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  UomoNeroNero
  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’.
• venantius
  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.
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  diob
  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.
• mlhpdx
  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.
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  bradleyy
  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.
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  antasvara
  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.
• thomascountz
  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.
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  bluesounddirect
  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 .
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  defaultcompany
  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.
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  1123581321
  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.
• Qdulf
  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.
• rimshot
  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.
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  bdcravens
  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.
• lm7272
  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
• beanjuiceII
  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
• anon
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• je42
  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.
• zamadatix
  It is insane how weird and complicated it is to get unscheduled medical care.
• findthebug
  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!
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  Symbiote
  I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.
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  dreamcompiler
  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.
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  tronicdude
  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).
• ewy1
  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.
• nivethan
  This is a terrifying and illuminating read.
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  chemicalsnakes
  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.
• s1artibartfast
  >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.
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  jeffrallen
  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.
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  petesergeant
  > I know that going to an emergency room would have cost me an insane amount of moneyI 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.
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  epolanski
  [flagged]
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  ahoka
  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.
• Group_B
  Not sure why this is got on the front page here. This is a just rant / vent more than anything else.> 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.Hahaha hilarious joke.> I've lived with diabetes for 27 years and I've been on pumps for 25. I have spent a quarter of a century relying on machines to keep me alive. It has never failed on me before.Really feel this hatred is uncalled for if this is the first true failure the author has had.> It's incredible that I've been able to do this, and it's incredible that it never occurred to me to plan for a situation where the entire pump would fucking break.Lesson learned!> If I don't write what I've learned here, one of those hideously irritating diabetics who goes on Reddit and argues about everything from the perspective of Perfect, Unerring Care will send me an email criticizing me. Fuck you, if that's you. If you were even thinking of emailing me to criticize me about what I did, I hope you die. Of diabetes.Gonna send an email after posting this!> It's very difficult to have a normal attitude about a tech company that keeps you alive, but it's even harder to be normal about it when the tech fucking breaks. Even if we lived in a utopia, with universal healthcare, universal pharmacy medication searches, and helpful customer service reps who send backup pumps directly to my location on the backs of swift eagles... even then, I don't think it's possible to live without resentment for the technology keeping you alive.I do not understand this attitude at all. So you go like 25 years without your pump failing and this one failure gives you a complete 180 stance on medical tech? Lucky for you there is always the option to go back on pens! 1000 times less points of failure.I look forward to the future posts on the Dexcom G7. Now that thing is a piece of shit. Especially frustrating when I never had problems with the G6. Dexcom managed to make their product worse and is forcing us all to "upgrade". There's already a class action lawsuit against it. Can't wait to receive my $20 from it in 5 years!