[DoreenMichele]

I made some remarks about ventilator alternatives here:

https://news.ycombinator.com/item?id=22624959

To pull out some pertinent details:

Ventilators for covid19 seem to be mostly for inflammation and fluid in the lungs (aka pneumonia), not lung or chest paralysis.

If you need a ventilator due to inflammation or fluid build up, you can do other things to address those issues.

If you are doing home care for serious lung issues, a downside of mechanical intervention is that you probably don't know how to adequately sterilize your equipment. This means nasty stuff grows on the equipment and then this nasty stuff gets delivered directly into the lungs.

So I'm not thrilled to pieces to see the emphasis on "ooh, shiny!" homemade technical solutions in place of non-invasive home care.

You can do lung clearance without mechanical intervention. This can make a ventilator unnecessary.

You can do lung clearance easily on your own in the shower by standing with your feet shoulder-width apart or a bit wider, bending over as far as you can and coughing hard.

If you bring up a lot of fluid from the lungs, it looks and feels a whole lot like vomiting. My sons and I call it "puking up a lung."

Inflammation can be combated with commonly available non drug remedies, like caffeine, lettuce, avoiding pro inflammatory foods (avoid peanut oil like the devil himself made it for you, limit or avoid bacon as it is hard on the lungs).

Etc.

Please see my previous remarks about best sleeping positions, etc.

I am very concerned that homemade ventilators are going to become a source of secondary infection and this secondary infection will be worse than covid19 because it will be bacterial or fungal and it will be antibiotic resistant.

If I had any idea how on Earth to start a counter movement, I would be all over it. I have no idea how to do that, so I occasionally leave a comment on HN giving some of my thoughts, which isn't likely to exactly catch fire. This is today's comment in that vein.

[whatshisface]

>We have a core developer team publishing open source designs with ongoing communication with medical professionals regarding needs requirements, testing and validation processes. The developer team is led by OpenLung in Canada in collaboration with an Irish based engineering and operations team. The developer team is led by Trevor Smale, Dr. Andrew Finkle, and David O’Reilly from OpenLung as well as Conall Laverty and Dr. Keith Kennedy from Ireland.

It sounds like a lot of these vents will end up in the hands of medical professionals. We're looking at a future with warehouses or stadiums full of sick individuals, and also a future where everyone will be pulled from every specialty to work on COVID-19, so there is some evidence that trained professionals and patients will outnumber commercial ventilators. Depending on how many people get sick at once, we could easily end up in a situation where the patients waiting outside are so numerous that they could consume as much equipment as anyone could put together, no matter how much the real manufacturers ramp up production.

[DoreenMichele]

I'm still not thrilled because hospitals actively breed antibiotic resistant infections. They are a primary source.

Keeping invasive equipment adequately sterile is hard to do, even in a hospital. It's just the nature of the beast.

To be clear, I'm extremely not thrilled at the global acceptance that "we need a zillion ventilators" instead of "we need non invasive alternatives and we need to educate the world as to what they are."

It's well known this is a problem with this kind of equipment. I'm aghast that the medical establishment isn't freaking the fuck out at the need to find some answer better than ventilators because widespread use of ventilators has a rather high probability of leading to the development of new antibiotic resistant infections for funsies, just as we think the worst is behind us.

[pbhjpbhj]

Non-invasive alternatives to "breathing for someone whose lung function has fallen below life-sustaining levels" sounds like [deadly] bullshit.

I'm not sure coughing in the shower is going to do it for someone about to die from hypoxemia?

[DoreenMichele]

Cystic fibrosis accounts for about a third of all adult lung transplants in the US and about half of all pediatric lung transplants. At the time that I was diagnosed with a relatively mild form of it, life expectancy in the US was 36.

So I have a quite serious lung condition and I used to own and use (and sterilize at home) various forms of mechanical intervention. I no longer use mechanical intervention, in part because I'm better off when I can find effective alternatives.

I'm describing things I know from first-hand experience to work well in the face of lung problems that are supposed to have long ago killed me.

I'm doing my best to be very careful and conservative in what I say. I feel it's actively irresponsible to not share such thoughts, in part because a lot of places are de facto rationing health care because there simply aren't enough supplies to go around.

If you can't get to a hospital or are denied entry because of overwhelming demand, having the option to puke up a lung in the shower is better than having no alternatives to a ventilator.

