Polio was a disease that devastated the United States in the 1950s, but with concerted efforts towards vaccination, is now on the verge of eradication. With the disease a distant memory for most, it’s easy to miss the fact that there are still those suffering the effects of the disease decades after its initial strike.
The iron lung was an invention that helped keep thousands of sufferers alive, by breathing for those who had lost the ability through the degenerative effects of the disease. A small handful of people are still relying on those machines today, and there’s a problem – who is around to keep these machines running?
The story is a powerful one, made up of interviews with those who still rely on their machines on a daily basis to stay alive. Particularly poignant is Lillard’s account of the repairman who came to fix her machine, and tried to leave before putting it back together. As someone who needs the machine operational to survive, this obviously wasn’t going to cut it.
Overall, these are people who have relied on help from friends, neighbours, and local tinkerers to help keep their machines running long after the companies responsible have long stopped supporting the hardware. This has led to an unenviable situation for Lillard herself – she’s no longer able to purchase replacement collars that seal her neck to the machine, as the subsidiary of Phillips responsible only has ten left in the country and will no longer sell to her. Naomi Wu and others are organising on Twitter to find a way to remanufacture these parts. If you’re in the know, or otherwise have the expertise, get involved or throw your ideas down in the comments.
It’s not the first time we’ve heard dark stories of medical equipment from years past – the story of the Therac-25 is particularly chilling.
143 thoughts on “A Callout: Parts For An Iron Lung”
“is now on the verge of eradication” – unfortunately not for long…
Came here to post exactly this. These folks could use some help in fabbing the consumable items that Philips Resipronics is slowly walking toward ‘end of life’–grisly pun noted but not intended. I had a panic attack over not being able to breathe just reading this. One technician disassembled one and tried leaving before putting it back together. That would certainly solve his maintenance conundrum *SMH*
Good to see you making a positive contribition!
Are there CAD DRAWINGS or detailed descriptions available for these parts? I just returned from the Ruderman Inclusion Summit where as part of the Makethon we were challenged with several disability issues to solve. In keeping with this, I would assist by sending out enquiry’s for availability or ability to ‘hack’ parts to help these critical challenges.
Larry, I just saw your post here. Do you feel you could find someone to make a collar like mine? Thanks. Martha Lillard
With additive manufacturing, it is possible to make lower cost prototype molds. Ideally, the original prints should be used to make parts. But if the original supplier won’t share them, they could be reverse engineered, though that does leave some risk that they won’t fit perfectly. I can try to help but need more information
I don’t know of anyone that makes the collar but surely there must be someone that can. Are there detail drawings of materials with dimensions. If so then surely someone can duplicate the collar!
You can get pills to help with your problem.
Enter the matrix!
LOOL! Nope, not possible ;)
I suppose my boyfriend builds my stuff too. You know that story was retracted right.
He(?) didn’t say women can do things so stop posting crap.
Source material for open sourcing a design?
Just found this open source reference: https://www.appropedia.org/Negative_pressure_respirator
Why aren’t these patients using other negative-pressure ventilation systems, namely cuirass type devices? This seems like someone looking for parts for a drum memory device because they refuse to upgrade — better technology is available, and this belongs in a museum.
This is your replacement part, not a rubber gasket.
A lot better than a tracheostomy.
I was prepared to be highly unimpressed by your suggested replacement, but that looks like it would be much more comfortable than I’d imagine an iron lung would be.
To be clear, if this woman wants to use the hardware she literally grew up with and people are willing to help her keep it running, that’s great. I’m not going to criticize anyone involved for the choices they make simply because I think I would choose differently. And it’s worth considering that there may be other issues as well, like the cost of the new equipment, that are preventing her from making a change.
Well said, while there may be better ways to achieve the same results today, that is not an excuse to leave people who for whatever reason are unwilling or unable to change to die. It really doesn’t matter what her reasons are for keeping the machine she has, I’m sure her medical advisors have told her about all the alternatives and she has chosen to keep what she has. She has asked for help and if there are people who can help her then that is wonderful.
Imagine breathing one way all your life….or most if it anyway…and there was equipment you relied on that whole time. Then something new comes along that supposedly ‘works better but it also works in a very different way. A lot of people transitioned through all the new equipment and were alright. But some just couldn’t do it. Now that they are older and being in an iron lung for up to 70 years…..it’s too much to ask to change now. I can’t imagine spending 10 minutes in an iron lung. Some of these people only need it for part of the day, some not at all.
I am not a doctor. However I’ve seen that transitioning from one life-long habit to another state of affairs is often enough to send elderly people downhill very quickly. Either it’s a shock to the system, or the routine is what kept them going. They loose momentum and either die sooner or mental decline sets in rapidly. This is my opinion on the matter.
Sorry, accidentally hit the report button. Stupid touchscreen.
She said she has tried other devices over the years and this one is the only one that works for her. Sometimes, older stuff actually DOES work best . Lol My Atari is still kicking butt after 42 years!!
Cost? I imagine the device you’re linking to isn’t exactly cheap.
“The iron lung now has a marginal place in modern respiratory therapy. Most patients with paralysis of the breathing muscles use modern mechanical ventilators that push air into the airway with positive pressure”
Why is there a problem with modern alternatives. My experience tells me you are all going about the solution in a micro manner, start with the big picture and a solution will pop up! ie: what can I roll in immediately?
That alternative requires surgery. It have both intrinsic and potential problems.
Potential problems include that of all surgery: it is a risk. People die from simple routine surgery every year, and I’m talking about modern hospitals with the best quality of medical service – worse conditions of course increase the risk.
