The Last of the Iron Lungs | Hacker News Reader

The Last of the Iron Lungs

gizmodo.com

194 pointsohjeez65 comments

"I realized what each of these iron lung users have in common are the aid of generous, mechanically skilled friends and family. And that’s probably the main reason they’ve been able to live long and full lives, despite the hardships and anxieties of depending on aging machinery to survive."

Much thanks to that network of friends and mechanically inclined people. It would be great if we could archive their knowledge. I think it would make great documentary material to follow around these tinkerers.

On the contrary, it's becoming increasingly illegal.

The most obvious case currently are John Deere tractors that cannot be repaired or modified by their """owners""" under the headline of the DMCA, but in the future, we're going to see the same for medical devices.

There was an excellent talk about this by Karen Sandler at freenode Live this year regarding her own pacemaker.

There is similar problems with the software that runs pacemakers and other such devices, in which the source is not made available. The protection of users against themselves is an easy example of the intrusion of technological rationality and production for the sake of production in capitalism in which the totality of experience, even life itself for such people, is administered living.

> In 2004, Respironics gave iron lung users three options: transition to another ventilator device, keep using the iron lung but know that Respironics may not be able to repair the device, or accept full ownership and responsibility of the iron lung and find someone else to repair it.

I wonder what the alternative ventilator device is. Iron lungs are not convenient or cheap by any measure. I am sure if they were any better options all of them would have switched without needing the ultimatum. What exactly was the company suggesting they do instead?

The article makes it clear that positive pressure ventilators can cause problems, but I found this:

https://amp.reddit.com/r/explainlikeimfive/comments/3hiwb9/e...

https://en.m.wikipedia.org/wiki/Medical_ventilator

Also, it is Warms Springs, GA, not Warm Spring.

Edit: I don't have experience with ventilators, but have used a nebulizer and a positive pressure lung clearance device. One of the problems is that they need to be sterilized and if they start growing stuff, you are basically injecting infectious material directly into the lungs for someone who already gets lung infections easily. This is a potentially deadly situation.

Non-amp link for the lazy: https://www.reddit.com/r/explainlikeimfive/comments/3hiwb9/e...

Ironic: I typoed my criticism of their typo.

Sorry, Warm Springs, GA.

Exactly, I wonder why one wouldn't transition to a modern ventilator. I wonder what the driving factors for staying with the Iron Lung are.

It's explained in the article; not as effective, high(er) risk of infection.

This story reminded me of a closing chapter of the discovery of Insulin which reports one of the first crop of patients still going when the book on Banting and Best was published. As said of some of the people in this story, nobody expected them to survive. Unlike This story, the insulin story had a good ending. This one, is about the long tail of health interventions when the eyeball moves on, and you're left on the wrong side of a legacy investment. It broke my heart that the patient is hoarding their last fabric/rubber collars, praying she dies before they do because she can't replace them. If they go, she dies because of them.

I actually hope that as a result of the article someone who works with similar materials is able to get in touch with her and possibly fabricate replacements - ideally a hobbyist who might be willing to do it for the cost of materials. It's not like the actual technology for making them is lost, it's that it's not commercially viable to manufacture them in more than single-digit quantities.

Why should it be a handout?

Phillips got paid nicely for those devices, they should just as well support them. Here is the job for the regulator. And a lesson to the future about the risks of privatization – never let a company have a carrot without the regulator having an effective whip.

In this case the woman in question could quite literally fight that until she was blue in the face and likely die doing so. The responses would range from foot-dragging (if she dies while waiting, the problem's gone away) to offering newer alternatives such as the positive-pressure pumps discussed in the article. Sure those have problems of their own (sanitation, lung damage, infection) but they're a commercially-available alternative.

There's a certain element of "arguing right-of-way" here, and the regulators that you reference are unlikely (these days unlikely in the extreme) to do enough to help her. In particular they're unlikely to do enough on a short enough time period to make a difference.

I wonder how hard it would be to make CAD models of the parts for these machines, to allow them to be made on a CNC mill or the like. They're not particularly complicated tech but they have to be extremely reliable.

Not very, I do it all day. As with anything its all about justifying the time and cost. If I were to do such a thing I would rather put the weeks or months of effort toward designing a new, better device with the benefit of what we know now, not copying what came before.

And that new devices would break in new ways. Good thing about old devices, is that we gathered enough knowledge to know how to fix them.

Considering the amount of iron lunges still in use, it would probably be more cost effective to keep fixing the ones already in use, until all the current patients die.

Physically making a CAD model would be easy, yes. The "hard" part I was considering was the need to get spare parts to make the models from, as if the machine is in use it's a very bad idea to take it apart unnecessarily. And most of the surviving machines are in use. So measuring the old parts would be a bit of a challenge.

Also the new, "better" device is a cuirass negative pressure ventillator, but those apparently have the disadvantage of being far less comfortable for long-term use than an iron lung (though much more portable).

