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!}

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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.

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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?

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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.

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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?)

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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.

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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?

 

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Posted on April 2, 2015, in Diabetes. Bookmark the permalink. 8 Comments.

  1. A lot of the items you either want or would miss, are things I’ve gained with the Animas Vibe. One tap of one button on the side of the pump shows me both my bg, Dexcom trending arrow AND IOB (all on one screen, one button) has become incredibly useful to me (more than I would have imagined). I rely on the receiver far less now although I like having the receiver or info on my phone right ahead of me on equipment at the gym. That idea of grabbing the cord when it alarms and everything being in one place? Yep. Got it. There are quite a few DOC-ers using it (not just testing it, actually using it). Might be worth looking into. Also if you just want to see it, you know how to reach me.

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    • I recently had a chance to play around with (but not wear) a Vibe (pump), and it’s really not my cup of tea — for reasons of my own as well as those shared elsewhere within the DOC. But most of all, I realized that a big PLUS of my current system is for the meter to automatically send the number to the pump, rather than have me dial it in manually. I bolus an awful lot – more than I calibrate CGMs – so if I can have only two devices talk to each other, I’d choose the pump and meter. (And the meter-of-choice would not use OneTouch Ultra strips like the Ping; there are much better meters/strips out there, like the Contour Next.) But it’s all a matter of priorities, I guess. But thanks so much for the offer.

      Liked by 1 person

  2. Thank you for being honest about your struggles with the 530G issues and your struggle with openly discussing them.
    Anyone who has any sort of relationship with any large manufacturer struggles with it; no one wants to be perceived as simply a mouthpiece. You have given the system an extraordinary amount of time to work and it’s natural to look around and wonder if the grass (or pump or CGM) is greener.
    As someone who switched from Medtronic after making a gut-wrenching decision to do what was best for me, they still valued my opinion and hopefully will take my feedback and do something with it for the future iterations of their system. I was loyal to Medtronic and am still loyal to them for what they are doing for our community. I just don’t wear their product anymore. However, I do know that many people benefit from their algorithms and systems, so I still talk about them because newer inductees into the world of diabetes need to know of all the amazing options we have these days.
    BTW – you had me rolling at the whole Dexcom p0rn video viewing. Rolling in the D, for sure.

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    • I was literally sitting in a dark room with the shades drawn, constantly peering over my shoulder to make sure no one could see what was on my screen. Because it would be really embarrassing. Seriously…who wants to get caught watching this stuff?

      But on the bigger issue, I’ve not given up on the 530G in so much as I am tempted to give up the fight. As time marches on, I could be putting myself in a position to miss out on something else. I wonder how long a CGM commitment is before being eligible for the next one. I need to check with UHC (those bastards!) on that.

      Thanks so much for your input on the industry “relationship” issue Christel, that means a lot to me…

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  3. If you want to know what it’s like to insert a sensor (though it would be for no other reason that just to feel it), I think I have one sensor that is VERY expired (like, sometime last year??) that I can send you if you want to try it. -Sarah

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  4. Scott, I suspect the situation will sort itself out over time, and instead of thinking about the right thing to do, you’ll know what the right thing to do is. Right now, it seems like the right thing to do is wait and see. In the end, I know you’ll find a solution that you can live with when you look yourself in the mirror each morning.

    I also have a Revel pump that’s a year past the warranty expiration, and I wonder sometimes if I’m waiting for the perfect new pump, or if I’m just waiting. Time will tell.

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    • Actually, Stephen, the ball’s in my court now, and if I just wait, nothing happens. Either I prepare and submit an appeal (then wait some more), or move forward with something else. But I’m sure things will work out one way or another.

      As for having an old pump and waiting for, perhaps, nothing, I can totally relate to what you’re saying. I held on to my first pump well beyond it’s end-of-warranty date.

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