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Having your insulin pump die while you're on vacation

• nivethan 5mo ago
  This is a terrifying and illuminating read.
• ahoka 5mo ago
  I stopped reading where he just googled what can be wrong with his life support medical aid instead of calling some kind of support line.
  • oompydoompy74 5mo ago
    The author is a woman. She does call a support line during the course of all of this. The support line was fairly unhelpful.
    • kbcohhcoh 5mo ago
      the support line did everything she asked, and explicitly asked if she already had a backup plan in place, to which the author said "yes". the author admits to not even asking for the pump to be sent directly to her. the author admits to even ignoring the internet advice to call support, then gets mad that she wasted insulin while doing so
      • kbcohhcoh 5mo ago
        "I will probably also be meaner to everyone who gets me on the phone in the future during an emergency. I was trying specifically to not do that, but I suppose it's helpful to be mean when your medical equipment is failing." advocating for yourself is not being mean
        • wizzwizz4 5mo ago
          No, but it feels that way if you're an agreeable people-pleaser. (This is, of course, a bad habit, but it's a common one, and it's not one that merely acknowledging will divest you of.)
          • asyx 5mo ago
            Lots of mean things she writes in her blog post for a people pleaser though. Like, I get it, but the blog should then be about how being a people pleaser almost killed her and not how bad support was at reading her mind.
            • wizzwizz4 5mo ago
              It is. > Admittedly, I did have an opportunity to cause a fuss which I did not choose to take […] > This was dumb of me. I should have caused a bigger fuss. If I'd bitched to more people and made more phone calls and […] > So I escaped this extremely risky and stupid problem - partially of the pump's making, partially of my own creation - with zero consequences other than the fact […] > I hope that you can understand why - even when I made the situation worse by not throwing a big enough fit - I held in my heart […] The blog post says things other than "this was all my fault" (which, channelling Nancy G. Leveson, is not something we should ever say about the failure of a complex system), but it does very much say what you say it should say. The vast majority of the "mean things" in this blog post are polite descriptions of the facts; the remainder are rather mild expressions of frustration, plus one death wish against a hypothetical someone exhibiting an extremely obnoxious communication behaviour.
  • TimorousBestie 5mo ago
    I’ve called my father’s insulin pump customer support number once before and the medical advice they gave us would have endangered his life if I had carried it out (according to his GP, whom we called after to confirm).
• 1123581321 5mo ago
  I’m diabetic and found this strange for a few reasons. There’s a postscript in the blog post wishing death from diabetes on any diabetic who tries to point any of it out—so I’ll leave it at that.
  • oompydoompy74 5mo ago
    I empathize with the author. I have severe panic attacks and getting advice from someone who has maybe had a little anxiety once is infuriating.
  • an0malous 5mo ago
    I wish you life from diabetes to cancel out her curse
  • wizzwizz4 5mo ago
    The postscript in the blog post specifically wishes death on any diabetic who tries to point this out "from the perspective of Perfect, Unerring Care" via email: that's the "some percent crazy assholes" from https://www.smbc-comics.com/comic/2013-04-07 https://www.smbc-comics.com/comic/2013-04-07. I think it's fair to post more appropriate commentary in a public forum, where it's aimed at audiences who don't already know everything the author does.
  • yellow_lead 5mo ago
    > If you were even thinking of emailing me to criticize me about what I did, I hope you die. Of diabetes. Found your comment strange, did you read this incorrectly?
    • 1123581321 5mo ago
      I don’t want to risk writing something I would decide to email later!
  • indrora 5mo ago
    The author isn't talking about you. The author is talking about the people who will inevitably email with explanations about how she's doing something wrong or things are not as bad as they seem or any number of other options. I have asthma in a particular form, and when people hear that I get triggered by extensive exercise and hill climbs and that I have to take things slow (it's gotten progressively worse in the last two years after COVID) I will inevitably be told "well you need to exercise more." Exercise can't fix scar tissue, bob. Because that's what I'm fighting. I don't have a full pair of adult lungs. I have two lungs that got the shit beaten out of them when I was 3. Could I use some more exercise? Certainly. Will it magically fix my asthma? no.
• Symbiote 5mo ago
  I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.
  • oompydoompy74 5mo ago
    Not every blog is written to be discussed on Hacker News. That being said I enjoyed it and found it illuminating. It could be a regional difference, but I’m from the South East US and didn’t mind the direct communication style at all. I much prefer someone to speak their feelings rather than being nice for the sake of nicities.
    • bitmasher9 5mo ago
      I don’t think it’s appropriate to wish ill on other people. When writing I think it’s just as important to consider the impact of your words as it is to express your ideas and emotions. These sorts of words can make people feel unsafe, and in extreme situations can inspire similar feelings in other people with similar problems. Maybe someone that might take more direct action than a blogpost. I understand different regions have different communication style, but the murder rate in the US is too high for us to joke about these sorts of things.
      • oompydoompy74 5mo ago
        I disagree, but I appreciate your perspective. I think it’s fairly clear that the author is using exaggerated speech to make a point and convey their feelings. The reason I mentioned regional differences is I often find myself having this disagreement with my west coast compatriots.
