Physician scientist here -- this is a unique and somewhat odd case where Martha prefers to use the iron lung over modern alternatives.
She would likely do fine with a modern non-invasive positive pressure ventilation (NIPPV) approach.
There are many patients with other illnesses (COPD, ALS, etc.) that depend on nocturnal ventilation -- most commonly nocturnal BiPAP (two pressure levels that support respiratory muscles).
I am sure she tried a CPAP or something better suited for her needs.
Maybe Sleeping with a mask on your face is more disturbing than sleeping neck high inside a machine. She definitely tried a face mask and determined this machine is better.
But most people on CPAP did not get the chance to try an iron lung.
So Maybe this is a chance to create a new product, any entrepreneurs here?
I wonder why this isn't mentioned anywhere? If she is worried about not having parts for the iron lung, it's more about her preference to use it than whether she can live or not, it would seem.
Eh, there's a league of difference between "does fine" and "does well".
I'm willing to bet she's had many doctors suggest modern alternatives and that she's tried alternatives, not the least because iron lungs are generally not produced anymore so they're more difficult to maintain and can't easily be replaced.
However, if she truly prefers it and it's therapeutic and she's able to maintain the device... what's the problem? "This other thing is a newer treatment," isn't really a description of efficacy or appropriateness or therapeutic benefit or patient comfort or outcome.
Just because something is old doesn't mean it's bad. A treatment that's proven to be effective for 50+ years shouldn't be discarded out-of-hand because newer treatments exist.
Polio is one of those diseases that remind me we're not really taking SARS-2 seriously enough.
From Wikipedia's article on Polio:
> Up to 70 percent of those infected have no symptoms. Another 25 percent of people have minor symptoms such as fever and a sore throat, and up to 5 percent have headache, neck stiffness, and pains in the arms and legs. These people are usually back to normal within one or two weeks. Years after recovery, post-polio syndrome may occur, with a slow development of muscle weakness similar to that which the person had during the initial infection.
SARS-2 binds to ACE2 which is present everywhere in the body [1]. Loss of smell might apparently be a nervous system invasion. [2] Brain scans post COVID show brain matter reduction. [3] REM sleep seems to be disturbed in 4 of 11 long covid patients. [4]
We've stopped taking this thing seriously with potentially disastrous consequences
I won't argue you needn't worry about long term covid effects but I don't think comparison with polio does much to support that. Polio was known to cause paralysis in some patients since antiquity while covid is essentially a completely new disease that we just don't know that much about yet.
Considering the global reaction to Covid, it is extremely serious. Anymore and we’d all be living under Beijing style lockdown and traffic light system
We shut down the economy, forced everyone to stay home, made everyone wear masks, warp speeded multiple vaccines, and still make people wear masks at the doctor and the post office. The world has to keep turning at some point.
Yep, people seem to forget history. The polio vaccine had issues when it was rolled out in 1955. No one bats an eye taking it today because it saves lives.
I understand your sentiment, around people treating different diseases differently, but I am also not so sure that comparing polio and SARS-CoV-2 makes sense. Polio created a lot of psychological fear due to the graphic imagery of children dying or becoming permanently deformed. The WHO says (https://www.who.int/news-room/fact-sheets/detail/poliomyelit...) that 1 in 200 infected with polio experience irreversible paralysis (usually the legs), and 5-10% of those with paralysis die, meaning the IFR was 0.025%. The IFR for COVID-19 is incredibly low for those under 50, as most of the deaths impacted senior citizens. Even the CDC's conservative planning scenarios (https://www.cdc.gov/coronavirus/2019-ncov/hcp/planning-scena...) use a planning IFR for minors of 20 in 1M infections (0.002%) - which is an order of magnitude less than polio.
The side effects you called out (like loss of smell) are rare to begin with, subside over time for most people, and aren't as serious as having to live on an iron lung. Additionally, it isn't clear if "long COVID" is even a real thing or just a casual/imprecise term for the unknown. My speculation is that many illnesses like the common cold have similar side effects, but we're only now rigorously studying and measuring them because of the prominence of COVID-19 in the public's mind.
