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Having your insulin pump die while you're on vacation

blog.lauramichet.com

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Re: Having your insulin pump die while you're on vacation

#161

Post by chemicalsnakes »

swiftcoder wrote: post #22
Symbiote wrote: post #8

I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.

It honestly might be helpful if we framed more conversations that way, when talking about the creeping dependencies on tech firms that fill our lives. Those of us without a medical dependency are lucky that catching one of the many tech failures modes won't actually kill us - but you'll still want to throttle more than a few folks if you ever have to recover from your Google/Apple ID getting banned, or PayPal running…

“Creeping” from what? More primitive medical technology that saved fewer lives?

Re: Having your insulin pump die while you're on vacation

#162

Post by kelnos »

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.

Re: Having your insulin pump die while you're on vacation

#163

Post by kelnos »

antasvara wrote: post #28

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; t…

The thing that frustrated me most reading this was #1. And not even that the support person didn't suggest sending the new pump elsewhere (though they should have), but that the author didn't simply say, "I'm not home and need you to send it to a different address". I get the general point that she didn't want to make waves with someone who is going to be helping her deal with a condition that is life-threatening, but that simple sentence is not "waves", it's just... normal, reasonable communication.

This would have solved the entire problem, right there, immediately. The author would have been doing the annoying cartridge swap until the next morning, and then would have had a new pump waiting at their hotel. No more stress, no need for a blog post longer than, "my insulin pump was on its last legs while I was on vacation, but the company got me a new one in less than 24 hours and everything was fine and not particularly stressful at all, whew!"

I agree that #2 is reasonable. The insulin pump manufacturer isn't going to put a doctor on the phone for any random call to their customer service line. I do think they should have doctors on staff who can be escalated to, though, if needed.

#3 I'm not sure about. When I send a message to my doctors, the messaging system is very clear to warn me with every message I send that it may be several business days before they respond. If the messaging system in question has that same warning, that's on the author again, even if they were lulled into a false sense of on-call levels of response times based on past experience.

#4 doesn't feel reasonable to me at all. Insulin should not be gated by a prescription. I'm fine-ish with the idea that insulin can be available through a prescription (because then you'll likely get a better deal on it when your insurance company covers it). Downthread it seems that in the US you can walk into any pharmacy or Walmart and buy some forms of insulin without a prescription, for a fairly reasonable price. I guess the author didn't know about this.

#5 is not reasonable in the least. Any pharmacy employee should be able to search for the closest branch with insulin, regardless of distance, or be able to say "give me the closest insulin to these coordinates" or something like that. That's just absolutely terrible UX in whoever specced out and implemented that search function.

Re: Having your insulin pump die while you're on vacation

#166

Post by kelnos »

throwaway173738 wrote: post #40
antasvara wrote: post #28

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; t…

The pump manufacturer is at fault a few different ways. They have a responsibility to make pumps that don’t break, and they should probably issue a recall. They shouldn’t rely on the availability of a product they don’t supply as a backup unless they can guarantee somehow that the patient always has access. Their staff should ask where you want the thing shipped to and include options like receiving the replacement a…

Hah, "make pumps that don't break". Well, when you figure out how to keep entropy at bay, please tell us, because that would be a cool trick. Pumps will break. It's genuinely amazing that the author went twenty-five years before experiencing her first broken pump.

The author screwed up. "I'm not at home and need you to send the new pump to my hotel." Problem solved. Yes, the customer service rep should have pro-actively offered to do that, but c'mon. That is a super basic thing to request, and people need to advocate for themselves. And that's not even "advocacy" in any difficult sense; it's a basic request that the company should have had no problem complying with. If they did refuse to send it to where the author was, then that would be grounds for an angry blog post.

On top of that, the author, clearly a functioning adult human, seems to have never had the imagination to ask herself, "what happens if my pump breaks; what is my backup plan?" Hell, that's an important question to have an answer for when you're at home, not just when away on a trip. Based on her words in this blog post, she clearly absolutely knows that this device is critical for maintaining her life. Devices break sometimes. You need a backup. Preferably two backups, for something as critical as this. This is just basic common sense.