    • senordevnyc 5mo ago
      Ironic, because my experience of living in the south is that the fake niceties are deeply ingrained in the culture. Classic fun example: “bless your heart” basically means “fuck you”.
      • 5mo ago
• lm7272 5mo ago
  Bizarre intro to the blog. Been a pump user for 20 years, forever grateful to the technology that allowed me to live a pretty unrestricted life. Sympathy of course to anyone who's had it harder than I have ofc
• bluesounddirect 5mo ago
  My wife is a t1d and has the same pump. It sucks their support staff has no idea how the thing works or what its failure modes are. My wife once had her x2 tell her it gave here a 40 unit bolis out of the blue . This would have killed her. While in the er support from x2 said something like "there is no way for it to do this .. you must be wrong.. are you reading the display correctly .." All in all the x2 plus dexcom was supposed to be a closed loop cgm plus pump. It rarely cuts insulin delivery on low blood sugar, or it does it way too late to matter .
  • bluesounddirect 5mo ago
    also it didn't give here 40 units the pump failed .
  • asyx 5mo ago
    That’s kinda why I don’t want a pump. I’d rather deal with it myself than have some garbage corporation cut every corner and save every cent they can on a device that is keeping me alive. I’d rather have a glucose pump to be honest. I don’t need long lasting insulin so I don’t really need to care about dying in my sleep but lows scare me more than highs.
    • spacedcowboy 5mo ago
      I mean I'd far rather have the pump than not, also a t1d. I dont bother wearing it at night though. All my blood sugar does is decline overnight, and the pump isn't the signal that things are going awry, that's the GCM. The GCM will still signal the pump, my phone and my watch to wake me if I need to eat carbs (vanishingly rare) and the pump never changes my blood sugar overnight anyway as far as I can tell. So I disconnect it, put it back on in the day so I can manage things while I eat food.
      • asyx 5mo ago
        You don’t have dawn syndrome? Mine shoots up to 200 in the morning without food. If I don’t eat breakfast I take 5 units fast acting in the morning to keep the levels down. I just don’t see pens as so much of a hassle that I’d give up the control of a pen for the convenience of a pump.
• chemicalsnakes 5mo ago
  Uh, okay, she didn’t advocate for herself on the phone and darkly alludes to not knowing what could have happened if she’d told them she wasn’t at her home and needed her replacement pump sent to another address. I think they would’ve sent it to the hotel without a problem. Her takeaway is that she should have been “meaner” on the phone, but I think just honestly expressing her situation would cover it. And “I don't think it's possible to live without resentment for the technology keeping you alive.” This plus all the stuff at the top of the post about how she hates manufacturers of insulin pumps and she’s trapped. I have lived in a very developed country, and I currently live in a least-developed country. I am pretty grateful for the technology that keeps life in the developed world safe and comfortable.
  • redserk 5mo ago
    Blaming her is not the right call on this. The technology is absolutely amazing for the quality of life it’s given us, especially those with medical conditions, but the failure of technology in these scenarios can lead to hospitalization or death. The customer care line requesting information about a plan means the patient’s care in a will-be life-threatening scenario was not prioritized. Deprioritizing patient care when death is a possibility is a grim outcome regardless of where you live.
    • senordevnyc 5mo ago
      I didn’t take their comment to be about blame, it’s more about a pragmatic view of what’s going to be more effective for an individual. Sure, you can tell your diabetic daughter that the world should be one way, and rant and rave about it all you want, but none of that will keep her alive.
    • s1artibartfast 5mo ago
      It means the exact opposite. It is like when the tow truck operator asked if you are stopped in a safe location. If you say you have a backup to the pump, then they know there is negligible risk. Its why they asked.
    • kelnos 5mo ago
• dreamcompiler 5mo ago
  One other thing to try if you find yourself in a "need meds away from home" situation: Ask a local pharmacist. Find a local pharmacy -- preferably not a mega-corporate chain pharmacy like Walgreens or CVS -- and ask to speak to the pharmacist. Tell them your situation. They can often call your regular pharmacy and get your prescription transferred to themselves temporarily over the phone without even getting your doctor involved (if they have your meds in stock). This works better talking to the pharmacist in person than on the phone, especially if you need a prescription that invokes DEA scrutiny like pain meds. I recommend avoiding the chain pharmacies not because their pharmacists are bad, but because they are often hamstrung by corporate policies that won't let them do things like this without a lot of red tape. Pharmacists are medical professionals. Use them.
  • phil21 5mo ago
    Pharmacists also don’t need your doctor to write a prescription. They can dispense on their own authority. Scheduled drugs probably have made this more complicated. But if you’re looking for something that can’t get you high when abused it’s worth a shot. For something like insulin a pharmacist can get you an emergency supply without calling anyone, should they see fit. Might be rare to find such a person though these days.
