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Brentt

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:confused: I was put on a bipap shortly after my breath weakened .I would lay on my side at night and my lungs would'nt fill all the way with air.I felt like I had a big python wrapped around my chest because it was so hard to breath .My doctor sent me to his associate that studies respiratory .They did a vital capacity study ( you blow into a tube as hard as you can for as long as you can ). I was at a 89 % at that time and they gave me a bipap as a loner .I started to use it at night so I could breath and sleep through the night .It didn't take much time getting used to it .The feeling of a full chest of air was life giving.I went to another respiratory doctor that was closer to me and they wanted to do a sleep study .I didn't really want to go because all I really needed at the time was to increase the pressure in my bipap.I tried to do it myself and goofed it up so that's why I went to a different doctor.The sleep study is needed for medicare to cover the cost of a bipap and if you have a low oxygen level during the study then they provide the funds . The problem with some of the respiratory doctors is that they don't specialize in ALS so if they are only concerned in your oxygen levels they may not even understand what's happening to your lungs.As they weaken the small sacks of air that are everywhere start to close and once they do they won't reopen again .the capacity decreases but that doesn't mean that you're not getting enough oxygen .The biggest mistake that the doctor will make is to provide oxygen an d that can lead to death.
How do I know that ? Well too much oxygen can kill you everyone knows that .so if the aveoli continue to shrink and you supersaturate the lungs with oxygen what happens ?
DEATH!
This exactly what happened to a gentleman that I purchased a van from .
His wife received a settlement and this por guy could still walk ,talk and eat .If he had gone to the right doctor he would still be here .
His lungs got weak and once they put him on oxygen he didn't last for even 6 months .
Please I urge you to get on the phone and contact the ALS community in your area if you are having these kinds of problems and get the names of good certifiable doctors that know what needs to be done .And those of you that have weak lungs just ask yourselves if a tiny little stream of oxygen in your nose is going to give you a full breath of air . Heck no it won't .
We all have a fight on our hands and sometimes it requires some initiative .
I'm scared but I now know that I am doing everything possible to live in comfort for as long as I can .
It feels good to look at a doctor and say I think I'll get a second opinion.
I got a folder from my local ALS chapter and it has all kinds of information in it .It also gives names and addresses of important things that can help .I use it every time I have a question or need to find something .I would be happy to help if anyone is interested.
Brentt
 

Al

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What you are saying is mostly correct Brentt. If anyone of us needs 911 for breathing issues the first thing they will do is slap an oxygen mask on you. You and your family and friends need to know that this can be harmful and even cause death for a breathing compromised patient. A sleep study is needed if you are having shortness of breath on laying down. A low FVC is another issue and does not mean that you need a Bipap. There are 2 different mechanisms at work here. With ALS the muscles in the chest and diaphram weaken and even though the lungs may be healthy there is not enough air moving in and out. This is usually when you need a Bipap and the sleep study tells you what your O2 and CO2 Levels are which are a function of how much air is going in and out. The Bipap just pushes more air in and usually the only time oxygen therapy is used is when you have pneumonia. This needs to be monitored closely. Adjusting your own Bipap could be conidered attempted suicide in some venues. It is just absolutely not done. The RT and Respirologist were adamnant on that issue.
 
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joelc

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WOW, I am not understanding something here, maybe someone can explain it to me in laymans terms.

Brentt said he was having trouble breathing at 89% and went on a bipap. The symptoms he talked about are the same as mine and I am currently less than 30% and just now got a bipap. I am still struggling to get used to it so use it for short (uncomfortable) periods only so far.
I would consider 89% close to normal, I must be missing something in the way FVC is determined for each person.
Does anyone understand what I am asking and give an answer?

Any attempt at clearing up my confusion would be appreciated. I hope there are others who have the same question, or am I the only one who doesn't know?
Thank You
 

davis07

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bi-pap

My fvc was 45 when they put me on bi-pap,they told me
my insurance wouldnt pay unless it was below 50. I could
have used it away before I went for along time having to
lay on my side, then that didnt work when it got below 50.
Also I think 85 would be about normal. Does anyone no
how long the bi-pap will keep your breathing going.

