A half-century old machine that forces her to breathe.
November 20, 2017 11:13 PM   Subscribe

The Last of the Iron Lungs "In 2013, the Post-Polio Health International (PPHI) organizations estimated that there were six to eight iron lung users in the United States. Now, PPHI executive director Brian Tiburzi says he doesn’t know anyone alive still using the negative-pressure ventilators. This fall, I met three polio survivors who depend on iron lungs. They are among the last few, possibly the last three."
posted by rhizome (34 comments total) 36 users marked this as a favorite
God bless Salk and Sabin.
posted by Homo neanderthalensis at 11:43 PM on November 20, 2017 [25 favorites]

Whoops, meant to include: Previously, and mentioned in the story.
posted by rhizome at 11:59 PM on November 20, 2017

“The only noise that you can make when you can’t breathe is clicking your tongue. And that whole dark room just sounded like a big room full of chickens just cluck-cluck-clucking. All the nurses were saying, ‘Just a second, you’ll be breathing in just a second.’”


Speaking of iron lungs, I've wondered if there wouldn't still be uses for them. For premature infants who spend months on a positive-pressure ventilator to stay alive? Which can be a race hoping to grow new lung tissue faster then the ventilator burns it out.

Here's one thing, there's been some study of continuous negative pressure, versus variable in an iron lung. Specifically there was a Southall study in the UK that blew up into an investigation of whether it harmed children (no, it appears) and whether informed consent had been obtained (whatever the process, some parents apparently ended up not aware).
posted by away for regrooving at 12:58 AM on November 21, 2017 [2 favorites]

This was fascinating!
posted by Trivia Newton John at 4:51 AM on November 21, 2017 [1 favorite]

Speaking of iron lungs, I've wondered if there wouldn't still be uses for them.

There is actually a modern version available; the cuirass ventilator. Instead of the entire body it just encloses the chest and takes its name from a similar appearing piece of armor. It can be useful but is often difficult to set up properly and obviously limits access to the patient which is a big part of why it is not used in acute respiratory failure in the ICU. For long term ventilation a positive pressure ventilator and tracheostomy is still the norm, but a cuirass is an option, especially for people who only need assistance breathing intermittently, such as while sleeping.
posted by TedW at 4:54 AM on November 21, 2017 [3 favorites]

My father died of complications from post-polio syndrome. He had spent a very brief time in an iron lung as a boy. He struggled on a BiPap in the last years of his life, and it was heartbreaking to watch. I think of him every time I hear someone railing against vaccines. And not in a complimentary way, either.
posted by frumiousb at 6:00 AM on November 21, 2017 [13 favorites]

I was pretty amazed to learn that anyone was still using an iron lung. I remember my parents being so thankful for the polio vaccine, getting the vaccine on a sugar cube was a Big Deal.

I've stopped thinking of vaccines as the Right Thing To Do, and now think of them as something to celebrate and be incredibly grateful for. We have the opportunity to eradicate polio so people like frumiousb's Dad don't have to suffer. And my stepdad, who had polio as a young man, and had post-polio syndrome late in life.
posted by theora55 at 6:17 AM on November 21, 2017 [8 favorites]

I was surprised when I found out that actually, lots and lots of people got polio, but most are asymptomatic, and almost all the symptoms are mild flu-like symptoms -- meningitis and paralysis are relatively rare. This makes more sense than "very few people get polio, but then they all nearly die", but I hadn't known.
posted by jeather at 7:16 AM on November 21, 2017 [2 favorites]

I think of him every time I hear someone railing against vaccines. And not in a complimentary way, either.

Preach. I wish I could have met my great-uncle, that I've mentioned here before. My kids get all their vaccines and I suffer no fools and give no quarter when someone floats the idea that not vaccinating is somehow a viable alternative. I encourage you all to do the same.
posted by RolandOfEld at 7:17 AM on November 21, 2017 [4 favorites]

There is actually a modern version available; the cuirass ventilator.

Holy crap, is that what Immortan Joe from the latest Mad Max movie is wearing??? It has the mouthpiece and leather pump bag to go with the plastic chest pieces. Dang, what a neat easter egg thing to kinda sorta get but not really.

posted by RolandOfEld at 7:32 AM on November 21, 2017 [4 favorites]

I've always been fascinated by iron lungs and the people who use them. I remember asking my mom as a kid if anyone still uses them and I think she said probably no, not anybody in the US. I'm going to send this to her right now!