• antasvara 5mo ago
  Reading this, my takeaway was less about the pump and more about how every part of the medical system is disconnected from every other part. There were some mistakes made but they were all pretty reasonable decisions. But the situation that caused this in order: 1. The support line for the pump won't suggest sending it to where you are because you say you have a backup plan. 2. The support line also isn't a doctor; they can't evaluate how good or bad your backup plan is, just how to deal with the pump. 3. You message your GP. But the message system doesn't connect you live to the on-call practitioner; that's a phone number that is not easily findable. 4. Your GP fills a prescription for the backup pen and sends it to the closest pharmacy. 5. The pharmacy takes the prescription, but they don't actually know if they can fill it until later. They also can't find a pharmacy farther than 25 miles away from the current location. Each issue is reasonable by itself, but the end result is that the patient had to call 2 different people, go to a pharmacy, and still wasn't able to get what they needed. The gaps that could have (theoretically) been patched are: 1. Support could have known the possible workarounds. I realize that legally it could have been dicey, but the "fix" suggested on Reddit seems like something that could have been mentioned as an interim solution. 2. Your GP could make it more obvious which communication method reaches the office on a weekend. 3. The GP should be able to talk to the pharmacy to ensure they have the medication in the prescription. 4. The pharmacy should be able to search farther than 25 miles to find a medication for a prescription they've been sent. It should be much more difficult for a patient to hit every edge case like this, especially when just being able to talk to each other would have stopped some of these.
  • bonyt 5mo ago
    > Each issue is reasonable by itself... The problem of many hands - when responsibilities in a group that collectively does harm are divided between many people, who can be held accountable when each person individually acted reasonably? I think organizations are, more and more, siloing roles in this way intentionally (or at least emergently), such that blame can only ever be collective if they do harm. Since it's so much harder to redress collective blame, this can be effective in avoiding consequence entirely.
    • 5mo ago
• zamadatix 5mo ago
  It is insane how weird and complicated it is to get unscheduled medical care.
• epolanski 5mo ago
  [flagged]
  • broost3r 5mo ago
    cool story, but this is about Type 1.
  • ndjfjcjf 5mo ago
    [dead]
  • thomascountz 5mo ago
    Your comment is off-topic (and seemly very private). I think you may have commented on the wrong post.
  • ewy1 5mo ago
    type 1 diabetes is not influenced by diet, lifestyle or exercise which you could have known if you had read the first few paragraphs of the blog you're commenting about
    • epolanski 5mo ago
      [flagged]
      • ewy1 5mo ago
        i'm sympathetic to her health concerns (obviously) but the blog post is about type 1 and your girlfriend seems to have type 2. although they have similar names, their causes are unrelated. from my perspective you are responding to a blog about the complications of a terrible, incurable illness with "you need more exercise" which has no impact on type 1. for completeness: yes, diet and exercise does change the amount of insulin a type 1 diabetic needs, but it does not "get better" or "go away". the type 1 diabetics i know actually live very healthy lives by necessity because they need to constantly keep track of their carb consumption so they can adjust the insulin amount.
  • djeastm 5mo ago
• petesergeant 5mo ago
  > I know that going to an emergency room would have cost me an insane amount of money I just don’t understand how Americans put up with this shit. I live in a country that only has private healthcare, and the idea that you can be insured and also that an emergency room visit can be expensive rather than specifically what the insurance is meant to cover is nuts.
  • thomascountz 5mo ago
    If vulnerable individuals don't "...put up with this shit," they get sick and die. To understand this, you have to understand that there isn't usually an alternative.
    • markus92 5mo ago
      I think OP means more why politics hasn't changed this. Even at state level there's plenty of stuff that can be done about this but seemingly no one cares enough.
    • petesergeant 5mo ago
      Vulnerable individuals are often the ones covered by Medicare/Medicaid. It’s the middle-class this seems to affect.
  • toast0 5mo ago
    > also that an emergency room visit can be expensive rather than specifically what the insurance is meant to cover is nuts. This part is basically a matter of degree. If I have full coverage on my car and total it in a single car accident, insurance will replace it, but I have to cover the deductable ($500-$2000 usually). If I go to the emergency room, health insurance will cover it, but there's a deductable of like $50-$500 depending on the plan. That's a lot of money if you could have dealt with your issue at urgent care (usually half the deductable) or later at a GP. It's not a lot of money compared to what the ER bills your insurance for most things. Having doctors, nurses, pharmacy, and support staff onsite 24/7 with backups on call in order to handle 'anything', proof of ability to pay not required, is exensive and the costs get placed on the users that can pay. That's not to say it's not shit. My favorite is when you go to urgent care, but they can't do whatever it is you need done, so they send you to the ER, and you get to pay the deductable for urgent care, then the deductable for the ER, then get the mailer for your insurance 'did you know, you can go to urgent care instead of the ER?' ... My next favorite is when you show up to urgent care at 10 am and they tell you they're all booked for the day. But, I don't know what we're supposed to do if we don't like it. Refusing to participate doesn't make the system better. Half of the country votes for a party that's unwilling to make things better; the other half votes for a party that's might try once a generation. The only hope we have is to qualify for Medicare and make it to Medicare age, and live somewhere where there's enough Medicare accepting doctors to take care of things at that age.
• Group_B 5mo ago
  [flagged]
• jeffrallen 5mo ago
  My aunt had her American Express die on vacation and they had a new one in her hands, in her hotel room, at 8 am the next morning. Priorities. Sigh.