And one shouldn’t discount the mental part of the problem. These people have learned to accept their iron lung as part of themselves or at least part of their world. Why make their lives worse without any good reason?
Yes, and they often die from infections by using positive pressure devices. Just as Christopher Reeve did. Polio people have inflammation problems, and in my case, I get terrible asthma after using a positive pressure vent for more than an hour.
All Iron Lung users were offered the opportunity to switch to modern equipment *or* take ownership of the iron lung and responsibility for maintenance. AIUI there are around 17 iron lung users; I understand their reluctance to switch to newer devices, but this is their specific lifestyle choice: there is no medical reason why they could not use modern equipment, but those users feel happier with the older equipment. I don’t judge them for that, but those are the facts.
Per the article: “Plus forcing air into the lungs can cause inflammation or damage the air sacs. When she’s sick, she can only heal if she spends full days in the iron lung. She calls herself “a human battery” because she has to recharge every day.”
So there are (as far as the patients are concerned) medical reasons to continue using the iron lung.
That’s for positive-pressure ventilation, aka the type of ventilator used in most ICUs and for surgery. Both the iron lung and cuirass are negative-pressure devices.
So we know she was offered alternative hardware, then. But do we know if she was offered this negative pressure alternative?
Using an Iron Lung isn’t a “lifestyle choice” for the remaining users, they have spinal deformities that make it impossible to use the vests that function in a similar way.
I don’t want to be harsh, but we’ve got to be realistic. Who on earth wants thrust his/her life on a machine that is becoming obsolete and will no longer be supported? This problem MUST have been going on for years, the problem of getting parts or finding people willing to help did not suddenly appear. It has been going on for years. Now suddenly there is a problem… yeah right, you can’t blame the manufacturer for it, I guess we all could be thankful for all the years that the parts were available, but you can’t expect any supplier to keep up stock or to keep factories running for one (or perhaps a few) person(s) who refuse to upgrade. I just doesn’t work that way and we all know it.
Though I’m sure that there are plenty of people who can think of a way to remake these parts. And I’m sure that there are people reaching out to help. That’s all very nice, really very nice. And it’s good that these people exist. However… if the problem isn’t solved correctly then we will see this sad story again in a few years…
Seems the larger picture is this same situation could be applied to a lot of other medical situations, now and in the future. The main question should be is what should be a suitable response to medical obsolescence?
Homeopathy of course.
Obsolescence is a HUGE problem with drugs. There are several examples of drugs which have been discontinued on the whim of the manufacturer, leaving the patients stuffed.
Especially, when the drug or formulation is healthier and/or more effective or the formulation can be improved to negate side effects and have a more bio-equivalent option.
That topic is closer to me as I’ve seen a book dis-appear or was a clandestine book for me and I suppose others that was titled “The Vitamins in Medicine” though a modern version that seemed to dis-appear into thin air. I have (or used to have) an older version though the newer version went into the vitamins as precursor parent molecules, metabolism, uses, effects and described the patent synthetic medicine versions also in the same way on the market at the time (~late 1990’s).
My thoughts with the medical devices more so is thorough documentation to be able to re-create the device and procedures to use the device in thorough detail so as I used to train my trainers and whole company really so that they can use the device when… “blind to the situation.” That is, no background or even little theory and use the device step by step if they know how to read the language of the procedures (use, maintenance, PM, calibration), system validation, IQ/OQ/PQ, design specification, functional/user specifications and DQ. .
3D scanning now days makes the CAD design work easier for the mechanical objects I am guessing (I don’t use CAD). A coordinate measuring system (CMM, Laser, Optical Measuring) would also be even better. For the chemical composition then whatever the material is quantitatively, qualitatively and identified clearly needs to be known as there are formula mixtures that are heterogeneous, homogeneous as well as material coating and layer methods and the even polymorph structural, crystalline or amorphous considerations.
Also, specifications for materials used and why used so for potential design improvements based on voice of the customer and critical control points, FEMA, risk mitigation and other impact assessment type observations.
Looks like there is info for the part based on comments above. Though as a advanced domesticated human being (yeah, I do get lazy in regards to some procedures) and indoctrination in DHHS mission to me (even though is their “motto”… “Improving the health, safety, and well-being of America”.
Not always on the whim of the manufacturer. Vioxx/Rfecoxib was recalled because it raised the risk of heart attacks, but when my mom was using it, it was almost a miracle drug for controlling her arthritis, and since it was recalled, she’s back to being nearly unable to function because she can’t do things like open doors.
Included in the question should be;
-BETTER CHEAPER REPLACEMENT HAS BEEN INVESTIGATED
-MEDICAL ASSISTANCE HAS BEEN REQUESTED
-only then should they reach out to the diaspora
Another issue I wanted to note while on my mind and I forgot since I went into medical devices more than agriculture, food and drugs as medicines is regarding the bio-equivalent issue. Not only vitamins in medicine being a topic… amino acids, lipids, carbohydrates, vitamins (duh by now), minerals being forgoten about.
Like even with drugs there are optimal protocols, procedure or methods that help benefit the effect of the drug when eating certain ag or food products. Even other supplements of extracted nutrients can benefit outcomes of treatments. One that came to mind to me and was blatantly overlooked with my Dad and I re-enforced over and over and over was l-methionine with the 5-FU. Some nutrients you want more of. Some nutrients you want less of.
Some nutrients can be bound to other molecules to cause the site specific benefit desired. Really challenging to me was the lack of detailed enzyme, DNA/RNA and manufacturer specific products used to test if the drugs used are even effective. Pathetic to me. Then to see more inflammation that caused his death from at the end after all the other criminal ill treatment was the Na bicarb dosing where I specifically told them to use Potassium Carbonate as another doctor had agreed with me.
