I’m right, and everyone else is wrong?

ThreshSuspendSounds ridiculous, right?

I keep asking myself why I feel this way about the Enlite sensor.

I keep telling myself that – despite the experience of others – I can get it to work to my satisfaction. I want it to work, I really do. Really, really, really.

Lots of times, it does. When my diabetes is behaving well and my blood sugars stay in a comfortable range (say, between 70 and 200 mg/dl), Enlite’s performance is fantastic. Awesome. Impeccable. And I’m happy – very happy – and I tell myself that I’m going to stick with it after my trial (disclosure) is over.

But then something goes wrong.

My BG drops down to 50, but the sensor struggles to catch up – if it does at all (it likely bottoms out at 70, maybe 67).  Or I underestimate my lunch (as I often do), and when the graph’s inclined slope begins to flatten out at 200, I feel like I’ve got it under control until my meter insists otherwise with a beep and a brightly-colored 270 mg/dl. One time, the sensor was DOI (dead-on-insertion).

Medtronic has given me a multitude of people to go to: my “trainer” (who taught me how to use the 530G and Enlite sensor), my “StartRight rep” (who is assigned to follow new users of the device over the first couple of months), the PR folks who offered me this trial (who are awesome, but PR won’t help me in times like these), and of course the random call-center rep whose phone rings at the 24-Hour HelpLine.

I’ve been told of different ways to tape. Different ways to calibrate. Different ways to insert. Sites to avoid. Tapes to avoid. And so on, and so forth. I’ve mostly gotten beyond the “read-me-the-owners-manual-again” phase (finally!) and am getting some real personal attention. My cases have been escalated to different people and different levels of seniority. In many (but not all) cases, those escalations have reached back to me.

After a particularly starting (more accurately – and regrettably – “un-startling”) incident a couple of days ago, there are people at headquarters in California who are trying to re-create my “experience” to understand why device behaved the way they did.

To their credit, they’re trying – hard.  Really hard. They’re throwing dozens of hoops in the air, and I’m jumping through every single one of them.

When someone calls me back to discuss a particular issue, I need to stop them and find out just WHICH issue it is we’re talking about, because there are several.

I’m getting a bit dizzy and disoriented.

It’s all because I’m really trying to believe that this system can work for me, and that all the missed highs and lows, the Sensor Errors, the Motor Errors, and the first-day arbitrariness of it all can be fixed. There’s a glimmer of hope inside of me that says I don’t have to give up some of the awesome features that only the 530G and Enlite system has.

* * *

Now back to the title and first few sentences of this post.

I’ve asked who’s on trial here? quite a few times. And although I hope and believe my feedback will be valuable to Medtronic in the future, I’ve concluded that the point of this trial is for me to be able to try-before-you-buy, not for them to learn from me as a case-study.

But why?

Why am I insistent on trying to figure out if the system works or not? Lots of others have tried it, and plenty have offered up their feedback. Some also have used the Dexcom G4 and can use that as a comparison.

I don’t need to personally test-drive an Edsel to know if it’s right for me. The statistics surrounding that vehicle give a pretty clear answer.

And out of that last group I mentioned – those who’ve tried both Enlite and Dex G4 – every single one that I’ve heard from has ultimately chosen the G4. Every. Single. One. (If there’s someone who has preferred the Enlite, please let me know. I have so much to learn from them.)

And here I am, trying to force myself into a perception that I can feel comfortable driving an Edsel.

Why do I think I could buck the trend? Why do I think that My Diabetes May Vary to such an extreme that all of these other anecdotes don’t apply to me?

Why am I so unwilling to follow the lead of those who’ve learned before me? Why am I trying to prove to someone (the world? my doctor? myself?) that Enlite can be better – or at least “good enough”?

Why am I so stubborn to think that I’m right and everyone else is wrong?

* * *

Do I still believe that the Minimed 530G with Enlite, with its all-in-one form factor, its predictive alerts, its time-variable preset thresholds, its ability to backfill 40-minutes of missing sensor data, its fantastic CareLink reports, and the company’s relentless attempts to help might be right for me?

Well, yes.

But why?

* * *

Every. Single. One.

 

 

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Posted on June 13, 2014, in Continuous Glucose Monitor (CGM), Diabetes, Insulin pump and tagged . Bookmark the permalink. 17 Comments.