  • ufmace 5mo ago
    I wonder if it would be possible for a business to exist that was like super double ultra premium T1 diabetes support. Maybe it's really expensive and not many people can afford it, at least at first, but it'd be like you can call up an on-call desk any time, day or night, 24x7x365, and immediately talk to somebody who can pull up your full situation and history and do anything necessary to fix any possible problem. Get anything you need shipped to you anywhere next-day, get you premium service at any local pharmacies or hospitals, already set up to do exactly what you need before you even get there, sweet-talk the tiny local mom-and-pop pharmacy, produce all of the right papers and work the right angles at the huge national chain pharmacy, track down the one that actually has or can do what you need, etc. What would it be like if you were able to actually throw enough money at the problem to create a perfect worry-free experience for at least some people.
    • kccqzy 5mo ago
      It sounds possible, but insurance probably won’t cover it. So this super double ultra premium T1 support will probably be only for the people rich enough to not need insurance.
• tronicdude 5mo ago
  I’m also a type 1 and I force myself to use pens every few months so I don’t get jumped like this. We need implantable insulin pumps again so bad. Also fuck tandem, I’ve moved to Omnipod (which has its own issues, but better than tandem).
  • MengerSponge 5mo ago
    Pro tip: get a Rx for your pens sent to a national pharmacy that your insurance supports, but don't fill it. That way, if you have this issue while traveling, you can just walk into a pharmacy and walk out in half an hour with what you need
    • cadr 5mo ago
      Or just bring a bunch of disposable needles with you and draw from your vials that you already have for filling your pump.
      • MengerSponge 5mo ago
        you don't fill your pump with basal insulin
    • officialchicken 5mo ago
      Pro-pro tip for T1d's: If you relocate (or visit) the EU and get a Rx - IMMEDIATELY FILL it once as soon as you get it - otherwise it could be invalidated after 15 days - and it won't be valid when you try to use it the first time.
• thomascountz 5mo ago
  This feels important to read, and I appreciate the author's candor. You have to remember that not every character (for lack of a better word) in every story you read, needs to be morally justified in their thoughts, emotions, and actions. This author is angry, humiliated, scared for their life. It's not compelling to discuss their thoughts without empathy. If you don't think you would feel or say the same, were you in their shoes, imagine "what would need to be true for me to feel, think, act that way?" This way of empathizing, where you assume the role of another without assuming superiority, may help you better understand what the author is trying to communicate. What must it be like, what might they be going through, how vulnerable must it feel? The author is dealing with a minute-by-minute reminder of how easy their life could end. Most readers will have never experienced this. On top of this, they are dependent on a company and system, which is only tangentially designed to keep their body alive. During a time when the author dare to have a vacation away from home, an experience something many of us don't realize we take for granted (maybe not financially, but the fact we are able-bodied enough), they are faced with losing their life like never before. I think the author needs no justification for their apparent rage. It's refreshing to hear a voice we don't often hear. We are often raised being told these feelings of grief and rage are bad, unmoral, crass. That we should judge others who express them. Here is one person's story you happened to come across. If you have trouble empathizing, remember, at best, we are all just temporarily able-bodied. You may do well to reckon with these experiences now, before your existential challenges are picked apart as inconvenient or uncomfortable for others.
• ewy1 5mo ago
  i have multiple family members with t1d and having experienced their stories i expected this blog to be filled with anti-patient practises, planned obsolesence and the like. however, i was relieved to read that's not the case.
• s1artibartfast 5mo ago
  >I don't think it's possible to live without resentment for the technology keeping you alive. > Somewhere in the back of my head, something is always screaming: it's fucking stupid that I have to do this at all!! I think it all comes down to this attitude. Interesting with the self awareness in other parts of the article. I too get frustrated when I feel vulnerable and helpless. What helps me is reflecting on all the capabilities i actually have. They might feel less bitter and dependent if they try injecting manually. Then a pump isn't a life necessity, but a convenience.
• bdcravens 5mo ago
  I had an X2 (and before that, a couple of Minimed pumps), then I switched to the Omnipod. The Omnipod is a disposable pump you swap out every 3 days, so less of an issue. However every time I've gotten a new pump, the diabetes educators always instruct you to have a backup plan, whether that's your insulin vial you may have already brought (even non-disposable pumps require you to swap out the reservoir every 3 days, so you should have insulin with you) along with old-school injection needles, or an insulin pen with needle tips.
  • cadr 5mo ago
    Omnipod for the win. But, yeah, I have a bunch of disposable needles in my kit as a backup. Even so, travel is stressful. My carry on is full of backup pods/sensors. But now that my insurance is being annoying and only filling a month at a time, I don't always have an extra...
    • bdcravens 5mo ago
      I'm fortunate to have the income to support buying backups when I had insurance issues. During the Dexcom G6/G7 switchover and the switch to the Omnipod, I had just filled a bunch of G7s but the Omnipod didn't support it yet, so I ended up having to buy G6s out of pocket. Even with coupons from the manufacturer, it was still costing me $200/month.
      • officialchicken 5mo ago
        When I lived there (or visit family), a Costco Gold card and store pharmacy visit can help a lot - it was around $150/mo for G6 last September. I'll switch over to G7 some time this summer. The Costco plan more than pays for itself using the built-in rewards program and rx discounts if you're paying out-of-pocket.
