Hurricane Isaac... and xPAP

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Kiralynx
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Hurricane Isaac... and xPAP

Post by Kiralynx » Fri Sep 07, 2012 12:08 am

I am back on line after seven mortal days with no power thanks to Hurricane Isaac taking 54 hours to come ashore and blasting the New Orleans area with 75 mph winds the whole time, not to mention storm surges of 8-12 feet or more.

I have asked many times about an emergency set up for my machine, a Bipap ASV.

I usually get "buy this and buy that and buy the other thing, and put it together." And I say "Screw it," and walk away because I am not an electrician and don't understand how to put this cr@p together. I never could find a straight answer to "What size marine deep-cycle battery do I need to run this thing for at least four nights?"

The upshot was -- I spent Tuesday, Wednesday, Thursday, and Friday nights without my machine.

I was in so much pain from the low blood oxygen levels that I was crying. The heat and humidity were horrid, but we did have battery-powered fans which helped.

I tried sleeping / dozing in my computer chair, but my back requires I lie down for a certain number of hours a day, so that did not work.

Thursday morning, I attempted to get out of bed and the pain was so fierce I could not stand. More correctly, I attempted to stand, and almost fell. I ended up grabbing the Superpole by my bed and easing myself back onto the bed. My husband had to bring me my cane before I could manage to get up and hobble to the bathroom.

I should note that Entergy is in the Dark Ages when it comes to xPAP. According to them, the fact that I stop breathing at night without my machine does not constitute a life-threatening emergency.

Apria says that a battery is "not medically necessary" and that insurance will not pay for one.

My Dad got power back on Saturday, so we moved over there. We finally got power back on Monday, and got back in our own bed last night. I'm so exhausted, I can't see straight.

CPAP.COM was very helpful in telling me that a 79 AH battery would probably work decently, but unfortunately, no place that was open (due to 900,000 customers without power) had such a battery, and no one was delivering to us.

This is the first storm I've attempted to weather since getting my BiPap almost four years ago.

I do not know what we will arrange, or how we will afford it, but I will not go without my machine again. The cost is simply too severe.

_________________
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece
Additional Comments: Sleepyhead software, not listed. Currently using Dreamstation ASV, not listed
-- Kiralynx
Beastie, 2008-10-28. NEW Beastie, PRS1 960, 2014-05-14. NEWER Beastie, Dream Station ASV, 2017-10-17. PadaCheek Hosecover. Homemade Brandy Keg Chin Support. TapPap Mask.
Min PS = 4, Max PS = 8
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kteague
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Re: Hurricane Isaac... and xPAP

Post by kteague » Fri Sep 07, 2012 12:36 am

Oh Kiralynx, I hate hearing that you've had to go through this. I know you've said in the past how important your sleep is to your pain levels. I do hope you find some resolution so that any future power loss wil not cause you so much suffering. (Gentle Hug)

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greatunclebill
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Re: Hurricane Isaac... and xPAP

Post by greatunclebill » Fri Sep 07, 2012 7:16 am

Kiralynx wrote: Apria says that a battery is "not medically necessary" and that insurance will not pay for one.
apria is a supplier. they don't get to decide and shouldn't have an opinion. medical necessity starts with you getting your doctor to say it is medically necessary to the insurance company in the form of an authorization for care request. apria stands nowhere in that approval/disapproval process and should not even be consulted. their job is to provide services when requested by the doctor and approved by the insurance company. do not trust what apria or any other dme tells you.

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123.Shawn T.W.
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Re: Hurricane Isaac... and xPAP

Post by 123.Shawn T.W. » Fri Sep 07, 2012 8:12 am

This is about as simple as your gonna find ... Plug it into the wall (or cig lighter) to charge

viewtopic.php?f=1&t=64943&st=0&sk=t&sd=a
"I am a man of peace, but if war comes to my door it will find me home." - Winston Churchill

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Kiralynx
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Re: Hurricane Isaac... and xPAP

Post by Kiralynx » Fri Sep 07, 2012 11:31 am

123.Shawn T.W. wrote:This is about as simple as your gonna find ... Plug it into the wall (or cig lighter) to charge

viewtopic.php?f=1&t=64943&st=0&sk=t&sd=a
Yeah, and it's a 22 AH, and I'm told I need at least 79.

