Question for the Wisdom of the Group on Power Failures

[ragtopcircus]

I see two alternatives..
1) get a bigger battery...
2) imagine more humidity.

Alternative #2 is exactly what I’m trying to use right now. Switching from pillows to full face helps a little.

[palerider]

I see two alternatives..
1) get a bigger battery...
2) imagine more humidity.

Alternative #2 is exactly what I’m trying to use right now. Switching from pillows to full face helps a little.

How'd that imaginary dampness do for you?

[ragtopcircus]

I see two alternatives..
1) get a bigger battery...
2) imagine more humidity.

Alternative #2 is exactly what I’m trying to use right now. Switching from pillows to full face helps a little.

How'd that imaginary dampness do for you?

I feel pretty good today ... for a mummy that’s been run over by a truck. Xlear Max nasal spray (capsaicin, xylitol, saline) helped a little. Apparently I have a very dry imagination.

[Jack Burton]

Hmm. https://www.travelscoot.com/air-travel- ... y-scooter/ This page may have some of documentation needed.

This document https://www.travelscoot.com/assets/pdf/ ... -Sheet.pdf indicates the voltage as 25.2.

[RobertS975]

Well, well... looks like more than a million Californians are having their electricity shut down deliberately by PG&E to prevent wildfires! And this appears to be a prolonged outage!

https://www.usatoday.com/story/news/nat ... 916848002/

https://abcnews.go.com/US/wireStory/mil ... a-66152633

[Gryphon]

I too feel that after years and years of successful treatment that I'm at a significant higher risk of critical adverse consequences if I were to suddenly be with out my machine for any duration of time.

I do find it very frustrating that we can't talk about insurance or anything with out a bunch of people losing their minds and going on a political rant about conservative vs liberal views.

What is the harm of knowing if something is true or not? If it were proven that after years of successful treatment that there is a significant risk of permanent medical impairment or death if PAP treatment is taken away this could help with a lot of situations. If insurance companies want to cover it or not is beside the point. If it's proven true and insurance companies do have to cover it then "OMG We're all DOOMED!!!!" , what ever.

What if you were taken to jail and were not allowed to have your PAP machine? (this happens a lot buy the way) If it was known that there is serious medical significance to with holding PAP treatment regardless of the reason this would be important to know right? If people were told that if they lose power and can't use their machines, some of them might be at a very serious risk of a life altering cardiac event or even death they might "Plan a little better" and take their condition a bit more seriously. It's not scare mongering if it's true darn it!"

Regardless of who has to pay for it... knowing the science and facts shouldn't be something we fight against. The OP stated in a later post that it would be possible to gather information and statistics on people in given areas, who use PAP... if you see a significant up tick in the number of people admitted to the hospital or the morgue for an event that could be related to untreated Apnea in the days following a power outage, then DUUUUUU!!!! that would indicate not having your PAP after using it for a prolonged time might be a problem that should be considered by some one at least.

Maybe make it so if the patient has a reasonable talk with their doctor and the doctor recommends it insurance could help, or at least people could be informed of the facts that their Apnea isn't a joke and that they shouldn't just shrug and figure well I had it before and it didn't kill me, I'll be fine.
"what's a few days with out cpap", or
"I don't really feel like lugging this extra bag with me when I go on vacation, it's such a hassle, I'll just go with out, what's the harm?"

If we knew with proven medical information that not treating your apnea after successful treatment is dangerous then it would dispel some of the common misconceptions about this issue.

I just wish we could talk about some of these things with out it always devolving into a heated argument over politics... Sigh.
I don't give a darn about your political views... facts are facts... if you can get the science done to show it. If you think the studies are all biased garbage then talk about that, but not just that, talk about how you think the studies should be done better so they're not biased.

We should be able to discuss things like reasonable adults with out making everything into a (ether or) I want big government to pay for everything, how dare you expect insurance to cover stuff... you entitled horrible person, you'll make my premiums sky rocket, argument.

Best of luck,

Rest well,

Gryphon

[RobertS975]

I too feel that after years and years of successful treatment that I'm at a significant higher risk of critical adverse consequences if I were to suddenly be with out my machine for any duration of time.

I do find it very frustrating that we can't talk about insurance or anything with out a bunch of people losing their minds and going on a political rant about conservative vs liberal views.

What is the harm of knowing if something is true or not? If it were proven that after years of successful treatment that there is a significant risk of permanent medical impairment or death if PAP treatment is taken away this could help with a lot of situations. If insurance companies want to cover it or not is beside the point. If it's proven true and insurance companies do have to cover it then "OMG We're all DOOMED!!!!" , what ever.