They didn’t even try to treat his lymphademia caused by radiation therapy that was criminal, treat his kidney issue that I don’t believe was failure and took away his oxygen and I had to watch him die where I wanted to rub my knuckle on his sternum and the nurse just wanted me and my brother and sister to be there to watch him die.
Man, retarded people are taking over official positions and they have serious mental illness making others that are valid or poison victims by them look like they’re the ones with a serious issue.
The iron lung looks like an easy fix. There are other issues in the World we need to correct and prevent. I wanted a bio-equivalent Ilizarov apparatus splint… I got a lifetime rod and three screws in my femur since no one knew how to perform the treatment in the hospital.
I get cadnium dyed dentures and partial… where are my bio-equivalent teeth grown from my cells to be implanted?
There is a HUGE ISSUE with not much growth in autograph or syngraph technology. Criminal GREED along with primate predator issues are the causation.
I think you’re demonstrating a lack of imagination and empathy. At least put forth a good faith effort of putting yourself in her shoes. She’s been dependent on this machine to stay alive, and the machine has faithfully kept her alive for decades. That’s a pretty good track record. Would you have no qualms whatsoever about swapping it out for a completely different machine? This isn’t like choosing a car.
Added to that, she’s old and likely extra wary of new things. Likely on a fixed income and has been for a very long time. And healthcare is pretty limited, especially for people like her. There might be a good reason why she hasn’t upgraded for so long. Bodging the existing machine together and keeping it going might not only be a workable choice given her resources, it might be the only choice.
Empathy is the new ‘E’ in STEAM. ST and Empathy Art Music. Time to move on?
They have an obligation to supply parts for as long as they are needed.
Modern society sucks with the clever marketing of “need new every year” it needs to be stopped. That would rid us of Crapple and Micro$hite and lots of other companies that are no use at all to society.
Yes. “needs to be stopped”. A Butlerian Jihad perhaps? You can be on the High Table of Deciders. Make a spreadsheet of obligations and punishments to start. (Honestly. Why would anyone have an obligation to supply something for “as long as they are needed”?)
What Regnirps is TRYING to say in the most sarcastic way possible is: In critical situations old technology NEEDS to be replaced and upgraded, you can’t honestly expect companies to support something indefinitely.
Speaking for myself here: They supported those machines for more than 30 years, far and beyond the safe use lifespan of most vital medical devices, even pacemakers are usually replaced by this point. The condition of the machine above is poor enough that it may actually be making her sick by using it, she is likely breathing in plastic and metal particles due to material degradation (all things turn to dust is far more literal than it sounds) and much like a old car, just replacing a few parts won’t do any longer. it needs a full overhaul or to be replaced. This isn’t about your vapid first-world upgrade envy John, this is about someone’s survival. YOU can keep using your electronics forever if you can maintain them yourself in both software and hardware (at least with consumer hardware you can easily buy used devices on the cheap for parts) so there is nothing stopping you yourself from using things indefinitely beyond your own stubborn expectation that others do it for you, and your personal determination. My grandfather STILL uses a Pentium 2 to browse the internet and watch YouTube, I’m still using a Galaxy S3 (running Android Nougat no less!), if a 70 year old man and a 20 year old boy can maintain these things, you’ve got no excuse.
You really think that systems materials are dangerous in an iron lung? Assess and let’s find out. I’m not thinking so much. You never know with poachers now days too… maybe that systems has better shielding too for the body to heal.
For you concerns to be adressed more pertinant to the issues you have in mind… Why don’t you talk to the AEC, NRC and DOE regarding nuclear plants that do not have a safety record like the Father of the Nuclear U.S Navy tried to instill before his passing.
Please… before cheap crap made with plastic was outsourced to China along with our jobs… our forefathers over engineered for a reason. To last with maintenance service positions in mind! Some need to consider why items were made heavy for a reason. Waste and a reliance on ancient dead crap pumped out of the ground that is toxic along with other crap that comes into our not so toxic equilibrium surface!
To be advanced domesticated human that is a complex thinking and can consider others thoughts that are valid as well as their ways and means if safe and letting/allowing them to have freedom of choice and the right to make choices for survival of those that aren’t able to as well based on non-criminal pre-existing conditions because they’re not inbred pan troglodyte that doesn’t correct or prevent their criminal ways and means and therefore not being a dictator socialist bs collective that does whatever they only want with disinformation propaganda and stuff like that all selfish and narcissist with criminal primate predatory intent.
The whole point of banks and credit unions were and are to invest in communities. Criminal shareholders and stakeholders can be held accountable. All this modern civil society is for survival of a range of socialist activities… not just some rich spoiled kid who thinks his/her wealth was derived without a social system even if not your form of “capital corporate socialism” or whatever that form may be.
That’s my IMHO.
>”My grandfather STILL uses a Pentium 2 to browse the internet and watch YouTube”
Unless it’s a seriously clapped out machine overclocked on liquid nitrogen, I don’t habeeb it.
PII maxed out at around 450 MHz, so without hardware acceleration it just can’t decode the video stream in real time. Here’s an 800 MHz PIII being pegged out by watching a 240p youtube video:
+1 for Dune references.
A contract would be one reason for such an obligation.
You would think at the very least they would be required to release all the documentation and make the manufacturing dies accessible to someone who could and would use them to continue making the parts.
I mean I can’t even begin to imagine what these people have lived through and to just cut manufacturing for the components…. for me it goes against every standard of human decency.
That is a very valid point, medical equipment goes through expensive validation procedures, part of getting approval should be an agreement that should a drug or medical aid production be ceased then all of the technical information regarding manufacturing and servicing must be turned over into the public domain.
