[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.

[DoreenMichele]

Yes, it's classified as a Dread Disease because of what it does to your entire life, not just your health and body.

Thank you for your kind words and good intentions.

But please note that there are good things in my life as well. The past decade or two have been pretty darn hard, but it's not all downside.

And because I have CF, I already do remote work and live like a germaphobe. So the pandemic is, so far, kind of an annoying inconvenience. And I'm trying to figure out how to provide solutions, such as:

https://writepay.blogspot.com/2020/03/textbroker-and-covid19... (which I posted to HN and it got no traction)

And: https://stoptouchingyourface.blogspot.com/

In my experience, people feeling sorry for me doesn't pay my bills, doesn't get me any real respect, doesn't get my writing taken seriously or get me traction, etc.

If you are really sorry for what I have been through, then help me make all that suffering mean something. Help me get the word out and get some traction and make a difference.

Turn all those years of suffering into a learning opportunity for the world, not one more reason for everyone on the planet to hate me, treat me like I'm pathetic and generally ignore me and the things I have to say.

Make my pain make a positive difference in the world instead of just being a private burden.

[l_davis]

I looked at the writepay link, and then the textbroker site. They said that they paid between $4 and $8 per assignment. Is that true? How long does an assignment take?

[DoreenMichele]

The pay varies, depending upon the word count and other variables.

How long it takes also varies.

When I started working for them, I sometimes made like $1.25/hour because I was homeless and deathly ill and blah blah blah and it would take me all afternoon to complete something wroth $5.

Eventually, I was making more like $15-$20/hour.

Something I wrote previously on the topic:

https://writepay.blogspot.com/2016/03/the-value-of-not-chasi...

You do need to work at it and get good at it, but it can become a middle class income. I was clear it had a lot of potential upside when I began and it worked within the restrictions I had, so I kept working at it and slowly getting better.

I absolutely haven't yet hit any kind of ceiling. I could still work longer hours, increase my rating, etc. There is still a lot more money I could make. It's just up to me to make that happen by getting healthy enough, arranging my life that way, etc.