  • Trasmatta 5mo ago
    Also on the Omnipod, and I also always travel with both extra pods AND extra insulin pens (basal and bolus insulin). That way I can switch back to MDI if for whatever reason my pods fail or I can't use them.
• bradleyy 5mo ago
  This is literally the reason I'm still on multiple daily injections (MDI). I'm sympathetic to the author, I spent 50+ years without Type 1, and a few with it. Just this morning, I ended up bolusing correctly, but then an emergency caused me to perform a lot more exercise than I had planned on. Then, bam, I'm paralyzed in bed, thinking about calling the ambulance, eating sour patch kids. And believe me, when sour patch kids are an effective medicine, you have a disease that must just exist for spite. So yeah, I feel like I can control conditions better with MDI, and can't seem to make the jump to a pump, even though it'd almost certainly improve my health and long-term survivability.
  • officialchicken 5mo ago
    I'm having almost the exact same day as you today - except for the past 50+ years I have been t1d, and I'm back on MDI. I quit using a pump about 15 years ago. And it definitely improved my QoL just by not having to deal with all the insurance hassles. Removing that stress alone I think will extend my life longer than using a pump will. > And believe me, when sour patch kids are an effective medicine, you have a disease that must just exist for spite. Feel free to ignore below if spk's were just the closest, but there are better flavored non-melting options that also travel well. I keep some Transcend gels (available from Amazon) on my nightstand and scattered all around my house. They'll "burn" if you need to suck down three or more back-to-back (I rarely need them, and when I do it's usually only 1) but they're a zillion times better than any candy with predictable (5-10 mins) time for the glucose to hit you - unlike candy. They recently changed the packaging design, so you'll need to snip a tiny bit off the corner (sorta like a tiny pre-cut) in case you need to open with the convulsions.
    • bradleyy 5mo ago
      I always carry ice packs and a yeti cooler. I have some other carry rigs, but 99/100 times if you see me out and about, that's me: cowboy hat, wayfarers, and yeti cooler. So I just keep sour patch kids all the time in my pack. But I'm always up for something else, especially when the SPKs are in an "ick" season. I appreciate the recommendation. SPKs have an absurdly high glycemic index though and seem pretty predictable for me. I really need to get proper glucose tabs and stuff, and be like a "professional diabetic"... but I'm working on time-in-range, not "did you swab with alcohol" at this point, lol. I just feel good that I'm not shooting through my clothes. Sorry for the day, fellow traveller, hope you get things nailed shortly.
• je42 5mo ago
  I always have a backup, when i travel even a 2 hour drive away from home. I take a spare sensor, spare pump (Omnipod), spare insulin, and an insulin + dextro. On vacation, I take a spare phone, in case my phone that manages pomp and sensor breaks down. It happened already twice on vacation in the past 5 years.
• diob 5mo ago
  I have a fear that my CPAP machine will die one day while I'm away from home, such as vacation overseas or during a business trip. I literally no longer can sleep without it, I have anatomical sleep apnea (perfectly fit), but it's quite severe (79 AHI). I once forgot it on a trip to a different state, and tried to sleep in the hotel but basically just had insomnia, as I could no longer pass out when I woke up from the apneas. Terrifying to think I did so earlier in my life. Anyways, I lucked out as I went to craigslist and found one during that trip the next day. But even if I was home, I'm no longer eligible for a CPAP since my last sleep study was roughly 13 years ago. Apparently they think my anatomy is magically improved since then, aka the US medical system wants their cut of my time / money to keep living. So even my recent new purchases are from folks on craigslist. It's wild they would rather me go through another sleep study when during my initial one they cut it short because I had such severe apnea (of the sort where I could have a heart attack without it). They hooked me up to a machine within around an hr or so. Now that I'm older, the risk is even worse.
  • babar 5mo ago
    If you haven't already, you should try making an appointment with a sleep doctor. Mine was able to write me a new prescription without a new sleep study, just a regular office visit. Make those insurance companies pay for what you are entitled to!
  • m463 5mo ago
    Happened to me once. Water chamber broke in checked luggage. I slept poorly for a few days far from home. Thinking back later: - I wonder if I could have sealed the area where the water chamber goes and done it water-free? - I should have taken 1x extra parts for everything - I have a complete second setup, maybe I should have taken that? thing is, the 100's of times I didn't need to "overthink" things set my "over" and "appropriate" thinking levels and I thought i was ok. as to the sleep study - it is LOTS less invasive nowadays. You probably take a device home with you, strap it to your body while you sleep and return it the next day. None of this "sleep in hospital setting" nonsense.
    • EA-3167 5mo ago
• deleted 5mo ago
  [deleted]
• rimshot 5mo ago
  I've been a T1 for 35 years. I use 20 year old insulin pumps so that I can have more control over them. I'm able to run open source software to talk to the Dexcom and the pump to control the insulin output, and tune it exactly how I want it. I started with OpenAPS, then Loop, then iAPS. I probably owe my life to these projects. The FDA approved stuff is much more of a one-size fits all, and I understand why it needs to be that way. I just wish we had more open pump options in the US.
• findthebug 5mo ago
  stories like this is the only reason why i still on pen. traveling a lot and all i bring with me are 6 pens, 3 pack dexcom, blood strips and a ton of needles. but yeah feel with you!