And perhaps doctors will see my remarks, realize this is a valid criticism and decide to develop some best practices to try to reduce the use of ventilators overall.

Worst case scenario if I speak up and no one agrees: I get downvoted to hell. Hardly a novel experience.

Worst case scenario if I say nothing: Lots of people die who might not have.

So it's an easy decision on my part. When weighing the personal pain of people downvoting me and calling me crazy versus death for others, it's a no brainer. I'll take my lumps, thanks.

[pbhjpbhj]

IANAMedic: I assumed you/a loved one had CF. As I understand it CF creates a thick mucus that blocks the lungs.

But Covid19 reportedly destroys pilii, and the cells that bare them, and when the immune response kicks in fully it attacks lung tissue as well as the virus.

_If_ this understanding of mine is corrext, then it seems clearing the lungs in CF opens them to take oxygen that's there (if the mucus is moved the underlying lung function is still enough), but in Covid19 even if cleared the lung tissue is damaged and can't process enough oxygen from a regular supply; people need higher pressure and/or higher saturation oxygen for a period in order to recover lung function.

Maybe I'm wrong.

It's certainly not wrong to share how you clear lungs affected by CF if you're explicit about any limitations in your knowledge.

As an example of this that seems counterfactual to me -- as a medically uninformed person -- BiPAP, which is commonly used for CF sufferers I gather, at least one critical care source suggests is not really useful for Covid19 (https://emcrit.org/ibcc/COVID19/#noninvasive_ventilation_(Bi... ) treatment.

The problem with suggesting treatments is that people may resort to self-treatment alone and not seek proper medical care; that could cost lives. So I think your analysis is wrong if you're suggesting 'giving advice can't be harmful'.

[DoreenMichele]

I stated as clearly as I could that I have a form of CF. I also happen to have a son with the same diagnosis I have.

CF often results in significant lung damage. I used to have a hole in my left lung. I don't appear to have such anymore.

The tissue is often eaten away by infection over the course of years and a drop in lung function below a certain point is the typical reason for lung transplant. People with CF are the single largest recipient group for lung transplants, as far as I know and based on the figures I'm aware of.

So lung damage with CF is common and it is routinely quite substantial. They are kept functional with daily air clearance techniques that can be done independently. Some of them do not involve mechanical intervention.

Even if you have impaired lung function in terms of tissue damage, removing the fluids and phlegm can help the impaired tissues function as well as possible in spite of other issues.

I did my best to state up front that this will be helpful in some cases but not others. I did my best to define where it is likely to be helpful: Where you have fluid build up and inflammation as the primary reason you might need a ventilator. I already covered the fact that if there are other problems going on, this may not help you.

I initially suggested treatments in response to people asking what could be done on their own if there is no medical care available or from home because I happen to know a lot about that and I'm not seeing a lot of other people speak up or provide "reputable sources" for that kind of information.

I no longer belong to any CF lists in part because I have heard the same accusations before: That providing information about what works for me is somehow irresponsible, even though CF, like covid19, is very deadly and doctors don't really know how to fix it.

Somehow, keeping my mouth shut and letting them die is deemed to be the responsible thing to do and I honestly don't understand that position at all. It really sounds much more like "cover your ass legally" than "give a damn about the welfare of your fellow human being."

I've been careful in how I have framed my remarks and given limitations and provisos as best as possible.

I stand by my two suggestions that:

1. Widespread use of ventilators may foster nasty secondary infections and I'm unhappy at seeing the world rush to provide homemade ventilators instead of rushing to provide less invasive alternatives without such a risk.

2. If you have no other options and can't get appropriate medical care, here are a few things you can try if you are desperate and have no better answers and seem likely to die if you don't do something.

I am not responsible for people choosing to use that information under less dire circumstances and I don't believe it is somehow better to deny the world such information on the theory that a few people might do something stupid with it. People are dying because there aren't enough supplies to go around. Good information can be life saving.

I don't expect my lack of happiness about the rush to create ventilators to make much, if any, real difference. But maybe it will. Maybe someone who is a medical professional will take that to heart and it will help prevent a second pandemic of antibiotic resistant secondary infections.

I'm not suggesting "giving advice can't be harmful." I'm suggesting that, under the current conditions, denying ordinary people information because they aren't medical professionals and might misuse it is likely to be worse.