TI(finally)L what an iron lung actually does. (tl;dr it's a ventilator, a chamber that lowers in pressure, causing the lungs of the person inside to expand and contract.)

I never understood why they went out of fashion. They seem far superior to positive pressure ventilators in terms of patient comfort and risk of complications.

> I never understood why they went out of fashion.

They are very large, very heavy, and completely obstruct physical access to the patient, and the patient's access to anything outside the lung. All this doesn't make them useless, or even obsolete, but it seems obvious why something more convenient may be desired.

If it's a matter of life or death why didn't they have some sort of battery backup. It shouldn't need that much power. Or even additional generator.

As well as having moden version as a backup would be viable option. Article seems to make it more dramatic than it should be.

Judging from the photos, I'm not sure how well off these patients are. Bargaining from $25k to $8k was impressive but if you need to bargain that hard for a lift machine, how much is it to have a battery backup? and how difficult is it to have a proper hook up? or find someone who can do it properly?

Seems crazy that some kind of third party couldn't make replacement parts for these; march of dimes still raises money, so there's plenty of money available to fund a small prototyping shop to do this, or it could be a charity effort.

The article indicates there are only three remaining in use, and the person featured in the article seems entirely able to have it maintained as it uses generally available (or readily manufacturable) parts.

This isn't a "these people have a problem to fix" article. It's a "these people are interesting" one.

The neck gasket seems like the biggest issue; hard to repair, critical to the functionality and it sounds like it was designed originally as a perishable part. One of the women is carefully nursing only two spares she bought out of 10 that the company had when she used to replace them every few months.

I'm 46 now, and I remember charity appeals for the Iron Lung Association when I was a kid. These were fronted by Patrick Moore, who people will most probably remember from The Sky at Night astronomy program.

Two years before I was born there were 4000+ cases of children with polio in the area near where my parents lived. By the time I was born polio was basically gone due to the vaccine being introduced. People who don't vaccinate their children should visit one of these folks.

People who don't vaccinate their children should get their children taken away from them. Not vaccinating does not only affect your child but everyone around them. It's a risk to public health.

> People who don't vaccinate their children should get their children taken away from them.

No, their children should be vaccinated by temporarily assuming control and returning them after that's done. To take children away from their parents permanently is cruel, both to the children and to the parents if the only thing wrong is that they do not vaccinate their children.

Your solution is excessive and does a lot of harm where none is needed.

Even on a relative scale your solution does harm: assume that if a parent would not vaccinate their children the harm is basically the chance that they would contract some disease versus the immediate and real harm that you are proposing, the latter being in most cases clearly much larger than the former.

I am absolutely 100% pro-vaccination. Have had both my children vaccinated.

That said I have seen firsthand how the exact attitude you express drives people into the other camp. You cannot go around casually suggesting taking people's children away. We must encourage dialog and facts. We must engage with people on a basis of respect - even if it is a combatative respect. High handedness and vocal repression do not work. If you believe legislative enforcement is the way to go then you can advocate for that. But don't start bandying about speculative punishments.

i myself would get vaccinated, but people who don't vaccinate are mostly not vaccinating for much less severe diseases. we dont vaccinate for polio anymore.

I'm curious to how you feel about illegal immigration. because i find this interesting duality where people who think 'vacers' should have their children taken away from them are also ok with illegal immigration. which is a bit ironic, considering that illegal immigrants outnumber 'vacers' by a large amount, and they are not vaccinated.

https://en.wikipedia.org/wiki/Whataboutism

In fact, we still do vaccinate for polio in the united states. The CDC recommends all newborn be vaccinated in the first two years of life.

you are right, I think I confused it with another vaccination, maybe small pox

Lillard is heartbroken when she meets anti-vaccine activists. “Of course, I’m concerned about any place where there’s no vaccine,” she said. “I think it’s criminal that they don’t have it for other people and I would just do anything to prevent somebody from having to go through what I have. I mean, my mother, if she had the vaccine available, I would have had it in a heartbeat.”

I am amazed by the risk assessment of others when the consequences are beyond painful.

I realize you maybe didn't mean it this way, but anti-anti-vaxxer is one of the most offtopic directions a thread like this could go.

Predictable, generic tangents are the information death of HN discussion. I almost wrote 'heat death' but I suppose heat is one thing they don't lack. Such things overwhelm the intellectually curious things HN exists for, and this article is quite interesting.

No, I didn’t mean to take it in an anti-intellectual direction, but the whole article is an ode to vaccination and the danger when everyone else has gotten the vaccine and you didn’t using folks that didn’t have the opportunity to be vaccinated and now live on a thread neglected by those who still should care. This isn’t an engineering article, it’s a warning. I’m not sure the put down response was warranted.

He wrote "anti-anti-vaxer". IE turning it into a flamefest against anti-vax fraudsters.

I know an anti-VAXer who went to DECUS and announced "If you're not playing with 36 bits, you're not playing with a full DEC!" Those PDP-10ers really know how to piss off the VAXers.

But as dang points out, this predictable, generic tangent is pointless now that the world has moved on to 64 bits.