• beanjuiceII 5mo ago
  I dont know if you are reading this but you should see if your insurance will cover an omnipod. it is a million times better than the insulin pump you are using
• Qdulf 5mo ago
  For anyone planing to go to Nepal with a pump: Beware of the (quarter-hour) time-zones. My wives ypsopump didn't play well with NPT (+5:45) at all. We panicked quite a bit before we finally figured out we just had to set the connected phone to India Standard Time.
  • dghlsakjg 5mo ago
    Excuse my ignorance: why does the pump need to know local time anyway? Or is it just shit design?
• defaultcompany 5mo ago
  Some random thoughts on this situation which I have been in as well. - bring lantus pens - bring a backup pump. If you've been on a pump for more than 5 years you've probably gotten a new pump because the old one went out of warranty coverage. I have 2 old pumps which still work in an emergency (although without closed-loop - they will still do basal and bolus). - regarding being forced to prime 10 units of insulin out of the tandem x2 just to use the existing cartridge when the tube is already full of insulin. This has always annoyed me as well. If you are in a pinch or really don't want to waste insulin what I've done is take the needle part off a two-part syringe (assuming you have that kind) and stick the end of the pump tube (the coupling part of the pump site) into the hole of the syringe and prime directly into it. Then you can put the needle back on the syringe and inject the primed insulin back into your insulin bottle.
  • stuckindoors 5mo ago
    Amen…Bring a lantus pen. Lantus alone is going to keep do a majority of the work from keeping going into DKA. Insulin pumps are going to fail. They are mechanical devices. Batteries fails. The connected phone can fail. At some point in a diabetic lifetime…it is going to break. The entire reason most patients are taught with subcutaneous insulin is at the start is that there is good chance complex tech will break. As healthcare providers we get this - we see these patients on the weekly. As patients you may only get experience it once in your lifetime…. Technology will always break at the most inconvenient time. You need to have a back up plan with your health. SQ insulin is the back up plan.
• UomoNeroNero 5mo ago
  Friend, you’re diabetic. Your survival is ultimately your own responsibility. Prepare yourself for a few hard truths. No one — including nurses and doctors who are not specifically trained in diabetes management — truly knows your situation. I had a TIA. I was barely functioning, hospitalized, semi-conscious. Not a single person in the ER, nor during the entire week I was admitted, stopped to think that maybe I wasn’t mentally fit to manage my own CGM. Always be prepared. I once found myself in what my company had sold to me as a “hotel” in Germany. It was really more of a shack. I was having a severe hypo, glucose at 70 and dropping fast. There was no lobby, everything was closed, emergency services didn’t speak English, and I couldn’t even find a taxi willing to come out there. I ended up licking sugar crumbs and biscuit dust that had accumulated over the years in the pocket of my suitcase. Your CGM can fail. In fact, it will almost certainly fail while you’re on vacation on some Greek island with no signal. You must know how to manage your blood sugar with insulin pens. Even with different insulin types. You need conversion charts. You need the phone number of your diabetes center so you can get proper instructions. You must be able to change an infusion set in the dark, slightly drunk, like Rambo — except this isn’t a movie. You need to remember your insulin-to-carb ratio and be able to estimate the carbohydrates in a dish you’ve never seen before. I’m lucky enough to be able to “feel” my blood sugar. More importantly, I can sense when I’m heading toward a hypo, and I do everything I can to preserve that personal superpower. As we say in Italy, being diabetic is serious business. My colleagues and friends see only the outside. They see a well-managed condition, an HbA1c of 6. They laugh when I tell some of the more extreme stories. But they have no idea — absolutely no idea — how difficult our lives are. Ours, and our families’.
  • UomoNeroNero 5mo ago
    Oh, and one more thing. I always keep a blood glucose meter in my backpack. You know, that medieval-age stuff with the finger-pricker and test strips. (You can buy one for about €10 in pretty much any pharmacy in Europe, but it’s better to already have one with you.) And pen needles, too.
    • UomoNeroNero 5mo ago
      P.S. As a European, I genuinely struggle to understand how you cope with your healthcare situation. In France, in a small mountain village, I walked into a pharmacy and, through a combination of gestures and sketches, managed to buy a box of rapid-acting insulin at full price (around €30–40). The insulin was clearly available. The issue was purely bureaucratic — technically I needed a prescription from a French doctor. But the urgency of the situation, and the fact that I was obviously diabetic, were equally obvious. We certainly have our own problems over here, don't get me wrong. But I don't envy yours.
• venantius 5mo ago
  Hey, this happened to me about two years ago! Forgot I was wearing my pump and walked into the ocean. Oops. I was on a Greek island during Easter weekend - the worst possible time and way to need emergency medical care. One thing I now do is always travel with one of my old insulin pumps. They may be 5, 10, even 15 years old, but they take the same infusion sets and all they need is a fresh AA/AAA battery and they’re as good as new. Thank you to the medical devices industry for making some resilient AF kit.
• mlhpdx 5mo ago
  Traveling without a quick acting pen and a long acting pen would never occur to me. Even if I’m traveling for a weekend I do (and take finger prick strips and tester). It means not having to worry about pump or sensor failures, which for me generally happen during exactly the fun activities I go on vacation to enjoy.
