG is still out of range) to be more frequent. Tweaking the Rise-Rate and Fall-Rate settings (which only have two settings, by the way: 2 mg/dL/min or 3 mg/dl/min). But I just don’t think I can make up for the loss of predicted alerts. But I’ve got time left in my trial, so I’m going to try…

Verdict: I can honestly see the absence of a Predictive Alert leading to my A1C rising or to more severe low BGs. We’re not talking convenience or niceties anymore. This could very well prove to be a reason for me to want to switch back to the Medtronic system.

***

Next time… I’ll share my observations on accuracy, data reporting, landfill-contribution, and trustworthiness.

 

Proactive burnout

{WARNING: This post is about 1800 words long and contains a lot of links. If you’re considering reading it while stopped at a red light, you’d best reconsider. Also, you’re driving, so put down your damn phone and pay attention to the road!}

~~~

Well, if you’ve been following my story over the past several months, you know that I tried to get a Minimed 530G with Enlite of my very own. And my insurance company denied me.

(Actually, prior to that I tried to get an Enlite CGM of my own to use with my Revel pump; but since those products aren’t made to work together, my endo denied me).

Luckily for me, the folks at Medtronic like me, and they agreed to let me keep my trial pump (which is probably a year old by now) and supply me with sensors in exchange for regular posts on The LOOP blog (Have you seen my latest, Finding Confidence: Not Letting Diabetes Hold Me Back? It’s right here.) while I go through the process with my insurance company.

The stress and anxiety in preparing my appeal was tremendous. Honestly, it feels like the appeal-process caused me more grief than diabetes itself ever has.

“March on!” “Be strong!” “Don’t give up!” everyone said. So I put on my lawyer-hat and wrote the best damn bulletproof appeal letter that UHC has ever seen. I pointed out each and every error in their incorrect decision, leaving no loophole unplugged.

It was mentally draining. I don’t know how lawyers do this stuff day-in and day-out.  I suppose it’s easier when it’s not about yourself.

~~~

Meanwhile, I’ve been finding the insertion-process of the sensors a bit unwieldy. The whole left-side of my abdomen is unusable, partly because of scar-tissue and partly because I sometimes sleep on my left side, and the Enlite doesn’t take too kindly to being slept on. Which leaves me with either the right side, or the “unapproved” locations.

My favorite insertion site with the sinister Sofsensor was my arm (as you can tell from this video that I posted last year, in my personal all-time-number-one-favorite-ever post on this blog. Watch it!), and I was able to do it with ease.  But I can’t do that with the Enlite because of the required overtape-application. At the old age of 41, I just can’t contort my body in the awkward positions that allow me to do these things anymore. (And if the last sentence ruined any secret sexual fantasies you may have had about me, I’m sorry. Maybe watching the video again will help).

Seriously, as I try to make my diabetes-device-life as simple as possible (maybe it’s the Snap-influence?), I look at myself going through this process, hoping to get it right and not ruin the sensor, every six days for the next four years, and it bums me out. That’s where the “proactive burnout” concept in the title of this blog comes in. I’m getting burned-out over things I haven’t even done yet! That’s just not healthy.

So I did what any 41-year old man does when he needs to blow off some steam. I turned to online porn videos.

No, not that kind you’re thinking of. I’m talking about the videos I found on YouTube showing the penetration of a Dexcom sensor into the subcutaneous tissue. Watching the technique puts me in a transe – I’m captivated by how predictable and intuitive it seems. It glides in smoothly and easily and doesn’t require a lot of extra products for it work. I’ve been watching these homemade Dexcom-insertion videos one after the other, and have sometimes fantasized about what it must be like to be that person.

True, the deed is done in five seconds, but that’s the whole point. We’re talking CGM insertions, remember?

~~~

I still love the things that the Minimed and Enlite offer me. It’s great to not have to carry another device around. I like how I can respond to a “High” CGM alert and can take a correction bolus without putting one thing down and picking another thing up. I love the little tick-marks on my graph that show when I’ve bolused, so I can gauge if my upward-trend is reversing in time or if I need another hit. The ability to backfill 45 minutes of data from the transmitter to the pump/receiver is priceless, especially so I can see a usable BG trend within minutes of jumping out of the swimming pool — because being disconnected AND unmonitored is one of the most frightening feelings of all. And CareLink….ooohhh.. that’s my other piece of diabetes porn. It completes me.

Yes, I’m in need of some serious help.

Threshold Suspend, however, I can do without. In fact, I keep that feature turned off 95% of the time. It never catches me off-guard (all of the bells and whistles that come before it are bound to catch my attention), and when it does kick in, either I’ve already manually suspended the pump and/or treated the low, or the sensor crapped out.

That, by the way, is why my doctor can’t say – in good conscience – that the 530G with Enlite is “medically necessary”. And in that regard, I agree with him to be honest.

