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KinzaDAF

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Illinois
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My dad had his first appointment this morning with his new doctor, and we learned that his FVC resp rate is only 62%. ( My sister went along for this appointment and has shared this info with me. ) There was some talk of getting Dad a BiPap but it wasn't *pushed at this point. What are peoples' thoughts on when BiPap is needed? I know Dad isn't moving enough air and probably is easily tired, but where does the 62% FVC rate "put him" with his ALS? I'm worried about him.

Debbie
 
I'd be getting the Bipap now. It's harder to get used to when your FVC gets low. Mine was 86% when I needed my Bipap. I couldn't get enough air in lying flat. On my side was better but after getting the Bipap in Jan. 05, I was much better.

AL.
 
I second that ... my FVC is 57% and I use a BiPap ... get it before you need it and maybe stick around just that much longer.
 
they want to come and set me up on thrursday for a bipap called out of the blue. the doctor said I was good?!?
 
Yes, the sooner the bipap, the better. You don't have to use it all the time, but maybe just a few hours here and there. You'll know when it's time to increase its use. Also gives you time to find a mask that is compatible with you. Blessings, Pam
 
Mine was down to 50% at my last LFT when I was in hospital last , a big drop down from my last LFT befor that , earlier in the year . I was tried on bi-pap next day but it was decided unsafe for me , I get jaw clamps , have excess drooling , and , as I live alone , there would be nobody there to get the mask off and on as I can't do it . I was told that my resp team like to get the bi-pap up and running on patients before it's really urgently needed , and like to start around 70-60%
 
I was down to 55% at my last clinic appointment. Unfortunately my insurance company pays $750 yr on medical equipment. The first company said that the rental was $600 per month, found another company, the one husband's cpap is from who will charge us $250 month until we get to $3,000 the cost of the machine. We will use the $750 from the insurance against this too.
I was turned down twice for Medicare coverage because I haven't worked in the last ten years and am only 54 so don't qualify by age.

My husband has a cpap and had to do a sleep study to calibrate it. How does it work with bipap?
 
They took my cpap settings and set my bipap without another sleep study.

Ask them to make sure they have the correct number of breathes per minute set on the machine. It just makes it easier to adapt to.

I only sleep with mine.

Glen
 
Get the Bipap as soon as you can.

Tich1 - can you not use nose pillow mask?
 
The difference between cpap and bipap is that the cpap machine is set to mechanically produce x-number of breaths per minute, while the bipap "enhances" your own breathing pattern. The cpap is for people who actually stop breathing while asleep; the bipap is for people with weak breathing muscles.

If you hold your breath with a bipap, the bipap will "hold its breath" also, and not breathe again until you do. It is intended to take over the work of your diaphragm and other muscles that move your lungs, and allow them to rest.

Some bipaps also come with a "back-up" feature, which kicks in if the patient doesn't take a breath after a certain period of time, but the primary purpose is to do the work of your muscles in inflating and deflating your lungs.

I second all the other posts ... get it as soon as possible. It takes some people a while to get used to, but the more you can rest those breathing muscles, the longer they'll last! I expected to hate it, but didn't, and slept like a log from the get-go.
 
Marianne, have you checked with your clinic's loan closet or the ALSA for funding? It's so upsetting to me that this stuff isn't covered when medically necessary.
 
insurance companies

One thing I've learned is that durable medical equipment coverage is a secret number.
They never publicize it until you need it, & its pathetic 60% from our company at least. Plus there is a maximum per year
 
I agree the sooner the better,I sleep with mine at night and once in a while for an hour in the afternoon if I am tired. Hi crystal-b I see you are from my city i hope the heat wave we are having isn't to hard on you.
 
The difference between cpap and bipap is that the cpap machine is set to mechanically produce x-number of breaths per minute, while the bipap "enhances" your own breathing pattern. The cpap is for people who actually stop breathing while asleep; the bipap is for people with weak breathing muscles.

If you hold your breath with a bipap, the bipap will "hold its breath" also, and not breathe again until you do. It is intended to take over the work of your diaphragm and other muscles that move your lungs, and allow them to rest.

Some bipaps also come with a "back-up" feature, which kicks in if the patient doesn't take a breath after a certain period of time, but the primary purpose is to do the work of your muscles in inflating and deflating your lungs.

I second all the other posts ... get it as soon as possible. It takes some people a while to get used to, but the more you can rest those breathing muscles, the longer they'll last! I expected to hate it, but didn't, and slept like a log from the get-go.

To add to what Beth has explained. A CPAP is constant pressure and a person has to exhale against that pressure which a PALS can't do. Hence the BIPAP which is bi-pressure, this means the pressure drops for exhale, then increases for inhale. Most Bipaps, all I am aware of, can be set to force a breath if you don't take one within a set period of time.
If the Bipap did not have this built in feature I would not be here today.
 
I just got my BIPAP machine. I din't do the Sleep Study; it was set up for me and I was told to call back in a week or two if I have hard time using it.
I used only a few times in evening, have a hard time falling a sleep with BIPAP. I was instructed to use the RAMP setting to help me with falling asleep, RAMP cycle lasts only 15-20 min, which is not long enought for me to fall a sleep/
Any suggestions? Do I need to use chin strap?
Also, any suggestions on maintaining/cleaning?
 
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