Davis 07
 

Al

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In May of last year my FVC was 78. Last month it was 80. FVC takes into account your age, height and weight to determine a predicted value and then the % they give you is the percent of the predicted value of that group compared to what you actually blow. I've had my Bipap 2 years now and I'm not sure what my FVC was then but do know from my sleep studies that my O2 level was down in the 80's and my CO2 was up around 50% which can be real detrimental to your health. I was having trouble breathing unless I was on my side while sleeping too. Some people on here are on Bipap 24/7 and are doing fine. I'm not sure what the criteria for venting is. Hope this helps.
AL.
 

quadbliss

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Brentt brought up a good point. When your FVC is decreasing, and/or you are on Bi-Pap, your lungs never inflate all the way. Over time, this causes your chest walls to constrict, further reducing your lung capacity. You can increase the time a Bi-Pap is effective for you by doing daily "stack breathing" treatments. We had a special ambu-bag with the exhalation port plugged. Jen would then pump several squeezes of air into my lungs until my chest was hyper-expanded. Using this method, my lungs remained open, my chest walls retained elasticity, and I was able to postpone venting for two full years by using 24/7 Bi-Pap.

Mike
 

davis07

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bi-pap

Thanks for the replys on bi-pap. I saw on the news also net
were they are starting the diaphragm pace makers on
some , als patients. Can read about it at diaphram breathing als
on net. They are doing it at the Cleveland clinic.

Davis07
 

joelc

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I got my bipap last Monday (Mar 19th) and got a lesson on how to use it from the RT that brought it. Very uncomfortable! Tried several times throughout the week to use it but found the mask did not seal and rubbed so used it for a few hours at a time and ignored it for several days.
Last night I persevered and used it all night - SUCCESS!

But today my worst fear was realized. I got within several miles of work and had to turn around and go home - I could not breath. I really thought my time was up and I would not make it home - as you can see I did. So now life makes a major change several weeks before I can afford it to - I need to unload my business and the process is still weeks away!

My fear was that once my system got used to the bipap it would shut down and require it - that seems to have happened overnight - literally. Has anyone else noticed, or experienced, this?

Has anyone heard of a portable, battery powered, bipap? All the health care people I have talked with say there isn't one. Vents are battery powered but bipaps are not. I find this hard to believe.

Any thoughts and advise is greatly welcomed!
God bless us all!
 

Al

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Hi Joel. I've never heard of someone becoming dependent on the Bipap over night like that. I have seen a battery backup for one model of Bipap. Here is one of the websites.
http://www.cpap.com/simple-find-cpap-products/cpap-battery-cable I use a portable battery pack called the Eliminator from Canadian Tire. It runs my machine for about 7 hours and was around $100. I don't use the humidifier with it then. Hope this helps.
AL.
 

lunarruna

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Joel....so glad you got the Bipap and are getting used to it.
As for the breathing trouble without it now, I kind of know what you mean...happened to my husband pretty fast because he got the Bipap very late...but we feel like once he got the Bipap he realized how horribly hard he had been trying to breathe and how compromised he was. So without it, it scared him to be gasping so again, even though he had been like that for a few months. Maybe something else was going on with you, hard to say.
There are other posts in here where we have talked about making Bipaps portable...do a search on Bipap and see what comes up , but there are many websites where you can get adapters to run off of wheelchair or marine batteries, and also cigarette lighter adapters. WHat kind of Bipap do you have? Also if just do a search on the web on 'Bipap' you will get to some of the main sites and then look on the sites for battery and adapters.
Good Luck....Beth
PS. Now my husband Shannon only lets me take off the Bipap for about 5 minutes max to clean his nose and change masks! He has been on it since October.
 

davis07

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bi-pap

You can get a converter to run your bi-pap of cig. lighter
on car at wal-mart were we got mine. It is 400 watt-800 watt peak
dc to ac power inverter. Its about 90 dollars works great for trips.

Davis 07
 

barbaraW

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Mar 30, 2007
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PALS
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US
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CA
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Danville
recommendations for bi-pap

this is a perfect thread for me as I was 'approved' to get a bi-pap Wednesday.

Are there any recommendations you have for me as to:
-what I should ask the vendor for (specific brand or accessory?)
-Best way to get used to but not dependant on it?
-anything else that I can't think of to ask?

My fvc was 62% but I guess I qualified by the sucking test..(not sure what it is called...)

thanks!
 

Al

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Hi Barbara.Welcome to the forum. If you go to the top of the page here and type bipap into the search field there are a few topics related to the questions you are asking. AL.
 
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