  1. I think you need to go with what your intuition and gut says. To me, it sounds like you want to make this work because you want to be the exception to what has obviously been set as a precident.
    I give you major kudos. You are trying to figure out the puzzle just as much as Medtronic is.

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    • Well, I want it to make it work because I like the features of the system – not just to be a nonconformist. That, and there is some satisfaction when it comes to solving a problem (though I must be mindful that a “solution” and a “workaround” are not the same thing).

      As for my gut — it’s tossing and turning right now; completely indecisive. Either that, or I just ate something a little funky.

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  2. Medtronic is very good at creating systems with good interoperability between the devices and good reporting software. Unfortunately Medtronic also has a history of having one of the components of the system be a lemon. I bought my first Medtronic system about ten years ago. The 515 pump was great, but the BD meter that accompanied it was incredibly inaccurate and untrustworthy. I had a great pump, but I did not have the system that was promised to me because I wouldn’t/couldn’t use the meter. The rep that I worked with in those days finally admitted to me that Medtronic knew there were problems and they switched to One Touch a few years later for the link meter.
    I have never tried the Enlite, but I did use the Sofsensor for several years. Somehow the fault was always on me: I didn’t insert it right, I didn’t tape it right, I didn’t calibrate it right. I switched to the Dexcom 7+, inserted it, and it worked. And it worked sensor after sensor after sensor. The Dex G4 is even better. I would love to have the Medtronic 530 integrated with the Dex G4 as the CGM. But we all know that won’t happen.
    As you make your decision, you need to decide what is most important to you. If the idea of a system is #1, then Medtronic wins. If you want a mostly accurate and easy-to-use CGM, then you know the answer is probably not with the Enlite.

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    • I remember that BD meter. I’ve upgraded to newer and better meters before – simply because they were newer and better, but the BD is the only meter I explicitly dumped because of its inaccuracy. II switched to a One Touch Ultra (before that became the official “companion meter”), and now I like the Bayer meter more than anything I’ve ever used before. I think they’ve done well in the meter department (though that’s all from 3rd party manufacturers)

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  3. Hi Scott–I’ve been “enlitened” since November. I do not have any experience with Dexcom, so I can’t comment on that end. I’ve been with Minimed for 14 years.

    Against popular opinion, I will say that I like the 530G/Enlite system. Enlite is definitely an improvement over Sof Sensors. Could Minimed have done better? Absolutely. It’s not without its problems, and I’m a little disappointed that we had to wait so long for Minimed to make so few improvements over the last product (FDA approval process aside).

    However, I like the all-in-one system. I like having Threshold Suspend features, even if it can be annoying during the day. The accuracy of the sensors for me has been on-par with the Sof Sensors, maybe a little better. As I’ve survived with my slightly-less-accurate Sof Sensors for so long, this isn’t so bad. Obviously, I’ll take the Enlite insertion process over Sof Sensors any day. I think the taping system is a definite improvement over Sof Sensor. My sensors easily stay in place for 6-7 days without changing any coverings or irritating my skin like I sometimes got with the IV 3000 tape. Yes, MM chose to back-engineer a system with the existing clamshell transmitter, but what they did works for me. A different design altogether may have worked better. I wish they would do a twist-on sensor modeled after the Quick Sets, if you know what I mean. I think that would be better.

    For me personally, Enlite’s accuracy is “good enough”. It may not be the best on the market, but it is sufficient the majority of the time and, to me, the rest of the system’s features push me over the edge to stay with Minimed. With your example above about the 200 vs. 270 after lunch–the sensor still alerted you that you were high, which caused you to test and take action, right? In my mind, it’s still serving it’s main purpose. In fact, just now I had a high alarm go off. My sensor says 232 with one up arrow. My meter said 244. I consider that accurate since the sensor says I’m coasting upwards.

    I know this isn’t the rousing “OMG YOU HAVE TO TRY A MINIMED/ENLITE SYSTEM ITS THE BEST!!!!” type of review you probably wish someone would give you to make you more confident with your choice.