> the whole article is an ode to vaccination and the danger

I disagree. The interesting part is the iron lungs and the people.

That's not as subjective as it sounds, if you define 'interesting' to include 'not having been seen a whole lot already'.

It actually isn't (off topic) , since it's a key theme of the article.

That's a fair point, but in HN's context it's secondary. What's primary is to avoid reproducing the same thing for the thousandth time, which is what happens with generic discussions. Those are not interesting. Only what is unpredictable is interesting.

In other words, diffs are what's interesting on HN and you can measure the site's quality by how many of them you can find here at any moment.

It's really true that, as someone in my 20's, polio really did seem like a thing of the past before reading this. While I knew what an iron lung was (always disliking the name, though), I had no idea there were still people using them.

The most striking thing is how early in life these people were affected, while I feel like I've only just begun to experience life. Really makes me appreciate all the work that went into the vaccines and public health to make a disease that was so terrifying only a generation ago, virtually non-existent today. (And really hate that the anti-vaxers, who benefited from it, are working to undo such a great achievement)

Here's the thing about the anti-vax movement: even in the outside chance that vaccines do in fact cause autism, a slight increase in the autism rate is worth eliminating polio for.

The study was faked, removed from the journal and the "doctor" lost his licence because of his shit.

It's one damn google search away on a shitload of multiple, reliable sources.

It's sometimes even rational for parents not to vaccinate their children. There are (very rare) side-effects, even up to death, for some vaccinations, and considering that everyone else vaccinates and thus the chance of getting infected and having a bad outcome is even lower than the rare incidence of vaccination side effects.

Of course, that only applies up to a certain point, where enough parents opt out to make vaccination individually the optimal choice. And of course, it's the right thing not to endanger the rest of the population.

That kind of game theory doesn't work because you'll never get close to 100% vaccination coverage so long as there are infants in the world who are too young to take the vaccine and adults who think the diligence of others will keep themselves covered.

Herd immunity kicks in at well below 100% vaccination coverage, and that is good news for those who really can't vaccinate.

Got any sources to back that up? 1% of an entire population is still a massive number of people. Or to put things another way: it's pretty easy to interact with 100 people each day so even just 1% of the population means you will bump into someone who isn't immunised during the course of your day.

There's some side-effects, even up to death, to preventable diseases like polio, whooping cough, measles etc too; I'd say it's a "greater good" kinda thing, small chance of complications if you take the vaccine, big chance of debilitating diseases for your child and people around them if you don't.

My point was, that in a situation with "herd immunity" even the unvaccinated have close to zero chance of infection.

Without herd immunity, benefits of vaccination strictly dominate, even if you just consider the individual.

But then again, since every medicine has side effects, I hope these parents have the same reasoning towards all of them, not only when it's "convenient" (considering the abysmally low side effects, I can't even consider vaccines that risky in the first place).

I had hoped I made it clear enough that there is a rational case on the scale of an individual and a rational/moral case on the scale of society.

My sister is one of those people. She got polio in the 1950s, when she was 5 years old. Fortunately it was a mild case, and she was cured with physical therapy. But it always made me sensitive to anything related to polio.

I wonder, if your parents didn't have you vaccinated and you contracted polio, could you sue them for negligence and loss of function? Can an 8 year old consent to getting polio?

To what end? What could that possibly achieve? If it might make other children safer, perhaps? But I'm afraid that the kind of folks who make choices like that wouldn't make even a rational choice in their own favor to avoid the consequence.

It’s how change like this get done in the USA. Other countries legislate before lawsuits - tobacco is a good example.

Probably not, that would be a government / legal issue. If you're in the US, you're fucked because there's enough people that don't want the GUBERMENT to inject MERCURY in our kids that gives them AUTISM.

Mocking people like that makes them look more reasonable. Please don't.

"Negative pressure"? Ughhh!

Negative pressure is a common term when referring to differential pressure. The place I most commonly see it is for isolating rooms with positive[1] or negative[2] pressure relative to their surroundings.

[1] https://en.wikipedia.org/wiki/Positive_pressure

[2] https://en.wikipedia.org/wiki/Negative_room_pressure

"Pressure" in common usage typically means "gauge pressure", which is zero-referenced to ambient air pressure.

Wow, very, very sad. Yet, we're programmed to cling to life.

This is however like being sentenced to death, just not knowing when the jail door will open. (yeah, I know we all will die, minus a few SV billionaires :))

Reminds me that they are problems and then they are problems in life.

I am actually impressed by the resiliency and positive outlook of the people in the article, at least relative to what I initially expected.

Take the woman who offered the reporter an inside tour of her fragile iron lung, and finds someone to fix it when it breaks down, even under the specter of death. That's amazingly independent and optimistic.

She isn't just clinging to life. She's embracing it, even with it's unfairness and misfortune. May I be so strong a person.

You're looking at the survivors who had the resiliency and positive outlook. There could've been many many more who didn't and died in part from lack of that resiliency.

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