_________________
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece
Additional Comments: Sleepyhead software, not listed. Currently using Dreamstation ASV, not listed
-- Kiralynx
Beastie, 2008-10-28. NEW Beastie, PRS1 960, 2014-05-14. NEWER Beastie, Dream Station ASV, 2017-10-17. PadaCheek Hosecover. Homemade Brandy Keg Chin Support. TapPap Mask.
Min PS = 4, Max PS = 8
Epap Range = 6 - 7.5

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Kiralynx
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Re: Hurricane Isaac... and xPAP

Post by Kiralynx » Fri Sep 07, 2012 11:39 am

greatunclebill wrote:
Kiralynx wrote: Apria says that a battery is "not medically necessary" and that insurance will not pay for one.
apria is a supplier. they don't get to decide and shouldn't have an opinion. medical necessity starts with you getting your doctor to say it is medically necessary to the insurance company in the form of an authorization for care request. apria stands nowhere in that approval/disapproval process and should not even be consulted. their job is to provide services when requested by the doctor and approved by the insurance company. do not trust what apria or any other dme tells you.
The local Apria has refused to fill scripts before if they deem them "medically unneccessary."

The insurance, at that time, backed them up, saying that Apria knew what I needed and I should be guided by them.

_________________
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece
Additional Comments: Sleepyhead software, not listed. Currently using Dreamstation ASV, not listed
-- Kiralynx
Beastie, 2008-10-28. NEW Beastie, PRS1 960, 2014-05-14. NEWER Beastie, Dream Station ASV, 2017-10-17. PadaCheek Hosecover. Homemade Brandy Keg Chin Support. TapPap Mask.
Min PS = 4, Max PS = 8
Epap Range = 6 - 7.5

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Kiralynx
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Re: Hurricane Isaac... and xPAP

Post by Kiralynx » Fri Sep 07, 2012 11:44 am

kteague wrote:Oh Kiralynx, I hate hearing that you've had to go through this. I know you've said in the past how important your sleep is to your pain levels. I do hope you find some resolution so that any future power loss wil not cause you so much suffering. (Gentle Hug)
Thanks, Kathy. I actually got a half-way decent night's sleep last night, but it's gonna take a few more to recover from a week of abusing the body, even if the abuse wasn't intentional.

All I can say is -- the people who think they are going to take a vacation and "not bother" to take their xPAP with them because it would be "too much trouble" are stark, staring out of their freaking MINDS.

I have overt evidence of the effects of low oxygen on my body -- the pain. But what about the subtle stuff that most people aren't aware of?

_________________
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece
Additional Comments: Sleepyhead software, not listed. Currently using Dreamstation ASV, not listed
-- Kiralynx
Beastie, 2008-10-28. NEW Beastie, PRS1 960, 2014-05-14. NEWER Beastie, Dream Station ASV, 2017-10-17. PadaCheek Hosecover. Homemade Brandy Keg Chin Support. TapPap Mask.
Min PS = 4, Max PS = 8
Epap Range = 6 - 7.5

Guest

Re: Hurricane Isaac... and xPAP

Post by Guest » Fri Sep 07, 2012 12:01 pm

Kiralynx wrote:
123 Shawn TW. wrote:This is about as simple as your gonna find ... Plug it into the wall (or cig lighter) to charge

shawns link removed
Yeah, and it's a 22 AH, and I'm told I need at least 79.
lets start with what voltage do you need? if its 12v then shawn is right you wont find a much simpler setup. that should give you 1 nite maybe 2 maybe 3, so you will have something not every storms lasts 4 days not every outage goes overnite but you will be able to sleep

thats not enough for ya? then connect another battery size of your choice to the jumper cables and voila that will make the same setup last even longer. you cant and wont get much simpler than that. if that is too much you need to hire someone just show them the link.

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brucifer
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Re: Hurricane Isaac... and xPAP

Post by brucifer » Fri Sep 07, 2012 12:09 pm

I lived in New Orleans for many years and still have family in the Slidell area, so I feel for you. During hurricanes, I always hated the inevitable power outages and the muggy, thick humidity that hung in the air and remained long after the storm had left. I often wondered how people survived in southeastern Louisiana in the days before electricity.

Anyway, I hope you find a viable solution for your power needs. Have you considered a purchasing a portable generator? I know it's a bit of an investment, but they are simple to operate, and you could connect your xPAP machine to the generator using an extension cord.

I just did a quick check on ebay, and you could get a decent generator (2 hp/1200w) for about $130, and that includes free shipping. It's definitely worth having something like that on hand.

