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What it's like to have your insulin pump die while you're on vacation

46 pointsby speckxlast Thursday at 6:33 PM45 commentsview on HN

Comments

antasvaratoday at 2:28 PM

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.

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bluesounddirecttoday at 1:43 PM

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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1123581321today at 1:17 PM

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.

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lm7272today at 1:41 PM

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

Symbiotetoday at 1:29 PM

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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zamadatixtoday at 2:43 PM

It is insane how weird and complicated it is to get unscheduled medical care.

Group_Btoday at 2:49 PM

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!

tronicdudetoday at 3:07 PM

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).

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chemicalsnakestoday at 2:04 PM

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.

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dreamcompilertoday at 2:19 PM

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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nivethanlast Thursday at 7:42 PM

This is a terrifying and illuminating read.

epolanskitoday at 2:46 PM

Keep in shape and don't overeat!

In my family, where's hard to convince to stop eating too much and moving too little we had 3 cases of diabetes in the last decade.

My girlfriend, which weights 170 pounds, and I just can't get to have a healthier life style has been diagnosed with pre-diabetes and high insuline resistance at 33 only!

I am increasingly looking at severely overweight people the same way I look at drug or alcohol addicts. It is an addiction, and it's super unhealthy yet some how socially accepted?

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jeffrallentoday at 2:56 PM

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.

petesergeanttoday at 2:47 PM

> 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.

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ahokatoday at 1:12 PM

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.

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