So the reason someone today would use a iron lung, instead of positive pressure ventilation or a curiass ventilator, is the ability to use it part time or the ability to maintain more independence? Or personal preference? Or cost? It feels like such an obvious question, so I'm sure all these people have been asked that before, but I didn't see very much about it in the article. I did notice that Lillard said the positive pressure caused damage to her lungs and she used the iron lung as a way to recharge- but she also says that if the power would go out while she's sleeping, or if she runs out of neck-seal collars, she would die! I know things like this can be very personal, and a change that to me seems like it could be an improvement in quality of life could be the opposite, so I wouldn't want to force it on anyone. But it would be nice if these people had a backup option on hand beyond finding a mechanic.
posted by Secretariat at 8:50 AM on November 21, 2017

Until today, I thought that if you needed an iron lung, you were going to be inside it 24/7, but this seems to apply only to some patients. Still, what a wonderful and terrible legacy of a horrible disease. Bless the mechanics and the tinkerers who keep these going, and fuck Phillips Respironics for slacking off.
posted by maudlin at 9:03 AM on November 21, 2017 [2 favorites]

maudlin: "fuck Phillips Respironics for slacking off."

This is the sort of banal evil that makes me want to punch someone. Phillips Respironics has 4900 employees generating over a billion dollars in annual revenue. You'd think they could assign a couple mechanics part time to fab parts and engineer new components for these devices. They could cynically use it as advertising copy and their people might learn something that would help out their core business. My tiny union local spends more money helping out our community than these jerks on keeping these people alive. Heck I bet if the company provided organizational and logistic support (IE: access to shops and suppliers) they'd find a lot of their technical and support people would volunteer their time.
posted by Mitheral at 9:30 AM on November 21, 2017 [6 favorites]

One wonders if they're even willing to provide the designs and specifications. Surely the least they could do would be something like that: provide whatever materials you'd need to hand to a fabricator to build the part correctly. Maybe even assign someone to work up some CAD files where appropriate.
posted by snuffleupagus at 9:53 AM on November 21, 2017 [1 favorite]

My father came back from WW II in 1945. He contracted bulbar polio in mid 1946 and was in an iron lung for six weeks before he died. I was three and mom was eight months pregnant with my brother. So I got to know him for a year and my brother not at all. When the vaccine showed up a few years later, we all rushed to get it.
posted by MovableBookLady at 10:15 AM on November 21, 2017 [17 favorites]

Secretariat, the reason negative pressure ventilation is desirable is that it more closely approximates the physiology of natural breathing. Normally when you breathe in your diaphragm flattens out and your ribs swing out like bucket handles, increasing the volume of your thorax and sucking in air; exhalation is a passive process where the natural recoil of your chest wall pushes out the air. Our bodies have evolved such that this mechanism allows for the best matching of blood flow to the areas with the most ventilation, keeps airways open during exhalation, and is very gentle to the delicate alveoli where gas exchange takes place. Most mechanical ventilation uses positive pressure which reverses the normal physiologic mechanism and causes potential problems like ventilation-perfusion mismatch or barotrauma. Unfortunately cuirass ventilators are hard to set up and maintain compared to iron lungs (which are amazingly simple; I took care of a patient in one as an intern in 1990 and got to know it pretty well) and do not work in patients with physical deformities such as scoliosis.

I am puzzled as to why Philips Respironics won’t sell the first lady any more collars? Who are they saving those last ten for? They are actually pretty simple, sort of like an iris diaphragm made of fabric. I bet one of her mechanically skilled friends could make or refurbish one.

As a footnote I like to mention whenever appropriate that Salk refused to patent the polio vaccine. Imagine that today.
posted by TedW at 10:46 AM on November 21, 2017 [20 favorites]

Hi everybody, it's your friendly neighborhood ventilator-dependent quadriplegic here again to recommend the documentary A Paralyzing Fear: The Story of Polio in America, to get a better sense of the zeitgeist around polio before the development of the vaccine. Netflix no longer seems to have it, so try inquiring at your library. A Paralyzing Fear also clearly lays out the economic realities of polio, showing how once the vaccine was developed, donations dried up and no one wanted to pay for the care of the long-term survivors or the maintenance of their specialized equipment. How quickly we forget the lessons of the past.
posted by Soliloquy at 10:50 AM on November 21, 2017 [36 favorites]

Soliloquy, I love it every single time you introduce yourself that way. Makes me sit up and take notice, knowing that you're about to say super-smart stuff I hadn't even thought to think about yet. "Yes! Thank you!" I think every time, so yes! Thank you!
posted by lauranesson at 11:23 AM on November 21, 2017 [2 favorites]

My uncle had polio as a toddler. He was lucky enough that it didn't affect his breathing, but he was in the hospital for months. My mother still shudders when she talks about how he would scream during his aftercare at home (the Sister Kenny treatment with the hot towels and stretching exercises). He recovered, but has walked with a limp most of his life. Post-polio syndrome is kind of kicking his ass right now - well, more like his spine.
posted by The Underpants Monster at 12:11 PM on November 21, 2017

My mother had polio in 1948, when she was eight years old. Last year her COPD progressed to where she needed supplemental oxygen. We obtained a concentrator and set it up for her.

She had trouble sleeping for a few nights because the *click click whoosh* sound reminded her of the iron lungs in her polio ward nearly seventy years ago.

