Brentt
Active member
- Joined
- Oct 7, 2006
- Messages
- 55
- Reason
- PALS
- Country
- US
- State
- florida
- City
- naples
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
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