~~~

So I’m stuck with a pump that I really, really like, a sensor that I’m somewhat content with, and an insurance company that doesn’t want me to have it.

On the other hand, since I started my trial just one year ago, there have been three big developments with the competition: (1) the G4 transmitter has gotten smaller, (2) the G4 algorithm has been improved, and (3) I can share my results ad nauseum.

I’m not so influenced by the ability to Share, but the other two items are really big to me. And knowing that the Nightscout crew has already figured out a way to hack into Share data tells me that someone, someday, may develop a way to Carelink-like heights in reporting data. Once the data is “open”, it’s much easier for this to happen.

Some things though, with Dexcom, haven’t changed.  It’s still another device to fumble with. It’s still bigger than the Medtronic sensor. It still won’t let me customize different alarm-thresholds between day and night. And when it awakens me from my slumber, I still can’t reel it in with my tubing to shut the damn thing up. (But on that last one, maybe that’s a good thing. Getting your attention is the whole point of a CGM, isn’t it?)

~~~
So where do I go from here?

I have no real desire to jump back into the appeals process. I just don’t have the time, the energy, or the fight in me to wage that battle right now.  Maybe in a week I’ll change my mind.

I also don’t know what the future may hold. My Revel pump warranty ran out a week ago, but the 530G has been on the market for a year and a half already. I’d hate to block myself out of the next-big-thing because I made a new 3- or 4-year commitment to what is no longer “new” technology (this applies to both the 530G and the Revel, in my opinion — despite the annoying “Have you heard?…” message on MedT’s helpline).

Though, I do know from some preliminary data that’s been released by MedT, that their next sensor is expected to have the same form-factor as the current one– with the transmitter hanging off one side. This is a big problem with Enlite because any downward pressure on the transmitter will pull up the sensor, as if they are on both sides of a seesaw. That’s what all the overtape attempts to solve. If the next sensor is, mechanically, built the same, then this problem will continue to exist, no matter how great the electro-chemical part of the sensor itself is. And the preliminary data I have on that, as well as my own experience, is very good — it works great and it’ll keep getting better. But a system is only as strong as its weakest part, and the best insulin in the world is useless if the cannula keeps falling out.

Or maybe not. There is some encouraging (or, perhaps I should say alluring) data on Afrezza, and Smart Insulin may become a reality. This could make the pumps obsolete altogether. Who knows?

The bottom line is this: I have no freaking idea what I want to do — I can’t wait to stop making decisions and stop asking permission — and to just do it and move on with my life.

Being stuck with a decision that will affect me for the next several years is leading to Proactive Burnout.

~~~

FINAL THOUGHT: It is very hard for me to write this post, particularly because of my relationship with Medtronic, which I’ve referenced above and have disclosed here. I am tremendously grateful for what they have offered me: not only the opportunity to try their equipment and to continue to use it as I go through the insurance process, but for the privilege of being a contributor on The LOOP Blog. I sent an email to them notifying them of the insurance denial, and simply stating that I’m not sure what I want to do next. That’s all I said.

We often read about “relationships” that certain bloggers have with certain vendors, and they almost always are accompanied by a statement that the thoughts expressed are not influenced by said vendor. I commend those bloggers who write this and who mean it, because it is really, really hard to do. In friendship, in business, and in these blogging-things (whatever they are), relationships are earned and not just handed out. Some reciprocity has to exist in order to maintain that relationship. Maybe not in praise, but merely in the repeated mention of a product by name, or the resistance to mentioning it in a less-than-flattering manner.

This doesn’t mean that I’ve been I’ve been dishonest in my praise of Medtronic. My thoughts are genuine and my opinions are real. If I’ve put forth any criticism, I’ve attempted to make it constructive. (You know that temporary-bolus wraparound that has bugged me for so long? THEY LISTENED! I don’t know if I really had anything to do with it, but it still makes me happy).

But a post like this, where I’m publicly contemplating if I want to continue using their CGM — even if the reasons are beyond their own control — doesn’t sit well with me. And I truthfully have some fear of repercussions. Am I stabbing them in the back? Am I destroying a relationship/friendship? Will they ask for all their stuff back tomorrow (they’re certainly entitled)? Will I forfeit a chance to try out the 640G when it becomes available (no such offer, or even a suggestion of one, has been made, BTW)? Am I thinking too materialistically? Am I thinking too sensitively?

Where do I go from here?