The Iron lung is probably quite basic and can be figured out easily enough, but what happens in the future to equipment that is a lot more complicated and contains things like firmware that may have to be reproduced on a new processor as the old model is unobtanium.
These things are 70 years old. A Stack of blueprints that have faded to invisibility. Forms, dies, and tools – if there were any – that went to recycling 40 years ago. Or docs that show it was all done by a couple dozen contract manufacturers. Your demands are likely impossible to meet.
There were many people who offered to help me after Jennings Brown’s story about me. But, unfortunately, no one actually helped. I am still searching for the type of industrial elastic that holds the collar on the respirator.I have 14 collars left, and they last about 7 months.
From what i gathered people were last trying to get a worn out peice of the elastic to a lab for identification and/or trying to copy the design. Is that correct?
Viable negative pressure equipment to power a cuirass is not easily found. Moreover, people with severe scoliosis may not be able to use a cuirass. I don’t think anyone is arguing that Iron Lungs are cutting edge–many are, indeed, in museums. What the community is looking for is a way to make a relatively small, cheap, consumable accessory that allows the Iron Lung users out there to continue their use of the equipment they trust.
A dressmaker or tailor should be able to help reverse-engineer this
Unfortunately, I am unable to use a cuirass or any other positive pressure device. Polio patients have problems with inflammation, and after an hour’s use of modern devices, I develop severe asthma. Also, the iron lung facilitates the heart circulating blood. What it does cannot be replicated by anything other than a negative pressure device.
They aren’t “refusing to upgrade”, the remaining Iron Lung users have a spinal deformity that makes the devices worn as a vest impossible for them to use.
I’m not sure what the seal is made of, but if it’s anything like a refrigerator seal, would a thin membrane of flexible material not suffice? How about something 3d printed using flexible filament to get the proof of concept working, then manufacture something more intensive if it proves unreasonable?
I’d be looking in the direction of diving equipment.
That’s what I was thinking, too. It sounds like a gasket that would need some way to be easily interfaced to the machine while being comfortable on the skin (considering 80 year old skin is more fragile than ours). It would have to be stiff enough to not collapse inward during the negative pressure part of the cycle. And it would have to be flexible enough to conform to the contours of her neck.
So, thick neoprene? A silicone sealed knit?
I also think the seals of diving dry-suits have a very similar requirements profile. If not even harder. Some air leaking into the iron lung just requires the pump to work a little more. Some water leaking into a drysuit compromises it’s heat insulation properties and severely limits it’s function.
So there should be materials available. Although expensive, it could be even possible to cut up such a suit if no other source is available. Diving gear is usually expensive, but so is any kind of medical stuff.
There is also new technology that did not exist when the iron lungs were created.
In theory it should be possible to take 3D scans of the owners individual necks and possibly print a thick circular collar that rotates inside the aperture of the lung, a hands width in thickness with curved edges on the inside and outside would probably suffice. The collar could be split in two halves for easy attachment and removal to the body with a felt, cotton or silk lining to be extra gentle on the skin of a septuagenarian, octogenarian or nonagenarian.
Is it worth crowdsourcing a new machine? Modern NPVS devices are much smaller and cheaper. The new machine may be more expensive then trying to reproduce the collar (no idea, not familiar with iron lung technology), but the patient quality of life is likely to increase significantly. Furthermore, you will again have manufacturer support for at least 10 years.
Yes the first effort should be seeking alternatives- I assumed others concluded NO?
If there are new versions of ironnlungs available then they must spend their time to determine if this is viable FORGET ABOUT $$$ for now!
No the first thing should be to find out if she wants a new machine. If it is indeed a financial issue then I’m sure a new machine would be a welcome solution. However it may be that she sees that machine as part of her life and would prefer to continue using it if possible. In the same way as some people want to stay in their own homes for as long as possible rather than move to sheltered accommodation.
The biggest problem is people ASSUMING what is best for a person rather than asking them what their needs are.
She’s at the stage of being the old woman in her cottage, in a small island in Alaska, unable to fend for herself anymore and demanding other people to helicopter in with assistance and aid to problems that would have much cheaper, better and simpler solutions. At some point you have to call “enough is enough”.
I don’t see anyone demanding anything, I see someone appealing for help so she can continue to live her life the same way she has done for decades.
I fear, crowdsourcing/-funding would not work very good in this case, as the number of affected people (patients) is very small.
I would look at Whitewater kayaking – they (we) use neck gaskets very similar in both our wetsuits and dry-tops. In fact, she may find that a newer neoprene design gasket will work as well as the old rubber, but here’s a link to a rubber replacement gasket.
Even if it isn’t a perfect fit gluing it to a rubber sheet is a simple operation.
There are also heavier duty versions for scuba drysuits.
The nylon backed neoprene foam that is used in diving dry suits is what I was going to suggest, but you beat me to it!
I have never seen an iron lung in 20 years in EMS. Almost universally people get a surgical hole cut in the throat through which a removable tube is inserted to connect to their breathing machine. I have to assume it is easier but it is obviously way more portable should they need to say travel by ambulance to a hospital or drive around in a wheelchair as Steven Hawking does.
That’s positive pressure; a huge difference for folks who use iron lungs.
Do you have a point or just being crazy?
To short, this is longer:
I don’t care if someone fakes building something – why would I care? And your “evidence” obviously isn’t as anyone with an IQ over 50 could see. But you maybe can’t.
I don’t care if this is some SEO game, most everything is today.