I would also point out that there are potential consequences from a lot of things we've done in response to COVID. Limiting social interaction, hiding faces/emotions, reducing oxygen intake via masks, normalizing government overreach, hurting the economy, keeping children out of schools, and so on can have impacts we don't yet understand. And then there's the potential for vaccines to have some kind of long-term side effect of their own. My sense of the probabilities and risks is that it is preferable to take the vaccine, implement some basic hygiene protocol, and avoid the worst of it. But I also feel there is a fairly wide spectrum of reasonable choices and policies in this situation.
I'm also not sure what you're expecting in terms of taking it "seriously". COVID is going to be endemic. Everyone will be exposed to it over time. In terms of government intervention, I don't think it ever made sense to do more than 'flattening the curve', and even that was perhaps a step too far since those who are healthy and under 50 can more or less treat COVID like any other common illness. It may have even been preferable for that group to simply contract it and build up antibodies so that others who are more vulnerable could re-enter society with a lesser chance of transmission.
The amount of insinuations, accusations and anti-American/tech/white/male/journalism sentiments packed into such a small thread is incredible.
It's a news story about a health patient, yet Naomi seems to expect NPR to act as Martha's personal insurer and care advocate. Would it have been better if NPR didn't publish it at all? Then Naomi would never have been given the chance to virtue signal for exposure. Lose-lose.
Here's a fascinating and inspiring article about a man who is confined to an iron lung who is an attorney and uses his computer while in his iron lung:
Sadly I don't think facts help these people change their minds. The opposition is rooted generally in perception and not truths. Anything can be rejected this way.
My grandfathers brother had polio and was crippled for life.
I always remember how my grandparents talked of vaccines having seen the effects of polio and smallpox when they where growing up. They considered vaccines a modern miracle and could not imagine not getting them.
Perhaps a dumb question but I Googled and looked in the article. Do people spend 24/7 in iron lungs or simply do "sessions" or sleep in them? It was unclear to me how they actually function.
An iron lung works by lowering the pressure around your body, while keeping the pressure around your head at atmospheric pressure. That gradient pushes air into your lungs, and then the iron lung raises pressure around your body to squeeze out that air.
People who have had polio may lose function in their diaphragm muscles and require ventilation at all times. An iron lung user may exit the iron lung temporarily and use some other kind of ventilator, and some people have learned to force air into their lungs using the muscles in their mouth and throat without any machine. As you can imagine the latter can be tiring:
Depends on the patient and the cause. Some require them 24/7.
In the case of polio, the nerves controlling the diaphragm are sometimes affected. This can be partial, with a reduced but present breathing, or completely absent.
In either case, but especially when only partial, people can often adapt when conscious and upright. Other muscles may not be affected, and they can use non-diaphragm muscles to expand/contract the rib cage. In mild cases this is just an assist and provides the extra ventilation for strenuous activity. In serious cases it's required to keep them conscious.
While such adaption becomes an unconscious reflex, it's still largely suppressed when asleep.
There are some parallels to how people with obstructive sleep apnea adapt. They may be able to breathe (e.g. through their mouth) during the day but at night, the instinctive breathing process isn't working quite right.
The result is usually some kind of sleep apnea. Waking up feeling suffocated and having to will yourself to breathe. In the extreme, if that reflex doesn't kick in either, it could cause a hypoxic event, that inhibits breathing even more, and that's potentially fatal.
It may seem strange for younger HN readers to see an iron lung. When I was growing up they were common. I can remember going to the Dayton Hamvention, the annual largest gathering of ham radio operators, and seeing a couple dozen folks in iron lungs being wheeled past the exhibits. There was no disease more terrifying to parents than polio.
I was so young I don't remember getting the shot. My late father said the polio vaccine was right up there with going to the moon for scientific accomplishments in his lifetime.
I saw one in person at a medical museum a few years ago. Terrifying device when you know the history behind it.
