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What it's like to have the machine that keeps you alive die while you're on vacation (blog.lauramichet.com)
submitted 5 months ago by to c/latestagecapitalism@lemmy.world
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I know a lot of people whose lives depend on access to medicine. I know fewer other people whose lives also depend on the machinery and software used to dose that medicine. Insulin pumps, pacemakers, and other crucial, always-on medical equipment are crazy useful but also contain the possibility for insane frustration and resentment. I've been pretty honest over the years that I value having an insulin pump, but that I also hate the manufacturers and designers of every pump I've ever used. If you introduced me to any person who has ever designed an insulin pump I've used, I would probably punch them in the face and cuss them out in front of their children. Every single pump I've used as caused me massive problems - though none as bad as the one I'm about to describe.

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[–] 3 points 5 months ago (2 children)

Let me first state that not every type 1 will ever have the same scenario in life, but I'm type 1 using the same pump she has. My wife is type 1 using the same pump she has. I've had my pump die on vacation, I've ran out of insulin on vacation. She is making this all sound highly overblown in terms of difficulties and problems faced when running into pump problems. I've had that same company overnight me a new pump. I've had to scramble to find a long acting insulin to replace the basal coming from the pump. I'm sorry if she had a particularly bad experience with all this but that article makes every step of the process sound so much worse than the reality of having a pump is.

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  • [–] 3 points 5 months ago* (last edited 5 months ago) (1 child)

    Right? I sort of agree with her, and sort of get grumpy at the way she's presenting it. I know that I have wanted to throttle the designers (really, the software designers) of insulin pumps more than once. The original one I had two decades ago was probably the best one I ever used. It didn't have the fancy auto-update communication with the 24/7 sensors that the new ones do, but it wasn't designed by a corporate boardroom to limit any whiff of liability on their part (her irritation at the wastage of units to prime the tubing is something I have definitely ranted about many times). The childproof nature of the cartridge needle for medtronic still bugs me to this day. Tandem's idiotic injection cartridge where you need to reverse suck out air that might be in there? Jesus christ, I don't know if it's patents or some other bullshit, but the original syringe like cap on (I think it was something with a D, but not disetronic like the author had) was perfectly fine. Fucking hell. And don't even get me started on the omnipod. The amount of e-waste is ridiculous. Maybe it's better than the plastic waste from the tubing and cartridges of the others, but especially with the current bullshit going on, color me slightly worried that we're going to see supply issues there.

    I ALSO know that a pump failing does happen. You can't make them completely foolproof. I've had three or four over the years fail on me. One time it was because the unit couldn't handle sun on its screen, and the ink/stuff went completely wonky in the display, another time it was medtronic having a bad push rod, and I think the third time was with tandem like the author here had. Each time they got a new pump to me real quicksmart.

    So I'm really trying to figure out why she was specifically mad. Reading her story sounds like a madman's account of numbers, which doesn't really inspire confidence in the account. Fourteen cartridges? At a reasonable three days (I always go longer because I can build up a safety amount if insurance/shipping fucks something), that's 42 days... for a seven day trip. Ten or 12 pump sites? Why not just match the amount to the cartridges? Who brings non-matching amounts? TWO ENTIRE VIALS?!? Okay, fine, one because you're using it, and one in case the first one 'goes bad,' but that's still insane to me. I'd rather drive back the relatively (considering it's about life quality / being alive) short distance from new mexico to los angeles than risk the second bottle (because what kills one bottle can definitely kill two). Her little summary at the end even acknowledges that in the perfect world, a failing pump would still be a failing pump.

    >.>

    I will say, neeeeding long acting insulin is way overblown. Keep some syringes around, and you can use your short acting just like your pump does, with mildly more bg swings because you'll only want to bolus every two hours or so. I've had to do it multiple times when the cannula fucked up (a problem with both medtronic and tandem) repeatedly. As a personal aside, I think steel should be the default, or a standard query by the doctor should be about if failures of the plastic cannula has happened to the patient.

    Other small gripes: her description of the cartridge needle as 'big' and 'nasty.' Like, seriously? Her decision to "be meaner" on the phone. That can be handled with assertiveness and self-advocacy, which does not necessarily involve any degree of enmity.

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  • [–] 2 points 5 months ago

    I'm 100% with you. It just felt like an exercise in picking every little detail of existing with diabetes apart and complaining about everything. Look at living with diabetes without a pump at all compared to a decent one like the t.slim, her complaints just seem so overblown.

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    • [–] 2 points 5 months ago* (last edited 5 months ago)

    TLDR: She brought her insulin pump and some backup insulin supplies on a trip, but the pump failed somehow, causing her a big hassle:

    Foolishly, I did not bring the backup-of-the-backup. I never have! ... For me, the back-up-of-the-backup would be an insulin "pen" injector containing a long-acting insulin.

    She also couldn't contact her on-call diabetes doctor because she didn't have the right phone number and it wasn't on the hospital website. She managed to get through the situation but had to cut her vacation short to return home where an emergency replacement pump had been shipped. Under "What I have learned" she says:

    Here's what I will do:

    • Bring an insulin pen with me the next time I go on vacation.
    • Put the on-call number in my phone.

    I can't imagine any self-respecting nerd not having a backup for a critical device. The saying is "two is one, one is none". I usually have two or three flashlights on me at any given moment, for dog's sake.

    Anyway I'm not trying to put blame on her since she does figure out the right thing in the end. So it's a good cautionary tale. But I felt like the rant/sob story was a little bit overdone. Also, if she hadn't been able to keep the machine slightly working, the alternative would have been an expensive out-of-state ER visit, but that says it wasn't literally life and death.

    I'll also add that when I've called the main number for my mom's PCP's office after hours, the voice message system actually gives some instructions for contacting the on-call MD if needed. I've had to use it for her once or twice. I would never have thought of looking on a web site instead of using the phone. Yes millenials, phone calls are still a thing in this world.

    Anyway, "don't forget backups!" seems like the best take on the story.

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