I don’t care if you think one shouldn’t be interested or learn about something because something remotely connected to it isn’t to my taste. Example: I don’t give a fraction of a shit about Al Gore but still believe in science and the evidence for AGW, something the majority of science deniers can’t understand.
So why are you complaining instead of producing your own f***ing content about this problem? OR is your real beef that this isn’t a problem worthy of you?
Am I the only one that’s thinking: Why not use a modern, common or garden variety ventilator?
Christopher Reeves has a conventional tracheostomy and ventilator but didn’t last as long as some of these Polio victims that have used an iron lung for decades. Infections, erosion of the stoma, discomfort… the list is long and not very health promoting.
If you’re ever seen the face of someone living with a tracheostomy on a vent and seen the lady in the picture you will know the difference. (Picture Stephen Hawkins face side to side with hers)
>”(Picture Stephen Hawkins face side to side with hers)”
Hawking’s face is affected by the neurodegenerative disease, so it’s not a valid point of comparison.
Yes u r rite but we must find out what they have against this option?
“We”? Really? Trillion dollar medical “systems” and it is back to the March of Dimes? Huge amounts of equipment are manufactured and supplied every year for every type of condition. The appropriate materials needed and fabrication techniques are all well understood and much better than they were when these iron lungs were made. I lean towards the opinion of someone above that this is a ludicrous and unstudied appeal for attention.
Here in the UK many scuba drivers wear dry suits with air tight neck seals. They are available in latex, silicone or neoprene. May be something suitable available
I think making something “equivalent” is fairly simple, but making something that you are willing to bet someone else’s life on is another matter.
I should think it would be possible for the handful of Iron Lung users to form a non-profit corporation, persuade Phillips donate all materials and plans for a write-off, and carry on manufacturing. The corporation can probably take on the liability, and shield contractors. I am pretty sure there are models for this in the drug industry, hopefully the concept can be extended to devices.
Liability is the key word in that statement, The collar in question looks to made of a tent canvas so given a worn out example piece a good upholstery shop could probably replicate it but if you told them that it was a medical device and someones life was going to be depending on it then they probably would not be willing to put their business on the line. The more likely way to get some of these fabricated in a volume quantity without the liability issue would be to label them as a “personal sauna neck seal”, claim the need for high quality control standards as they will be subjected to high humidity, heat and light pressure while having contact with a persons skin, you would then sell them as such in bulk to your limited customer base and dissolve the company.
This isn’t a bet-her-life deal. She can survive without the lung, it’s an assistant to breathing that helps her greatly. There would be room to experiment a bit. And given that she’s already in a tough spot, she might be amenable to trying a homemade solution.
Please understand the dilemma of the handicapped. It is more than the handicap…
Hegemony is the issue. Lots of folks with perfectly great intention, no fault there whatsoever, are saying do this or that to solve it, and would perform those works, and then walk away from the situation. That’s really cool. Thank Y’all.
But changes to equipment change their lives and therein lies the issue, they would like to have some say in the matter but those assisting are predisposed to make decisions and just do this or that as they please and deem fit as though they know better, then they walk away having left the handicapped individual’s life overturned. Often they believe that “just keeping them alive” is a job well done. “Alive” is different from “a life”. And seeing as they have a restricted life, they wan’t to protect every bit they have.
Compare how much listening effort one would put into assisting Stephen Hawkins… vs how much listening effort be put to working with Lillard. How much ability to communicate would Hawkins lose if if the techs got to unilaterally decide “this is enough, we’re done.”. You don’t just waltz in, do what YOU think is enough, then walk away. You let them say what’s satisfactory or not.
I had a disability come along in my own life… crash and burn, and when stabilized was sent to rehab work under two, a blind man and a polio victim. 3 yrs later I’m back up and 24/7/365 as lone biomed for a hosp, working way overloaded but happy as a lark. Got enough time in to retire and they finally loosed up and hired more staff, so I punched out. Have returned to helping the polio victim that helped me. Believe me, hegemony is the issue, they want a whole life. Changes made without listening to them consistently take that away. Just listen like you would to Stephen Hawkins.
Are you saying all their help is volunteer?
“Particularly poignant is Lillard’s account of the repairman who came to fix her machine, and tried to leave before putting it back together.”
Pro vs volunteer died at this point, didn’t it?
Everyone has completely missed that the iron lung gave her long years of a daily life that included the ability of easy speech. The alternatives proposed restrict or eliminates this. It’s a massive change to one of the few remaining abilities of her life and she is offhandedly being pushed into alternative decisions of others (hegemony) that put the gift of verbal communication you and I take totally for granted out of her easy reach or make it even impossible, and she does not want this! It will diminish her life. Hegemony is the issue… she wishes to speak as she has for many, many, many, many, many years.
“If you’re in the know, or otherwise have the expertise, get involved or throw your ideas down in the comments.”
I have and am, right here and now, and before. Those that are capable and interested will consider themselves and the tasks… and now know a bit more with which to evaluate their own fitness for the works. And I am protecting the interests of the handicapped to the greatest extent I can.
Someone start a Go Fund Me! Get a few of the top users out there and hack up a solid solution! The hacking community holds some of the finest minds in the world! I would volunteer to go and transport self free but have a few indeterminate months here providing home hospice care to another … well beyond worthy … of my assistance.
If there is anyone out there with a physician verifiable patient that uses a power wheelchair controlled using an Epson HX-20 and needs a replacement, please contact me. I have a one in pristine condition with nil to low mileage in OEM condition and will donate for free for their chair repairs. There are many out there which by now that cannot afford an upgraded system, and it’s been waiting long time now for someone to speak up in need of it for repairs to continue the quality of life they’ve grown used to.