What if you were taken to jail and were not allowed to have your PAP machine? (this happens a lot buy the way) If it was known that there is serious medical significance to with holding PAP treatment regardless of the reason this would be important to know right? If people were told that if they lose power and can't use their machines, some of them might be at a very serious risk of a life altering cardiac event or even death they might "Plan a little better" and take their condition a bit more seriously. It's not scare mongering if it's true darn it!"

Regardless of who has to pay for it... knowing the science and facts shouldn't be something we fight against. The OP stated in a later post that it would be possible to gather information and statistics on people in given areas, who use PAP... if you see a significant up tick in the number of people admitted to the hospital or the morgue for an event that could be related to untreated Apnea in the days following a power outage, then DUUUUUU!!!! that would indicate not having your PAP after using it for a prolonged time might be a problem that should be considered by some one at least.

Maybe make it so if the patient has a reasonable talk with their doctor and the doctor recommends it insurance could help, or at least people could be informed of the facts that their Apnea isn't a joke and that they shouldn't just shrug and figure well I had it before and it didn't kill me, I'll be fine.
"what's a few days with out cpap", or
"I don't really feel like lugging this extra bag with me when I go on vacation, it's such a hassle, I'll just go with out, what's the harm?"

If we knew with proven medical information that not treating your apnea after successful treatment is dangerous then it would dispel some of the common misconceptions about this issue.

I just wish we could talk about some of these things with out it always devolving into a heated argument over politics... Sigh.
I don't give a darn about your political views... facts are facts... if you can get the science done to show it. If you think the studies are all biased garbage then talk about that, but not just that, talk about how you think the studies should be done better so they're not biased.

We should be able to discuss things like reasonable adults with out making everything into a (ether or) I want big government to pay for everything, how dare you expect insurance to cover stuff... you entitled horrible person, you'll make my premiums sky rocket, argument.

Best of luck,

Rest well,

Gryphon

Gryphon, as the OP, I feel that I made an error in bringing up the potential insurance ramifications to my hypothesis. It was really just a minor offshoot to my larger point and it seemed to sidetrack a lot of the discussion. My larger supposition that even a brief interruption of long established successful therapy could potentially be far more dangerous than either we, the patients, or the medical establishment actually appreciate. As I have said, as a physician and a patient, I have personally done a complete about face on this issue. Whereas I used to point out to patients that they had suffered from OSA for years or even decades before they were diagnosed and that a day or two without therapy due to electrical outages caused by storms etc wouldn't likely be of any consequence, I now feel that the body's physiologic adaptations to nightly apnea which get established after years with the condition are no longer operative after many months or years of successful therapy.

If this supposition is indeed true or partially true, it should change the way we go about our business. For example, I have a machine at more than one home. If I am flying from one home to the other, I don't carry a travel machine. What if my flight is diverted or I miss a connection and fail to reach my machine. How dangerous is that one night in a hotel without a machine? What is the risk of red-eye flights without therapy. Maybe we should avoid them completely! I hadn't thought about prisons to be honest. How dangerous is a weekend camping trip? Or an overnight boat trip?

So I am sorry I got so many us sidetracked about insurance. But the marketplace is often an efficient entity, and backup power solutions, if they were to become de rigueur and commonplace, would become far more efficient and less expensive to own. So any of us who know sleep MDs in medical center or academic practices should challenge these physician scientists to examine the question and seek the answers.

[Gryphon]

I find the problem with a lot of discussion not just this forum but all forms of community communication is the prevalence of a unconscious gatcha mentality.

You posted a thoughtful well written post about how you felt and your thoughts about a possible issue with apnea that I think would be important to get people's feedback on.

But....... you mentioned insurance and the possibility that they might need to pay for something if what you think is found to be true.

"Gatcha!!!! Ponce on the insurance issue and everything you said is thrown on the wood pile to be burned at the stake of public outrage... never mind the whole point of your post that untreated sleep apnea if after prolonged treatment might be dangerous and get you killed. Were going to focus our attention on the logistics of who should pay for a backup plan for people and forget the whole point of wether its dangerous or not and how we could go about finding out.

Sill think we should be able to talk about an issue with out cherry picking a sentence and making that the crux of everything you said when it's just an afterthought.

How about we talk about how everyone feels about if apnea is more or less or about the same, risk wise, if it has been treated for a long time or not, and let the ramifications of that knowledge work it self out if we need to start paying for batteries or generators for people once we know more... hmmm?