Re: Having your insulin pump die while you're on vacation

#167

Post by kelnos »

indrora wrote: post #26
1123581321 wrote: post #4

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.

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 l…

I get that there are lots of people out there who love to play armchair health advisor and have no idea what they're talking about.

But I agree with the GP that this is just strange. I'm not diabetic, so I don't have anything to say about management of the condition itself, but two things were absolutely nuts to me:

1. The author didn't ask for the pump to be shipped to her hotel. She gave an explanation for why she didn't ask for this, but that explanation doesn't make sense. And if she had asked for that, the problem would have been solved by the next day, with minimal fuss or extra stress.

2. The author seems absolutely flabbergasted and in awe at the idea that a mechanical device can break. Yes, I get that she used insulin pumps for 25 years without a failure, but c'mon. Everything and anything can break, even a medical-grade device. Based on her description of how many extra cartridges, syringes, insulin, etc. she brought with her tells us that she does understand the concept that things break and unexpected things happen. Why this huge blind spot around the possibility that the pump (or the CGM) could break too? How could she never ask herself the question, "if my insulin pump breaks when I'm not at home, what will I do for a backup?"

Neither of these points has anything to do with medical knowledge or understanding of how any particular medical condition is managed. They just seem like simple common sense to me, as a fellow adult human who lives on the same planet.

From the author's "here's what I'll do next time" section, it seems she's learned the right lesson and will bring a backup for her entire pump/monitor setup on future trips. Great! I'm glad. But it is absolutely bizarre to me that this isn't just SOP for anyone who relies on any piece of technology for anything, even for things that aren't life-threatening.

Re: Having your insulin pump die while you're on vacation

#168

Post by kelnos »

BiteCode_dev wrote: post #19
Symbiote wrote: post #8

I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.

First, let's acknowledge that when the actions of some people lead to endangering a human life, it's natural to be angry about it. Personally, when anger is justified, I feel more comfortable with people who clearly and openly express it. I find them more reliable, more honest, and usually better people to be around. By my standards, I'd even consider the style very mild, considering a life is on the line. I would al…

> First, let's acknowledge that when the actions of some people lead to endangering a human life, it's natural to be angry about it.

The thing that's really bugging me is that this is not what happened at all!

"I'm not at home, please send the new pump to my hotel."

That's it! That solves the entire problem in 5 seconds plus the time to tell the customer service rep the hotel's address and verify it's correct. Yeah, there were some other structural problems that led to other dumb things, but none of that would have even come up if she'd done the blindingly obvious thing and had the life-saving, 24/7-required device shipped to her actual location. If anyone endangered her life, it was her, through her own actions.

She really crossed the line for me by wishing harm on the people who designed and built her insulin pump. What the hell? They've done nothing wrong. Yes, her pump was beginning to fail, but 1) it was still limping along with a workaround and she wasn't in immediate danger (and if it did fully fail, she said she was within an hour's drive of an ER at all times, which she felt was fine), and 2) she had never had a pump problem in twenty-five years, which is an amazing testament to the reliability of these devices. The people who work on these things deserve a freakin' medal, not bullshit like "the people who design, sell, and service these machines are both keeping me alive and also my mortal enemies".

Re: Having your insulin pump die while you're on vacation

#169

Post by kelnos »

oompydoompy74 wrote: post #15
Symbiote wrote: post #8

I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.

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.

> Not every blog is written to be discussed on Hacker News.

It may not be written with that intent, but if you publish something publicly on the internet, you run the risk of some people, somewhere, discussing what you wrote.

That doesn't mean you have to care what those people have to say. Frankly, she shouldn't care what we have to say.

But if you put something out there, and someone reads it, they're well within their rights to have whatever reaction they want to it.

Re: "being nice for the sake of niceties", I agree with you, but her attitude toward the people who work for the pump manufacturer (who did nothing wrong, and in aggregate built life-saving devices so reliable that it took a quarter of a century before her first problem came up) is just not ok. "Beyond the pale" is a phrase that comes to mine, and I don't think I'm being hyperbolic here.

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