What it's like to have your insulin pump die while you're on vacation
blog.lauramichet.com55 points by speckx 3 days ago
55 points by speckx 3 days 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.
> 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.
the correct answer here is that they are all accountable. there is not some fixed quantity of blame to divvy up: each malfunctioning leg is responsible for the outcome.
They all contribute but they can’t all have the same degree of accountability.
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 at a Fedex or UPS location. Their staff should be trained to ask “are you traveling or otherwise away from your home address?” And finally they should train staff on follow-up questions for a patient’s plan and confirm the patient has enough insulin on-hand to cover executing the plan.
Why is any of that their responsibility? Their staff did ask if they would be fine without the new pump and op said yes. They were fine. They could have gone to a hospital. They could have gone to Walmart and bought some insulin syringes for their supply
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 .
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.
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.
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.
For my wife, when on lantus and novolog ( no pump ) the overnights were always high blood sugars . The pumps definitely help , but in retrospect she also stopped eating gluten around the same time. The no gluten diet helped a lot .
Side bar having been around the dexcom for 10 years now . The old/original audible alarms were easy to understand. Low crescendo for going low , low repeats for low alarm and the reverse for high events. With the x2 and g6 i literally have no idea what the beeps mean anymore. This alarm fatigue is bad and i wonder if this contributes to the authors issue too. Was there some warning she missed?
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.
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 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.
Many people ignore that there is a good chance they will end their life infirm or disabled and are therefore happy to shit on people with chronic (or even acute!) diseases and disabilities like that's a group of aliens that they will never belong to.
No worries though. As we say in Greek, "όλα εδώ πληρώνονται". Loosely translated, what goes around, comes around.
Sounds familiar. I was often told "just use your inhaler, you'll be fine!". How I wish it were that simple.
Sounds like the author is talking exactly about them, a diabetic who could offer some useful feedback.
And sure, I guess you can wish painful death on anyone who shares your form of asthma and has suggestions, but it definitely says a lot more about you than them.
> 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?
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.
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. 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.
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
It is insane how weird and complicated it is to get unscheduled medical care.
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.
I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.
Fortunately, having a discussion does not appear to be the goal of this blog post. The author is relating a story including their feelings on the matter. It’s not really about us, unless you’re working for a pump company or could possibly address the structural issues that have led to this situation.
Honestly, I found it illuminating. I don’t depend on a machine to keep me alive directly, but it made me think about how much I would resent dangling at the end of a line held by a company that would cut me off if investors thought it would make them slightly richer. One that cuts every corner they can, and doesn’t actually care about you. I imagine that resentment over years, a quarter century of things getting worse on the “caring whether you live or die” front, might lead to the feelings the author expressed.
It’s pretty clear that discussion is not desired, unless you have the cure for type 1 diabetes in hand before you send the first reply.
Retired manager, been in my share of tense meetings.
I appreciate it when someone recognizes that they're struggling with conflict and emotion, and lets me know that they know this. It's better to acknowledge the emotion and put it on the table as its own valid topic of discussion, than to tiptoe around it or try the "I'm sensing that you're dealing with some internal conflict" approach that risks embarrassing them or worsening it.
The choice is whether to acknowledge the emotion, not whether to have it.
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 off with all your money, etc.
This isn't, like, TikTok. It's a firm that provides a transformative improvement in quality of life to diabetics.
(Not above criticism, of course, but weird to lump them together as insidious "tech companies").
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.
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.
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.
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”.
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 also consider it normal to be on the receiving end of such language if my own work resulted in such a situation. That would cause me to pause and reflect.
The intensity of feedback is information. If everything is bland, it's harder to know how important something is or not. Logic has a limit because you don't have all the parameters from the other side.
It works the other way around. The overuse of superlatives and day-to-day outrage is equally unproductive.
This is not the case here, IMO.
It's more than alright to be outraged, that's very different than it being alright to wish harm. That shouldn't negate anything else said in the conversation, but it's also just as much of the conversation to call it out.
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.
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.
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.
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.
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.
>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.
This is a terrifying and illuminating read.
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).
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
> 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.
> 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.
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.
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.
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.
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.
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).
The author is a woman. She does call a support line during the course of all of this. The support line was fairly unhelpful.
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
"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
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.)
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.
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.
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?
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
Your comment is off-topic (and seemly very private). I think you may have commented on the wrong post.
Great, I’ll go back in time and talk to my fetus and tell it to be more careful
This is type one diabetes you illiterate sack of shit
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!