““Particularly poignant is Lillard’s account of the repairman who came to fix her machine, and tried to leave before putting it back together.”
Pro vs volunteer died at this point, didn’t it?”
That is one side of the story, I can clearly envision a medical equipment technician who once they started taking things apart and finding the “hacks” that people had done to the machine to improve it for her found something that was unsafe would feel that even reassembling it would put him at a liability risk he wasn’t willing to take.
There is a point at which providing what a person wants does need to take a backseat to what others are able to provide.
Makes one’s skin crawl when you just get it out and say it right. What a patient needs takes a backseat to profit.
she’s no longer able to purchase replacement collars that seal her neck to the machine, as the subsidiary of Phillips responsible only has ten left in the country and will no longer sell to her..
Do I have to throw a TV out of my window here?
Biomed, If you read my statement above I said nothing about profit, I said “what others are able to provide”.
I don’t have a medical device background but I spent 20 years working on food packaging machines that put out thousands of servings per hour, a small unstudied/unapproved modification to a machine had the potential of contaminating 10’s of thousands of peoples food per day, there were many times that the company I worked for lost a great deal in profit in the name of safety and we were never reprimanded for it because the company new that if any of those false alarms had been ignored then peoples health could be endangered.
Read this quote from the linked article “A local engineer used a motor from an old voter registration device to build a mechanism that tightens the collar around her neck after she slips her head through the portal.” then look at the picture above, that chain driven contraption actually has an industrial chain looped around her neck with no safe guards visible, that alone would stop me from doing any work on it until it was proven to me that it was safe which would be hard to do since the article also mentions that it has failed trapping her till someone could pry her out in the past.
You cannot force a person (or company) to work on a piece of equipment that they feel is unsafe and in many cases it would be illegal for them to do so even if its what you or the patient wants.
“Fearless” Farris Lind opened his first gas station at the age of 20 in 1938. In 1963 he contracted Polio from a bad vaccine. It was supposed to be a “weakened” live virus but apparently wasn’t weak enough. Quite a number of people contracted Polio from early failures with the oral live virus vaccine.
Lind ran his “Stinker” gas station empire from an iron lung until his death in 1983. A few years later his family sold the business.
Amazing that someone born in ’38 would not have been vaccinated until the age of 25, when the oral vaccines were used in the schools.
Ah. Then he was 45 and never vaccinated in 1963. Crazy man.
This is exactly what I do for a living (www.iancollmceachern.com). If I am temporarily provided one of the parts, and any known background on it’s use (how it’s use, where it’s used, cleaning processes it sees, etc.) I will gladly create a 3d CAD design, 2D cad drawings and any other documentation needed as well as help to source the parts for anyone that needs them. I will gladly open source all of the above. Please contact me at the contact on my website and I will gladly help anyone in this endeavor. This is why I do what I do.
I for one have no problem blaming the manufacturer for their refusal to service the machines they made. They need to service them at least through the current patient’s end-of-life, not the machine’s “end-of-life”. The former represents an actual person’s life, the latter is little more than an arbitrary number. There are only 17 users left. These are not million-dollar parts we’re talking about. What’s a neck seal cost to make, $50?, $100?, $500?? The amount of money saved by stopping support to those 17 machines does not come close the deep sense of personal betrayal felt by the 17 users knowing that their lives are not worth the few hundred dollars a year it takes to keep the machines running. Come on, if I were a manufacturer I’d feel responsible for all those cases and would want to provide parts for all of them no matter how long the patients lived. Take the money out of the CEO’s multi-million-dollar-a-year salary. He won’t even miss it, and the great PR the company gets in exchange will more than make up for any loss. If you’re going to make machines that are critical to patients’ lives then be prepared to keep them running for as long as the patient lives. Plain and simple.
It may be insurance related. As long as they deliver parts they need to keep quite expensive insurance and procedure checks should something go wrong. The collar may be a 50ct part but costs tens of thousands each in overhead since there are only <20 users to share this fixed cost
Why would I manufacture anything if it binds me to lifelong (or longer) support? Either the initial price has to include these costs, or I can’t afford to make them at all. In fact, if I am forced to support/repair a device like these iron lungs, they will NEVER reach end of life. How do you calculate that cost? Maybe we can force everyone who reads Hackaday to read “The Wealth of Nations” as part of Hackadays eternal responsibility to readers.
The ethics of the cost benefit analysis considering liabilities regarding incentive and motivation to do something for someone else not only for the short term return on investment… for the longest term possible so not to disrespect the future generations which and can disrespect that previous generations of the future generations. I’m sure there is a social capital physics equation that can be applied also regarding all the coefficients and variables of concern to assure happiness that is logical, wise and emotional responsible for the means to the end.
There is no such thing except in faculty lounges and make-work graduate classes. If an exchange is agreeable to any two people, then there is no ethical question.
TheRegnirps: You are not thinking in detail enough regarding the dimensions of the ethics of an agreement. Think “feasance” or corruption issues like nonfeasance, misfeasance and malfeasance. There can be even worse incidents that cause deviations to processes also; such as adulteration not only through seduction, manipulation, coercion, intimidation, extortion and bribery as well as worse methods.
Like any process of a system; we must consider the inputs, processes and outputs.
Cause and effect can even use a Fishbone diagram to identify the root cause of a deviation to determine a corrective and preventative action so the deviation/deviant effect is not a future issue or concern.