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123.Shawn T.W.
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Re: Hurricane Isaac... and xPAP

Post by 123.Shawn T.W. » Fri Sep 07, 2012 12:15 pm

Kiralynx wrote:
123.Shawn T.W. wrote:This is about as simple as your gonna find ... Plug it into the wall (or cig lighter) to charge

viewtopic.php?f=1&t=64943&st=0&sk=t&sd=a
Yeah, and it's a 22 AH, and I'm told I need at least 79.
Well here is one with 44ah http://www.asedeals.com/jumpstarters2.html

If you go down about half a page you can find the comercial size ones where all you gotta do is add your own two big batteries ... Of course spending that kinda of money you mights well buy a Honda EU2000i generator and keep your fridge going all night too! $999 was what I paid for mine this past spring!

This is where I bought mine from http://www.wisesales.com/eu2000ia-honda ... Eo5Y4l5nTo they also make a smaller one, but the price is not that much less, and would not start your fridge ...

The problem with cheap made in china generators are that's what they are! They do not provide clean consistent power, stick with an invertor type both Honda and Yamaha have good reputations and long life, Honda's have been known to exceed 25,000 hours of use, yes the same model little EU2000i that I have, is why I bought it!
Last edited by 123.Shawn T.W. on Fri Sep 07, 2012 12:33 pm, edited 3 times in total.
"I am a man of peace, but if war comes to my door it will find me home." - Winston Churchill

Guest

Re: Hurricane Isaac... and xPAP

Post by Guest » Fri Sep 07, 2012 12:17 pm

your neighbors would hate you maybe even choke you if you ran a generator all nite. generator is fine for daytime needs but a battery is the way to go for sleeping needs

123.Shawn T.W.
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Re: Hurricane Isaac... and xPAP

Post by 123.Shawn T.W. » Fri Sep 07, 2012 12:23 pm

Guest wrote:your neighbors would hate you maybe even choke you if you ran a generator all nite. generator is fine for daytime needs but a battery is the way to go for sleeping needs
Some generators ... Yes!

But I can carry on a conversation next to mine while it is running! With the cord in the sliding glass door, we can't hear running, while we are inside!

These are made primarily with the camper in mind and have to meet certain decibel requirements ... Obviously campgrounds don't allow noisy ones to run all night!
"I am a man of peace, but if war comes to my door it will find me home." - Winston Churchill

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brucifer
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Re: Hurricane Isaac... and xPAP

Post by brucifer » Fri Sep 07, 2012 12:29 pm

Guest wrote:your neighbors would hate you maybe even choke you if you ran a generator all nite. generator is fine for daytime needs but a battery is the way to go for sleeping needs
My neighbors would be running their own generators or asking to run a cord to mine. They have freezers, air conditioners, and other appliances that they want to keep running 24/7. If you had ever been through a post-hurricane event with NO AVAILABLE POWER, you would know that what I am saying is true. A dedicated power generator makes perfect sense in Kiralynx's situation.

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Re: Hurricane Isaac... and xPAP

Post by Guest » Fri Sep 07, 2012 12:43 pm

brucifer wrote:If you had ever been through a post-hurricane event with NO AVAILABLE POWER, you would know that what I am saying is true.
I have which is why I said what I said

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Hawthorne
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Re: Hurricane Isaac... and xPAP

Post by Hawthorne » Fri Sep 07, 2012 12:50 pm

I glaze over and understand nothing about battery backup as discussed on this forum. I had an old Respironics battery backup for several years. It worked well but my RA is worse and it is too heavy for me now.

This summer I bought a Super CPAP Battery Pack. it is a Li-ion battery. It weighs about 2 lbs and is a neat rectangle - maybe 10" by 6" by 1/14" deep. I got the 222 size. It comes with a charger. The charge needs to be topped off every 2 to 3 months when not in use. You need to charge it if you have used it of course. You need to buy, in addition, the right DC power cord for your machine. I use the Intellipap AutoAdjust but I believe it will work with most machines as long as you have the right DC cord. It will last me 3-4 nights without humidity. I use passive humidity most of the year so that is not a problem for me. My machine is in auto mode set at 11 to 13 cm. It is very quiet - virtually silent to me.

It cost just under $500 but it is worth all of that and more to me. We don't have frequent long term blackouts but several short power outages (several hours long) fairly often. I have a lot of RA pain and need my sleep to cope with it.

The Battery Pack is not covered by insurance since, as has been said, it is not considered a medical necessity. You MAY be able to make a case for it being covered. I have not tried.
Now that things are back to normal, talk again to cpap.com, get in touch with "Battery Geeks" or search this Super CPAP Battery Pack on the net and look into this simple setup. I did not buy my battery pack from cpap.com (I don't think they carry this one) but they helped me with the right DC cord which I bought from them. I bought the battery pack itself from a Canadian supplier so you may get it cheaper.

I don't know how helpful that is to you but pass it on anyway.

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