• deleted 5mo ago
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• umvi 5mo ago
  Just use insulin pens or even just vials + syringes to manage your BG? I'm T1D as well with a 5.7 a1c. You don't "need" a pump and in some ways pumps make you ignorant of your own disease, like people who "need" GPS to navigate their own towns.
• Projectiboga 5mo ago
  This is why I was uninterested in joining a clinical trial for one in the 80s. But to travel w/o backup blood sugar testing and spare insulin and needles is suicidal. For any T1D here, walmart has dirt cheap glucose packs in tubs or 8 and bottles of 50 for very cheep.
• codingdave 5mo ago
  > The woman on the other end of the line asked me, "Do you have a plan to continue your insulin pump therapy?" I said, "I guess. I will have to call my doctor and get my prescription for long-acting insulin moved to a pharmacy in Santa Fe." I don't know what she would have done if I'd said "no." Just a PSA for anyone dealing with medical support lines of any kind in the USA. When they ask whether you have a plan, no matter what topic you are talking about, they are not just making small talk. They are at a decision point in their script - a nice little diamond on a flowchart with different paths for "Yes" vs. "No." Your answer will change path of the conversation. The best move is to give a thought out, honest answer to that question.
• sgentle 5mo ago
  Unfortunately this is my broad experience of medical systems across multiple countries and, weirdly, it strikes me as one of the few problems that isn't caused by rent-seeking in the healthcare industry, or at least only very distantly (minus the "don't want to remortgage my house to go to emergency" element, obviously). Medicine has a curious form of parochial paternalism: doctors, endowed with complete responsibility for your body, bodies in general, and anything that might affect a body, will confidently make claims and assumptions far outside their expertise, and completely ignore the factors outside their purview. Their role is to be the calm and reassuring face of medicine, even at the expense of a necessary humility about the complexity of the systems outside their office. The bulk of the actual care is done by various non-doctors with a dizzying and overlapping matrix of responsibilities, all but guaranteeing that important things get dropped or missed. But all of that is meant to be fine, because the doctor is the single responsible person who will catch whatever the patchwork misses. Only they don't, because they're doctors, not social workers, not healthcare administrators; they rarely see the full picture. This leaves only the patient, who, while suffering and with no particular expertise, has to become their own doctor, pharmacist, technician, administrator and patient advocate if they want to receive the best care. Of course, the best care usually isn't necessary for a good outcome, and if you have an uncomplicated problem with a standard solution, chances are the medical system works just fine for you. But when you slip off the beaten path you very quickly realise that the facade has so many cracks that it's as much cracks as facade.
• stanleydupreez 5mo ago
  [flagged]
• decademoon 5mo ago
  One thing I learned when I switched from manual injections to an insulin pump: the pump does NOT eliminate the need to carry injection pens, needles and a glucose meter with me when I leave my house unless I know I can get back quickly in case of an emergency. I always need to think about the worst case scenario, especially when travelling overseas.
• Nk26 5mo ago
  This is a very large fear of mine but we've been lucky to have extra supplies in almost every T1D category. People seem to forget that most diabetic supplies in the US are gated by insurance who make it extremely difficult to create a small stash. We bring extra ( most that i had to cash pay for ) insulin, long acting , CGM's, multiple blood glucose monitors. We also recently were able to bring my sons old X2 with us on vacation. So we have backups for everything. Also use facebook groups if your in a situation like OP is in. I could post on my local T1D group looking for long acting and could get 5-10 offers.
• kraussvonespy 5mo ago
  Today in the US in 2026, if you're blindly trusting fully enshitified corporations to keep you alive, I assure you that you're not going to have to worry about broken insulin pumps for very long.
• jrflowers 5mo ago
  There are several strange things here. > Flagstaff did not have any insulin for me. This seems… impossible. They could be out of a specific SKU of Lantus pen, but that’s an entirely different thing from a pharmacy not having any long- or intermediate-lasting insulin. They probably had Lantus vials, or other glargine biosimilars, or NPH insulin or dozens of other types of insulin. > the Tandem tslim X2 requires the user to "prime" the pump tubing with 10 units of insulin every time the pump shuts down or the cartridge is replaced. This happens with every pump in one way or another to avoid getting air instead of insulin. There is no pump on the market that doesn’t involve wasting insulin somehow (though getting leftover insulin out of Minimed pumps is much easier) > To tell the truth: I do not even know how to use the pen. I have never needed to do this in my life. > I've lived with diabetes for 27 years and I've been on pumps for 25. The pens are just a vial and a syringe combined. If you’ve given yourself injections, using the pen is straightforward. > Foolishly, I did not bring the backup-of-the-backup. I never have! For anyone not familiar with diabetes management, these two sentences are the failure that happened here. Insulin pump failures are very rare, but the only way they can be dangerous is if you choose not to bring your medicine with you. Lantus (the thing OP is prescribed but does not treat as necessary medication) is given to diabetics for this exact situation. The pen is a bit bigger than a Sharpie. One of them can keep you alive for a week or more. There is no valid reason not to keep it with your other insulin. The lesson here has nothing whatsoever to do with insulin pump brands. OP will never get a pump that can’t fail but thankfully “what to do when a pump fails” has been an elegantly solved problem for many, many years.