If you still want to make it so insurance doesn't pay a dime for someone's backup system that's fine, I dont really care, but let's try and debunk the idea that you can go with out your machine for a few days with no long lasting impact, if it happens to not be true.

We still have people logging on to this forum to ask us if it's ok to leave their PAP at home for a trip because they think it's too much trouble to take with them and the consequences won't really matter... is that true or not? How many people on this forum feel confident in telling someone "Sure! Leave your PAP at home, it's no big deal" I dont see that advice being handed out very much. So I feel the same holds true for is it ok to just sleep with out it if I dont have electricity. If you wouldn't tell people to do it... then....

The fact we have people who have to even ask us some of the questions they ask tells us all that education level of the average PAP user and even the doctors who are supposed to be serving them and us is sorely lacking and a little established knowledge about the dangers of untreated apnea even for those of us who regularly treat it cant hurt. If because of that change in understanding insurance companies have to provide coverage for a battery or some other system to maintain accessibility to a covered device, then so be it.

If its shown to be that darn important then it should be covered. But let's get there first. Do the science and find out if people are being injured or killed when their PAPs are taken away due to power outage or some other circumstances that may or may not be with in their control. Then you can provide that education to the public and let them decide or let the insurance companies decide how ever you like it, but foremost make sure the end user knows if its dangerous or not.

Restwell,

Gryphon

[ChicagoGranny]

But the marketplace is often an efficient entity, and backup power solutions, if they were to become de rigueur and commonplace, would become far more efficient and less expensive to own.

Excellent!

The market for user-paid CPAP backup power is already headed in that direction. In the eight years I have been using CPAP, new backup systems have been introduced at an accelerating rate, quality has been improving and prices have been falling. https://www.google.com/search?q=backup+ ... e&ie=UTF-8

For many of us, myself included, backup plans for power loss are very important.

[RobertS975]

Another important adjustment that we would need to make if the supposition is indeed true for pillow or a nasal mask users is to be sure that where ever we are, we have access to a full face mask in the event of an upper respiratory tract infection. I have used nothing but a p10 or n30i for 5 years straight, miraculous for me but true. Usually, but not always, on a longer trip I will pack a full mask just as a precaution. Shorter trips under a week...not likely to bring a face mask. That will change. Who knows!? Perhaps the risk of a treated patient interrupting their treatment for even a single night is far higher than the risk incurred by an untreated, undiagnosed patient over the course of an entire year! I can certainly postulate a physiologic mechanism why this might be true.

[palerider]

Another important adjustment that we would need to make if the supposition is indeed true for pillow or a nasal mask users is to be sure that where ever we are, we have access to a full face mask in the event of an upper respiratory tract infection.

Why?
I haven't been unable to open up my nose at night... ever. The only time I've used my FFM was when I had a NG tube up my nose in the hospital

[Pugsy]

Another important adjustment that we would need to make if the supposition is indeed true for pillow or a nasal mask users is to be sure that where ever we are, we have access to a full face mask in the event of an upper respiratory tract infection.

Why?
I haven't been unable to open up my nose at night... ever. The only time I've used my FFM was when I had a NG tube up my nose in the hospital

And I don't even own a full face mask.

[palerider]

Another important adjustment that we would need to make if the supposition is indeed true for pillow or a nasal mask users is to be sure that where ever we are, we have access to a full face mask in the event of an upper respiratory tract infection.

Why?
I haven't been unable to open up my nose at night... ever. The only time I've used my FFM was when I had a NG tube up my nose in the hospital

And I don't even own a full face mask.

I know, after you shipped the two donated FFMs down here for my friend

[crab-legs]

Pack your cpap with a couple extension cords.

You are not supposed to use an extension cord:

http://incenter.medical.philips.com/doc ... D11405972

page 7:

"Supplying AC Power to the Device
Complete the following steps to operate the device using AC power:
1. Plug the socket end of the AC power cord (included) into the power supply (also included).
2. Plug the pronged end of the AC power cord into an electrical outlet that is not controlled by a wall switch.

[...]

Caution: Do not use extension cords with this device"

[crab-legs]

Supposedly, all CPAP units already have back-up batteries built in, according to this tweet about California's PG&E planned power shut-off (PSPS) to prevent wild fires:

https://twitter.com/kurono_alien/status ... 344740353

"CPAP machines do have batteries just in case the electricity goes out and oxygen tanks are portable. It’s more difficult but it is not impossible to have working equipment without electricity."