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.
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 .
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 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.
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 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.
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.
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.
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.
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.
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.
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).
"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."
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.)
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.
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 .
also it didn't give here 40 units the pump failed .
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.
I wish you life from diabetes to cancel out her curse
> 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 don’t want to risk writing something I would decide to email later!
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.
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.
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
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 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").
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.
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.
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.
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.
This is a terrifying and illuminating read.
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.)