I’m way too young for all this stuff first hand, but I’ve seen the pictures of polio wards and documentaries about how bad/scary it was. Glad I missed it.
I hope this isn't a situation where she can't hire someone to make new collars, for example, because they couldn't be "certified" soemhow.
I'm sure there's all sorts of subtleties and issues with keeping this machine running that aren't apparent at first thought (or even glance).
It doesn't seem beyond the bounds of what home brew hardware hacking can do, even without the lovely set of pre-made suitable parts the dysfunctional machine is.
First, there has to be meaningful enforcement against abusive pages that deny users a meaningful choice (e.g. by requiring extra clicks or waits to say no). noyb.eu is working on that (and accepts donations).
Once that is done and the popups offer a meaningful single-click yes/no choice, users have to learn that the "no" button now actually works instead of leading to a labyrinth that wastes your time.
Once that has happened, it's likely that the consent rate will be very low, at which point sites may start not showing those popups and simply assuming a no, which they're allowed to do already, they just prefer to try for the quick yes...
I know some Philips Healthcare Executives. Tomorrow I will write an email. It would be great if they could help. Most likely I will get a "we'll see what we can do" and nothing happens. But you never know.
My son is just about to turn 5. Martha's story makes me so sad, I find no words.
But hey, she's now "naturally immune" to it, which is equivalent to having been vaccinated for it, right? Right? /sarcasm
The "natural immunity" I gained by suffering through chickenpox before that vaccine was available now means I risk getting shingles at some point in the future
[+] [-] semenko|4 years ago|reply
She would likely do fine with a modern non-invasive positive pressure ventilation (NIPPV) approach.
There are many patients with other illnesses (COPD, ALS, etc.) that depend on nocturnal ventilation -- most commonly nocturnal BiPAP (two pressure levels that support respiratory muscles).
[+] [-] teruakohatu|4 years ago|reply
It seems understandable that a person might become attached to a device that keeps them alive.
Also it might be more comfortable for her sleeping without a mask on, if she is used to the sound of the motor.
[+] [-] mikesabbagh|4 years ago|reply
Maybe Sleeping with a mask on your face is more disturbing than sleeping neck high inside a machine. She definitely tried a face mask and determined this machine is better.
But most people on CPAP did not get the chance to try an iron lung.
So Maybe this is a chance to create a new product, any entrepreneurs here?
[+] [-] skrbjc|4 years ago|reply
[+] [-] Pxtl|4 years ago|reply
[+] [-] da_chicken|4 years ago|reply
I'm willing to bet she's had many doctors suggest modern alternatives and that she's tried alternatives, not the least because iron lungs are generally not produced anymore so they're more difficult to maintain and can't easily be replaced.
However, if she truly prefers it and it's therapeutic and she's able to maintain the device... what's the problem? "This other thing is a newer treatment," isn't really a description of efficacy or appropriateness or therapeutic benefit or patient comfort or outcome.
Just because something is old doesn't mean it's bad. A treatment that's proven to be effective for 50+ years shouldn't be discarded out-of-hand because newer treatments exist.
[+] [-] kaitai|4 years ago|reply
[+] [-] spion|4 years ago|reply
From Wikipedia's article on Polio:
> Up to 70 percent of those infected have no symptoms. Another 25 percent of people have minor symptoms such as fever and a sore throat, and up to 5 percent have headache, neck stiffness, and pains in the arms and legs. These people are usually back to normal within one or two weeks. Years after recovery, post-polio syndrome may occur, with a slow development of muscle weakness similar to that which the person had during the initial infection.
SARS-2 binds to ACE2 which is present everywhere in the body [1]. Loss of smell might apparently be a nervous system invasion. [2] Brain scans post COVID show brain matter reduction. [3] REM sleep seems to be disturbed in 4 of 11 long covid patients. [4]
We've stopped taking this thing seriously with potentially disastrous consequences
[1]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7167720/
[2]: https://www.nature.com/articles/s41593-020-00758-5
[3]: https://www.medrxiv.org/content/10.1101/2021.06.11.21258690v... and https://www.medicalnewstoday.com/articles/covid-19-may-reduc...