They’ll reach end of life pretty soon, when the patients reach the end of their lives. The patients aren’t asking for a lot, from a purely mechanical point of view. From the POV of liability, though, I can understand why Philips don’t want their hands anywhere near a 60-year-old respirator, a literal life support device from the 1950s. I would guess it’s the lawyers, rather than a lack of the right sewing patterns, that are responsible for the situation. You could argue (or a shameless lawyer could) that even by providing spare parts, regardless of any disclaimers they have the patients sign, Philips are encouraging the device’s use. I’m sure there’s miles of paperwork you could generate to support suing a huge medical company when somebody’s frail relative dies in a 1950s iron tube.
The iron lungs themselves are ridiculously simple, and indeed were designed for fully manual, hand-driven (by nurses) operation during a power cut. It’s just an iron cylinder with a leather tubular bellows at the end. The bellows are pulled in and out, changing air pressure in the machine, which changes air pressure on the patient’s chest. It’s just a 1/2hp electric motor and a lever to move the bellows. Real diesel-age stuff.
Bruce, but can you still say the company is responsible for the machines upkeep when you read the full article and realize that her Iron lung is cobbled together from 2 different machines and has been “hacked” by friends and family to include things that were never part of the original design? That would be like buying a new ford, dropping in a chevy motor and then still expecting ford to honor the drive-train warranty when something broke.
Your Chevy example would be an upgrade, or customisation. In this case she’s had to cobble parts together because Philips wouldn’t provide her with repairs.
This isn’t a car. When the device was sold, it was with the expectation, by the device’s nature, that it would be needed for a patient’s whole life. Subsequent companies took on that responsibility.
The only exception to Philips’ clear moral responsibility, is the issue of a replacement device. Why can’t these patients accept a modern external respirator? There are pictures of a vest-type device that looks like it does the same thing. What reason do the patients have for keeping their long-obsolete devices?
This is not reasonable. You are saying that warranty and guarantee periods are meaningless and that newly developed life saving devices with no track record and created on an emergency basis are expect last longer than the owner’s heart, which as these were often children, could mean it has to function for 100 years. And that you expect no advances in the future or developments that would free them from the machines and therefore must build them to run flawlessly for 100 years or to be maintained and repaired without interruption for 100 years. Only if that was the agreement.
>”the few hundred dollars a year it takes to keep the machines running”
You do realize it costs a lot more than a few hundred dollars to keep up the manufacturing capability and the equipment, and the crew who knows about the proper maintenance of the machines for all that time?
If they were to make one more collar, it would literally cost them a million – as they would need to re-make all the original tooling and machinery, and re-train people to use them. Alternatively, they could be made in one-off pieces by hand, which would make them cost thousands each, and the insurance and lawsuit risks would count in the millions.
(you can bet if the new collar fails, the family will sue)
Do the people affected by polio need to be in the iron lung 24/7? Or it’s just for sleeping time?
I mean… The idea of spending whole life in such device is quite scary…
All the time.
Polio, or Infantile Paralysis. Most people were ill without being paralyzed or recovered from some. Others have permanent problems, including being unable to breathe. When I was a kid there were plenty of children and adults in braces and crutches, etc.
It is permanent. You do not get function back and may continue to lose more. Now… remember… a company knowing this up front sold a life-sustaining medical device to such a patient, but the company doesn’t want to be “for life”. They want to be just “for profit”.
Bullshit. They made a lifesaving device with a limited working life and no track record on which to base reliability. They very reasonably expected replacement technology to come along every 10 years or so, which it did. Wouldn’t you?
I expect my car to run for at least 50,000 miles. Why do I have to buy new transmission parts? There is full expectation the car will go 50,000 miles. By the way, it is a 1916 Buick touring car.
“Though most people recovered quickly from polio, some suffered temporary or permanent paralysis and even death.” From someone who knows.
The article says that some patients just sleep in it, some spend nearly all day but can spend some time out of it, but are obviously very weak. It seems to be something you spend the majority of your time in.
Reading the articles, it’s different. Some can get out for some hours a day. One woman sleeps 6 nights per week in it. Some needed it permanently and one woman was able to leave it for some decades but her degrading lung condition forced her back in.
I could be stating the obvious. it may have already been looked at. But what about scuba diving companies that make the neck seals for diving suits. most common are neoprene and latex
Scuba diving dry suits use neck seals. Maybe they can be repurposed.
To maintain the seal and pressure it needs to be flexible, air-tight and not stretchy.
I’ve been building my own small vacuum chambers for a few years. I’ve not made something like this, but would think that you’d want something like a laser-cut fabric to be vacuum-impregnanted with silicone. Then, ideally, cured under pressure for maximum lifetime.
The articles show something roughly conical. On the vacuum pressures involved, sewing through after impregnation to join multiple pieces together should be fine, and much easier to produce reliably than making a rotating conical form for the impregnation stage.
People are overthinking how hard of a challenge this is, the neck ring is a fairly simple thing, its 2 fastening rings connected by a tube of cloth (the article describes it as canvas but any tight weave would work), the cloth tube length is equal to the diameter of the rings, place the 2 rings next each other and the fabric will be loose, rotate one ring 180 degrees and the fabric will now form a simple iris seal, with a persons neck inside you would only rotate the slip ring about 140ish? degrees to form a comfortable seal.
So if an individual can buy a replacement part in the U.S. that keeps someone alive, is it subject to the ObamaCare Medical Device Tax? Or maybe it doesn’t matter because the part itself is illegal because it hasn’t gone through decades of FDA testing that costs millions of dollars? I guess a simple solution is to just buy he part Made in China on ebay – with “Free” shipping (actually U.S. subsidized). No matter what – these questions are evidence we are in the midst of a revolution – thanks to the Internet :-/
Getting the part from China is actually a good idea, The above article mentions Naomi Wu as wanting to help, If a worn out sample piece could be sent to her by someone then reverse engineering and small batch fabrication is something that is done all the time in her local area. Other parts like motors or electronics could probably be sourced local.
she’s no longer able to purchase replacement collars that seal her neck to the machine, as the subsidiary of Phillips responsible only has ten left in the country and will no longer sell to her.