[lifeisstillgood]

Consider this an anti-lump. Stored in the back of my mind is a shower based all-other-things-gone-to-hell-in-a-handbasket option. Thank you.

Keep sharing - medical best practise moves onward as well. Perhaps your experience is only effective for you, perhaps it's a viable alternative for millions. We'll science the shit out of it in the next few months no matter what :-)

[l_davis]

With all the memes flying around, it is tough to sort out what is believable or not. But coughing is apparently part of recognized therapy for CF - see https://www.cff.org/Life-With-CF/Treatments-and-Therapies/Ai... - so if you have fluid in your lung from covid 19, perhaps airway clearance techniques could help?

[DoreenMichele]

A running joke in the CF community is "Excuse me. It's time to go beat my (spouse/child)."

Manually palpating the chest to loosen phlegm to help people with CF cough it up is also a standard treatment for the condition.

[cakeface]

OK, can I just take a moment to say that cystic fibrosis sounds absolutely awful and I have a newfound horror of the disease coupled with a whole lot of sympathy for you and others who are living with it.

You are heard. I wish you only the best and I am sorry that you and others have experienced what you have.

One of the things that I am trying to maintain in the face of covid-19 is perspective. Generally this has meant that yes, something awful is happening, but that doesn't invalidate the wonderful things also happening and it's OK for me to feel joy. Now I also have some perspective that there are other absolutely horrible things and we should not minimize those either.

Sending you and yours my best hope and love.

[arcticbull]

> ...I'm still not thrilled because hospitals actively breed antibiotic resistant infections. They are a primary source.

A primary source sure, but likely nothing compared to unnecessarily dosing livestock with antibiotics, and well, large portions of India. [1] 67% of folks in India in an albeit small study exhibited antibiotic resistance.

> To be clear, I'm extremely not thrilled at the global acceptance that "we need a zillion ventilators" instead of "we need non invasive alternatives and we need to educate the world as to what they are."

Indeed.

[1] https://economictimes.indiatimes.com/news/science/most-healt...

[DoreenMichele]

Thank you for acknowledging I might have a valid point.

As for your comments about dosing livestock: That's kind of like saying "We don't need to combat rapes and robberies because murders still happen and murders are so much worse, so no point in even talking about what to do about rape and robbery until there are no more murders in the world."

I beg to differ.

[arcticbull]

Sorry if it didn't come off that way, but I agree with you haha. Both problems need to be addressed in parallel.

[DoreenMichele]

Yes.

At the moment, I would be happy if we just began promoting non-invasive ventilator alternatives. I'm very concerned this is going to turn into the biblical plagues scenario, where the first plague causes the second which causes the third, etc.

I predict one of those knock on plagues will be antibiotic resistant secondary infections, many fostered by widespread use of ventilators.

[twomoretime]

> Inflammation can be combated with commonly available non drug remedies, like caffeine, lettuce, avoiding pro inflammatory foods (avoid peanut oil like the devil himself made it for you, limit or avoid bacon as it is hard on the lungs).

This sounds like very suspicious folk advice, maybe based off a handful of data mined studies. I appreciate the tip about coughing up a lung though.

[arcticbull]

Many biologically active chemicals have been identified in nature.

Aspirin (or at least salicylic acid compounds) is in wintergreen and willow bark. Opioids are derived from poppy sap, and eating too many poppyseeds will make you test positive for opium metabolites. Digoxin for heart failure and atrial fibrillation comes from foxgloves.

Coffee, specifically, has tons of data pointing to it improving cardiovascular health including this massive meta-analysis covering 1,279,804 people [1]. This meta-analysis shows a reduction in inflammation from consuming coffee [2].

[1] https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA....

[2] https://www.ncbi.nlm.nih.gov/pubmed/28967799

[twomoretime]

I'm not denying any of that. What I'm saying is that when you randomly give a person a weak cocktail of random alkaloids and then ask them if they feel better, you're going to get a very unscientific mix of placebo and outright false information.

When you repeat such an experiment on large sample sizes with no control over the other myriad of environmental influences on the subjects, even after attempting to control for confounding factors you're still going to end up with extremely noisy data made effectively useless by just as many contradicting studies which find no effect. You see it all over the place - eggs and cholesterol, coffee harm/benefit, wine harm/benefit. These studies are all intimately highly flawed because they are empirical soft sciences with very little control over the large number of chaotic interactions among and within their subjects.