[4]: https://pubmed.ncbi.nlm.nih.gov/33588262/
[+] [-] tgflynn|4 years ago|reply
[+] [-] ekianjo|4 years ago|reply
This is a bullshit publication, not properly designed. Don't trust every paper that goes out there, more than 60% cannot be replicated.
[+] [-] bigodbiel|4 years ago|reply
[+] [-] jimmaswell|4 years ago|reply
[+] [-] JTbane|4 years ago|reply
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1383764/
[+] [-] bserge|4 years ago|reply
[deleted]
[+] [-] throwawaysea|4 years ago|reply
The side effects you called out (like loss of smell) are rare to begin with, subside over time for most people, and aren't as serious as having to live on an iron lung. Additionally, it isn't clear if "long COVID" is even a real thing or just a casual/imprecise term for the unknown. My speculation is that many illnesses like the common cold have similar side effects, but we're only now rigorously studying and measuring them because of the prominence of COVID-19 in the public's mind.
I would also point out that there are potential consequences from a lot of things we've done in response to COVID. Limiting social interaction, hiding faces/emotions, reducing oxygen intake via masks, normalizing government overreach, hurting the economy, keeping children out of schools, and so on can have impacts we don't yet understand. And then there's the potential for vaccines to have some kind of long-term side effect of their own. My sense of the probabilities and risks is that it is preferable to take the vaccine, implement some basic hygiene protocol, and avoid the worst of it. But I also feel there is a fairly wide spectrum of reasonable choices and policies in this situation.
I'm also not sure what you're expecting in terms of taking it "seriously". COVID is going to be endemic. Everyone will be exposed to it over time. In terms of government intervention, I don't think it ever made sense to do more than 'flattening the curve', and even that was perhaps a step too far since those who are healthy and under 50 can more or less treat COVID like any other common illness. It may have even been preferable for that group to simply contract it and build up antibodies so that others who are more vulnerable could re-enter society with a lesser chance of transmission.
[+] [-] jasonpeacock|4 years ago|reply
https://twitter.com/RealSexyCyborg/status/145289814620013363...
[+] [-] corndoge|4 years ago|reply
It's a news story about a health patient, yet Naomi seems to expect NPR to act as Martha's personal insurer and care advocate. Would it have been better if NPR didn't publish it at all? Then Naomi would never have been given the chance to virtue signal for exposure. Lose-lose.
[+] [-] rootusrootus|4 years ago|reply
[+] [-] dang|4 years ago|reply
The Last of the Iron Lungs - https://news.ycombinator.com/item?id=15742901 - Nov 2017 (65 comments)
Also:
One of the Last People to Live in an Iron Lung Is a Longhorn - https://news.ycombinator.com/item?id=25785650 - Jan 2021 (1 comment)
Reinvented ‘Iron Lung’ Technology - https://news.ycombinator.com/item?id=22756993 - April 2020 (1 comment)
Ask HN: Where to find specifications for pressure for an Iron Lung - https://news.ycombinator.com/item?id=22582257 - March 2020 (3 comments)
A Callout: Parts for an Iron Lung - https://news.ycombinator.com/item?id=15777702 - Nov 2017 (23 comments)
[+] [-] poo-yie|4 years ago|reply
https://www.usnews.com/news/healthiest-communities/articles/...
[+] [-] poidos|4 years ago|reply
> To this day, the words he recalls her saying make him emotional: "When I'm dancing with others," she said, "in my head I'm dancing with you."
[+] [-] scotty79|4 years ago|reply
Mention this to people that think covid is mild non-issue.
[+] [-] tfigment|4 years ago|reply
[+] [-] SigmundA|4 years ago|reply
I always remember how my grandparents talked of vaccines having seen the effects of polio and smallpox when they where growing up. They considered vaccines a modern miracle and could not imagine not getting them.