She can no longer buy them from them. If she could provide one of the worn out pieces to be reverse engineered then any number of shops could probably make it, it just would not have the medical approval of the old supplier. Which would be better, not having one at all or having one from a new source?
Vendor has qty 10 in stock but won’t sell. Naomi Wu and others are organizing on Twitter so problem already in hand. Therac-25 mentioned and is also an emotionally charged issue, but was honestly was just a nurse that could accurately type at speeds faster than a speeding bullet during the earliest days of equipment automation.
I think we’ve been HAD!
Biomed, “she recently bought two from Respironics for a little more than $200 each. She said the company wouldn’t sell her any more because they only have ten left.” She and others were warned 13 years ago that this day was coming, as for why they wouldn’t sell all of their stock to her in one sale maybe it is because they have other people who also need them so they are limiting the sale quantities.
The Chinese MUST have copied this thing back then and made a million of them. Where are the parts?
That’s true, sourcing it from China can at least avoid the liability (cost) issue.
Although I think the free shipping is subsidized by Chinese government, not US.
Yes nicOmac. I was not referring to your group, right there, DOING the WORK, hands on, volunteering your own time, worrying hard purely for the good of another, laboring selflessly and giving forth full information rather than bits and pieces with “inadvertent” omissions. You told us UP FRONT she did get to purchase two which somehow were not mentioned in the article, we got only that the vendor has refused to sell to her. And btw that’s a good price! You aren’t the group that HAD us readers. Completely cleared up by you. Thank you. I was quite sure someone else dropped that info “somehow”, and you’ve confirmed it.
I will get in touch.
Biomed, If you want to get in touch with her and help however you can she has taken part in the comments section of the linked gizmodo article, this is what she said in reference to the neck seal –
It is just fabric, that stretches and wears out after about a year’s use and leaks as the threads spread apart. The part that no one has been able to reproduce is the elastic around the edges of the fabric that stretches over and holds it to the metal frame. It must be some kind of very thin industrial elastic that no one has access to.”
So if you have a contact in an industry which makes a strong thin elastic then perhaps contact her and give her that info, The best advise I can give is to get a physical sample to someone like Naomi who is living in an area and probably has contacts with people known for reverse engineering and fast development/production.
Would some sort of thinned or sprayed on silicone or other rubber help the life cycle of the material or would that cause other issues or am I missing something completely?
I’m not entirely clear why a more compact solution doesn’t seem to exist, something like a light weight thorax container/envelope which the patient wears a like the chest piece of a suit of armor. this would make mobility–albeit assisted–easier and much less expensive than a full body chamber.
if you google ” cuirass ventilator ” you will see that what your describing does and has existed, however for whatever reason some people are not using them.
And I read, that this has more problems with irritating the skin on the seals. In addition to the neck seal it needs a seal at the belly, which is longer. Perhaps it is also less comfortable in the long run. E.g. you can probably not scratch your body in this tight fitting cuirass. I am not sure what is more disturbing while trying to sleep: Wearing this hard shell or lying somehow in a covered bed with the neck seal.
Yeah, you’re right. I’ve found those after I posted, and I also read that the main drawback of a Curiass Ventilator is that it can result in pressure sores for the patient if used for prolonged periods of time, hence the need for the whole-body device. It’s nonetheless an interesting problem to think about.
So instead of people being jerks about this request, simply ignore it if you feel it isn’t necessary. These are elderly people who’ve spent their entire lives tied to these machines. I know “geeky types” can often be socially awkward, but come on, show some heart.
See link — this guy has found someone who can fab parts — perhaps reaching out to him would help. He is apparently a lawyer and could (theoretically) be easily reached.
Interesting that I read an article on a magazine (wired? bbc? Don’t remember) about this very subject and thought “Why the international hacker comunity hasn’t created something to help yet?”. Here you are…My personal THANKS to everyone who assists these poor souls.
A few years ago I saw an iron lung from the 1970’s in an exhibition in Copenhagen. What struck me was that it looked way more advanced than anything I had seen in the old medical textbooks, usually in rows during 1950’s polio epidemics. The interesting thing about it was that they had continued to develop the technology for quite a few more years after many countries had changed to mechanical ventilation via tracheostomy. Consequently it had extra features such as a glass dome which fitted over the head like a space helmet. This allowed oxygen to be added to the breathing air. This helmet also had small curved rear-view mirrors around the rim which looked exactly like those seen in some fighter pilot cockpits. It also had some kind of intercom too. I find it fascinating sometimes to imagine where old abandoned medical technology might have gone if the modern replacement had never existed and the old tech had continued to be developed. If I can find the photos I took I will post them.
I have a complete iron lung machine in Arcata California I’m willing to let it go for $3,000 cash right now first come first serve as is where is I’m looking serious buyers with cash only don’t waste my time please if you don’t got three thousand bucks can’t board this train don’t even try boy email me at Dill Force at hotmail.com or call me at 503-509-7834
I was reminded of this article by another interview with a current iron lung user living in the time of covid-19. It’s weird to come back and see all the debate on “why don’t they just use modern ventilators” when, in the last year, we’ve now got so much solid evidence that long term positive pressure ventilation (modern ventilators) are very problematic. Necessary for some, and clearly they’ve been the only way many of the worst cases of covid-19 have survived, but still, a weird bit of medical technology struggles being a circular struggle against the body’s limitations in times of extreme sickness.
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