So when people say things like "drink coffee and eat lettuce to control inflammation during COVID infection" without a disclaimer, they're being [unknowingly] irresponsible, to say the least. Especially considering the dose of active compound in something like lettuce is likely to be totally insignificant.

[DoreenMichele]

I've given quite a few disclaimers already.

To repeat a few:

I'm not a doctor.

I don't have studies to cite.

I'm speaking from first-hand experience.

I don't really expect to be taken seriously.

If you are taking care of someone who could die, the most legally defensible choice is to follow medically recommended procedures. But if the medical establishment is giving you an emoji shrug and you could die because of it, that's when it might make sense to take advice from internet strangers.

[DoreenMichele]

It's "folk advice" based on many years of managing my medical condition and the medical condition of my oldest son, who has the same diagnosis.

[AstralStorm]

Please don't be silly. You cannot physically cough hard enough with dropped O2 sats like that, and even strong healthy people will be unable to fully evacuate matter from lungs, especially biofilms. Next time you propose an alternative, provide actual data supporting it. As a test, start doing it at say peak of a 2200 meter mountain. (That would be 90% with no acclimation.) See how far you can go.

Sleeping positions are irrelevant.

A positive pressure mask or cannula with O2 concentrator or supply is likely sufficient, not necessarily a full blown ventilator, and is much easier to sterilize. Still, it does carry risks. And it's the O2 concentrator part that's expensive.

[goblin89]

Reduced efficiency and inability to evacuate matter fully (which you claim) does not seem to make the method useless. Severity of the condition is likely a spectrum too.

[mannykannot]

Not all cases are worst-case. Every person who can manage, through these techniques, a symptom that would otherwise need a ventilator, reduces the demand.

[grogenaut]

What's the supply of O2 concentrators like then?

[elric]

> You can do lung clearance easily on your own in the shower by standing with your feet shoulder-width apart or a bit wider, bending over as far as you can and coughing hard.

Adding to that -- as someone with a lifetime of lung issues: physiotherapists can help you cough up fluid/phlegm from your lungs. These are called "Airway Clearance Techniques" (ACTs). Depending on where the buildup is, we may be talking breathing techniques (e.g. deep inhale, hold, huff out), percussion etc. The goal is to bring up the gunk to the upper airway so it can be coughed out. Some of these techniques are easy to learn and perform on your own.

I don't know how useful or safe these are during viral infections, but I suspect "better out than in" applies equally well to all kinds of fluid in your lungs?

[DoreenMichele]

I originally brought up airway clearance because there's a ventilator shortage. I imagine "better out than in" is absolutely a very good rule of thumb for a condition causing the entire world to try to find ways to ramp up ventilator production. Doubly so for individuals who can't get access to a ventilator, so simply getting the phlegm and fluid out is their only real treatment option and it's one they may be wholly unaware of.

[scottlegrand2]

I get bronchitis once or twice a year. The method by which I clear it is to hang upside down until the s* just comes out of me by coughing as hard as I can. That sounds awfully similar.

[DoreenMichele]

Some random shower thoughts, having just returned myself from doing lung clearance, something I've been doing a lot since we cleaned up the mold issue we had:

If you think doing lung clearance might cause actual vomiting as well, don't do it in the shower.

Instead: Get naked, stand over your toilet and cough into the toilet. Then shower before getting dressed again.

Don't skip showering. Store your clothes away from where you will be coughing/puking so they don't get blow back.

Don't assume once a day is sufficient. Doing lung clearance multiple times a day is not unreasonable during a life-threatening health crisis.

If you can't bring it up, drink something and eat something salty. This will help you cough it up.

If you roll over and it provoked a coughing fit, you probably have fluid sloshing around in your lungs. It's a good idea to attempt lung clearance at that time.

It's more or less free (though it could drive your water bill up). It just takes a few minutes. The only known side effect is breathing easier.

Okay, okay. I sometimes get dry skin from showering 500 million times. It's less annoying than not being able to breathe.

Try to not fall in the shower though. Getting bruised up would not be a good thing.

[plerpin]

I wonder if coughing on an inversion table would work.