Anti-vaxxers can go straight to hell.
posted by workerant at 12:17 PM on November 21, 2017 [11 favorites]

posted by Soliloquy at 1:31 PM on November 21, 2017 [15 favorites]

Polio is horrifying stuff. Something worth pointing out in this thread is that even though polio's been mostly licked, certainly in the US, some of polio's near cousins can, on occasion, cause similar disease progression. The CDC maintains a website since 2014 that publishes their tracking of Acute Flacid Paralysis. In 2016, there were 144 cases. This August, my dear lab-mate's 4 week old infant went suddenly limp and still in his mother's arms, and is currently still breathing only with the help of a ventilator. In his case, it looks like the cause was a strain of enterovirus likely in the Coxsackie A group. That's a virus that causes mild illness in most people, and in small children, often causes hand, foot, and mouth disease (little lesions on the hand, feet, and around the mouth, along with a fever).

If you are sick, don't go to work. If your children are sick, don't send them to school. Wash your hands. Little illnesses can sometimes cause horrible outcomes.
posted by Made of Star Stuff at 2:29 PM on November 21, 2017 [8 favorites]

This is the sort of banal evil that makes me want to punch someone. Phillips Respironics has 4900 employees generating over a billion dollars in annual revenue. You'd think they could assign a couple mechanics part time to fab parts and engineer new components for these devices.

Right. It seems to be a manageable project for a single competent engineer working in their free time without pre-existing domain knowledge, which makes the whole thing a bad look for a major company with an institutional history to build on to decide they can't do it anymore.
posted by vibratory manner of working at 3:19 PM on November 21, 2017

If you are sick, don't go to work. If your children are sick, don't send them to school. Wash your hands. Little illnesses can sometimes cause horrible outcomes.
posted by Made of Star Stuff at 4:29 PM on November 21

It really is that simple.

I wonder what percentage of colds/flu/you-name-it would stop if ppl would stay home from work and/or school so they don't get others ill also.
posted by dancestoblue at 7:40 PM on November 21, 2017 [2 favorites]

Hoorah for the local friends with mechanical skills helping them.
posted by k8t at 9:08 PM on November 21, 2017 [1 favorite]

It's less 'would' stay home from work, dancestoblue, it's 'could'. A very large percentage of the population can't afford to take days off to stay home, or stay home with their children, for mild illnesses.
posted by tavella at 9:22 PM on November 21, 2017 [7 favorites]

I don't want to sound like an apologist for Phillips Respironics, but I think that they were probably legally obliged (or at least they were acting on the recommendation of their lawyers as well as their accountants).

The problem with supporting the iron lungs is that they've all been tinkered with. Think of the descriptions in the article - machines that have been made up of multiple other machines, and modified with ease-of-use and other necessary features.

If they send a service engineer out to look at a lung, and they are not able to put the thing back together at the end of the day, for any reason, their customer will be dead and they will be facing a multi-million dollar lawsuit.

I'm sure that the people who have done the work on the lungs have been competent, but I'd be surprised if they have fully documented all the work they've done. It's a huge legal risk.
posted by YAMWAK at 2:30 AM on November 22, 2017

I get that. But that wouldn't (well shouldn't) stop them from cranking out a few hundred copies of a wear item like the canvas spiral collar that they used to manufacture for half a century.
posted by Mitheral at 11:32 AM on November 22, 2017

Making the collars sounds like a great crowdsourcing project tbh.
posted by Joe in Australia at 1:38 PM on November 22, 2017

I feel like a lifetime supply for each person wouldn't cost that much.
posted by rhizome at 5:38 PM on November 22, 2017

I went out and did a video search, because I remembered reading an article long ago, written by a polio survivor who described sleeping in a rocking bed that pulled his diaphragm down to inflate his lungs and then pushed it back up to empty them.

Newsreel footage
Restored vintage bed
posted by The Underpants Monster at 8:10 PM on November 22, 2017

These are amazing stories from the point of view of those of us whose job involves "tech support". If you are the person who is paid to turn up a breakdown of somebody's car, plumbing, software application or whatever - then there is always a need to assess the urgency of a job. And when you get there you always have to decide whether you can fix the issue and how long that will take to achieve. But I can't think of any other instances where the importance of these questions is as high as it is here. If the engineer fails to reach the client, fails to diagnose the issue correctly, is not able to fix the issue, takes longer than a few hours to fix the issue or does not fix the issue correctly: then their client dies horribly right there in front of them. And they, the engineer, look very much the one to blame.

That's a tough gig.
posted by rongorongo at 10:12 PM on November 22, 2017 [2 favorites]

But if the proposed repair is needed to keep the lung operating, well, the client is going to die without it too. Patients give informed consent to surgical procedures they may not awaken from. And so forth.
posted by snuffleupagus at 8:06 AM on November 23, 2017

If the engineer fails

This is why I decided getting my PE stamp was probably a waste of time. I realized I didn't want to be responsible for signing off on things that could be life or death. In this case it's the same amount of stress but on a mechanic, repairman, machinist, or electrician as the case may be. Helluva friend, those people.
posted by RolandOfEld at 1:45 PM on November 30, 2017

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