[+] [-] heavyset_go|4 years ago|reply
[+] [-] the_doctah|4 years ago|reply
[+] [-] jsonne|4 years ago|reply
[+] [-] tdeck|4 years ago|reply
People who have had polio may lose function in their diaphragm muscles and require ventilation at all times. An iron lung user may exit the iron lung temporarily and use some other kind of ventilator, and some people have learned to force air into their lungs using the muscles in their mouth and throat without any machine. As you can imagine the latter can be tiring:
https://en.wikipedia.org/wiki/Glossopharyngeal_breathing
[+] [-] retrac|4 years ago|reply
In the case of polio, the nerves controlling the diaphragm are sometimes affected. This can be partial, with a reduced but present breathing, or completely absent.
In either case, but especially when only partial, people can often adapt when conscious and upright. Other muscles may not be affected, and they can use non-diaphragm muscles to expand/contract the rib cage. In mild cases this is just an assist and provides the extra ventilation for strenuous activity. In serious cases it's required to keep them conscious.
While such adaption becomes an unconscious reflex, it's still largely suppressed when asleep.
There are some parallels to how people with obstructive sleep apnea adapt. They may be able to breathe (e.g. through their mouth) during the day but at night, the instinctive breathing process isn't working quite right.
The result is usually some kind of sleep apnea. Waking up feeling suffocated and having to will yourself to breathe. In the extreme, if that reflex doesn't kick in either, it could cause a hypoxic event, that inhibits breathing even more, and that's potentially fatal.
[+] [-] rmason|4 years ago|reply
I was so young I don't remember getting the shot. My late father said the polio vaccine was right up there with going to the moon for scientific accomplishments in his lifetime.
[+] [-] technothrasher|4 years ago|reply
Ah, now you're making me nostalgic for those childhood trips to the now demolished Hara Arena with my dad.
[+] [-] MBCook|4 years ago|reply
I’m way too young for all this stuff first hand, but I’ve seen the pictures of polio wards and documentaries about how bad/scary it was. Glad I missed it.
[+] [-] h2odragon|4 years ago|reply
I'm sure there's all sorts of subtleties and issues with keeping this machine running that aren't apparent at first thought (or even glance).
It doesn't seem beyond the bounds of what home brew hardware hacking can do, even without the lovely set of pre-made suitable parts the dysfunctional machine is.
[+] [-] spicybright|4 years ago|reply
I don't even think anyone but the people making the collars could verify it's safety.
[+] [-] fumblebee|4 years ago|reply
[+] [-] Zababa|4 years ago|reply
[+] [-] tgsovlerkhgsel|4 years ago|reply
First, there has to be meaningful enforcement against abusive pages that deny users a meaningful choice (e.g. by requiring extra clicks or waits to say no). noyb.eu is working on that (and accepts donations).
Once that is done and the popups offer a meaningful single-click yes/no choice, users have to learn that the "no" button now actually works instead of leading to a labyrinth that wastes your time.
Once that has happened, it's likely that the consent rate will be very low, at which point sites may start not showing those popups and simply assuming a no, which they're allowed to do already, they just prefer to try for the quick yes...
[+] [-] watt|4 years ago|reply
[+] [-] a1369209993|4 years ago|reply
[+] [-] Cryptonic|4 years ago|reply
My son is just about to turn 5. Martha's story makes me so sad, I find no words.
[+] [-] silexia|4 years ago|reply
[+] [-] jupp0r|4 years ago|reply
[+] [-] tamaharbor|4 years ago|reply
[+] [-] pmarreck|4 years ago|reply
The "natural immunity" I gained by suffering through chickenpox before that vaccine was available now means I risk getting shingles at some point in the future
[+] [-] spicybright|4 years ago|reply
[deleted]
[+] [-] dang|4 years ago|reply
https://news.ycombinator.com/newsguidelines.html
[+] [-] unknown|4 years ago|reply
[deleted]
[+] [-] api|4 years ago|reply