    I personally am willing to take a little hit on the accuracy front to get all of the other features that Minimed has to offer. Your diabetes may vary :-)

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    • I think I agree with most everything you say here. If the sensor is trending reasonably well and it prompts me to take action, even if it can’t give me the detail I would like, is it enough? If there weren’t an alternative on the market, I would say “absolutely”. But it’s a tough pill to swallow when everyone else is using something that, supposedly, is better. It’s kind of how I feel when I sit down among others with my sluggish, clunky PC/Windows laptop while everyone else is cruising along on a sleek-looking and functioning Mac.

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  4. If it makes you feel any better, my Dex isn’t 100% accurate like others often report. (Is anything?) I don’t feel comfortable enough to treat based on my CGM read-out like some do.

    For example – my high protein breakfast apparently was leading me straight upwards toward, yet another, high alarm. However, my fingerstick said I was 79 still. Huge difference. So – I calibrated… on an up arrow. And it’s fine. (There is your difference.)

    That crap would never fly with the MedT sensors… ever.

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    • Having never used a Dex myself, I do take a bit of evil oy in hearing the “fail-stories” of the Dex. It brings it back to reality when I try to compare the two. I don’t want to build such high expectations of the G4 that, if I do decide to switch, I end up disappointed.

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  5. I think your problem is this: too intellectually curious & thoughtful. Why can’t you just follow the crowd? It’s creating a lot of hassle for you.

    Also this: you’ve articulated quite a lot of things you like about this system, so it is hard to let go. I mean, because, you know, this system might really be the better one for you.

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    • You just summed up my whole post in a couple of sentences. It’s easier to follow than to lead. And I’m already sensing the disapproving grumbles throughout the DOC when/if I announce I’m sticking with the 530G/Enlite package.

      But, hey, I got by, quite happily (and obliviously), on insulin pens for years while my doctors tried to convince me to try pumping. Eventually, I took the leap and now I’m Tubed-For-Life. I should’ve done it sooner. Would resisting change, in the CGM sense, lead me down that same road?

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  6. I’m totally with you with this Enlite Stockholm Syndrome. Except, that I don’t believe it’s my fault. I wish I had tried the the Enlite before switching from the Sof-Sensor, and–more to the point–I wish I had give Dexcom a whirl before starting the Sof-Sensor.

    It’s not us; it’s them. We’re not broken; the technology is.

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  7. Another great post, Scott! Honestly, I’m glad someone else has similar feelings to me. I have the Enlite sensor but haven’t updated yet because I still have the old sensors to use up first (since they cost me so much money I hated to just throw them out; I will never stockpile sensors again). Anyways, you make a great point. When my blood sugars are in a decent range like 100-160, my CGM seems to handle things fine but it is AWFUL at predicting lows and highs. This is one thing that really irks me because it will say I’m 80 (and no alert since my low alert is set to 75) but I’ll really be 55 on the way down. No down arrow either. I did have my low prediction alert on but it got to be so annoying and inaccurate that I turned it off.

    I’m seriously thinking about switching to Dexcom even though I just upgrade to the Enlite…hopefully the Enlite will work out better for me!

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    • I hope so! Sometimes they are so consistently dead-on with the meter that it’s frightening. Then there are other times…

      My latest theory (and I have lots of untested theories) is that the Enlite and its tiny sensor are not very tolerant of scar-tissue. So when the non-D trainers/developers wear the product to see how it works, it’s great (not to mention they don’t have the highs and lows we do). But for those of us who have infused insulin into every part of our body, it’s a bit more challenging.

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  8. I think you’ve laid out the logic/fears/concerns we all have. What if Medtronic is our only choice, what if Dexcom isn’t covered? Is Medtronic good enough? I’m on pens right now, trying to get a pump. IF I get the Enlite approved then I’ll take it, but if I don’t get the CGM part I’m not sure I want the Medtronic pump. I think I’d rather have something with a remote. Or a touch screen like my daughter’s cool t:slim. I tried to get the Dexcom approved for her when we got her new pump but insurance wouldn’t approve it and I didn’t fight b/c she doesn’t really want to wear a CGM. I think a CGM would be a great help to know if she’s trending up or down and how far. But if the CGM isn’t as accurate (Medtronic) or doesn’t tell you arrows for trending, then how helpful is it?

    I think the Enlite with thresh suspend is great, especially for overnight. But if it’s not working correctly, how helpful is it?

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