  • archon 5mo ago
    > To tell the truth: I do not even know how to use the pen. I have never needed to do this in my life. I truly do not understand how one could have T1D for 27 years and still be alive with this attitude. Don't get my wrong, I'm happy she is! And maybe that's just my own limited experience of managing my foster daughter's T1D for the past year talking but... Man, this year has been a rude education in how many ways all of these necessary-for-life pieces of equipment and medications can go wrong and how easy it is to get into a life-threatening situation. Going more than 30 minutes from home without extras of everything (Dexcom, glucometer, fast-acting, long-acting, glucose tabs, glucagon) is completely unthinkable.
• williamDafoe 5mo ago
  Ask us about the 27 phone calls and TEN DAY DELAY AS WE REACHED OUT TO FIVE CLINICS to get a mohs surgery scheduled for my son, 23, in the bay area, with diagnosed and biopsied melanoma. The USA medical system is really fucked up. Finally a Canadian in Vancouver hooked me up with a plastic surgeon while on vacation who agreed to end his vacation early and do the surgery in Campbell, CA ( South San Jose )!
• tom86150 5mo ago
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• dwedge 5mo ago
  It's only tenuously related to TFA but recently I've been trying to move almost all of my recreational internet browsing to the indie web. I've been populating freshrss with the ultimate aim being that I can mostly read everything on airplane mode. Anyway I was reading through the newly published articles on Bear's discover tab and found this article on there with no upvotes. It's the first time I've seen something go from obscure to frontpage HN
• kelnos 5mo ago
  Ooooof. I don't want to be too critical, because I'm not the author, and not in their situation, but two things: 1. Your insurance will pay for an ER visit wherever you are (in the US; the author mentions having a California-based ACA plan). Assuming your plan covers emergency services, they're required to cover ER visits at in-network rates wherever you are in the US, even if the hospital/staff are out-of-network for your plan. I'm not sure if the author is unaware of this, or if the issue is that their insurance will only cover a percentage of emergency care costs in general, and the remaining percentage can of course be a lot of money. I assume it's actually the latter, but I think this is good information for people to have in general. If you have an actual emergency when you're not near home, get yourself to an ER. Which leads me to one caveat: don't take an ambulance if you can help it; so many ambulance companies[0] in the US do not take insurance, or engage in other fucked-up shenanigans that mean you could be on the hook for thousands of dollars for a 10-minute ride to a hospital. 2. I get not wanting to make waves or get angry at a customer service person who you need to be on good terms with for a piece of equipment that literally keeps you alive. But! "I'm not at my home address and won't be until $DATE. I need you to overnight the new pump to a different address: $ADDRESS." If they balk, ask to speak to their supervisor. If they won't do that, hang up and call back; often getting a different person on the phone can do wonders for your success rate. [0] Yes, many ambulance services in the US are run by independent companies that aren't even affiliated with the hospitals they might take you to, instead of being run by a hospital or other local municipal emergency services. When you call 911, you never know who is going to be dispatched to respond to your call.
  • codingdave 5mo ago
    Your insurance will not necessarily pay the full cost of ER visits. Some plans have co-pays in the range of hundreds of dollars. High deductible plans might make you eat the full cost if you have not already had a lot of medical expenses this year. Just having insurance does not mean you won't get destroyed by bills... all it means is there is a max limit on the destruction.
• bibelo 5mo ago
  I stop reading when the first paragraph contains a profanity.
• nelox 5mo ago
  I'm going on vacation. I have a life critical device I depend on for said life. What would happen if said device failed? Like many of the other comments, surely a diabetic would be familiar with the risks? Apparently not.
• p0w3n3d 5mo ago
  I'm really sad to say: insulin is not expensive in any other country except for USA. I don't know what you guys and gals do there in the new continent, but please work out on it a little bit. https://www.rand.org/pubs/articles/2021/the-astronomical-price-of-insulin-hurts-american-families.html https://www.rand.org/pubs/articles/2021/the-astronomical-pri...
• deleted 5mo ago
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• ThePowerOfFuet 5mo ago
  >What it's like to have the machine that keeps you alive die while you're on vacation If the machine literally keeps you alive, why do you not have a backup?
• krater23 5mo ago
  I use contact lenses. Just beleive me, there are days I go out without them just to get used of it in the case I lose them. Everytime I leave my home, I have backup lenses. And not seeing is for me just a inconvenience, not more. When my life would depend on this, I would NEVER accept to only have a complex electronic device keeping me alive when I dont understand it and can't repair it in the dark with my swiss army knife. It's a really honest text, but the anger and helplessness is just self implied. It's crazy how people today are so unable to manage their life without electronics.
• croemer 5mo ago
  Fellow T1D here. The same pump tslim X2 also failed on me 3.5y in, also on holiday (I was in Morocco). I had backup pens with me so no big issue. I've now switched pump to my Ypso mylife with CamAPS FX algorithm. It's so much better than the tandem! Much fewer useless alarms, the algorithm is way better. Downsides are manageable: reservoir is only 160 units (instead of 300) and one needs phone to be always on (good motivation to keep it charged).