Re: question about oxygen/muscle weakness

[Guest guest]

Kristie, tks! Great explanation! You were the only person I could

think of in the group who probably had both feeding tube and mask at

night. I had even considered posting a question to you, but just

decided to wait and see if you responded. I did wonder where V-Pap

fit, and you answered that too.

You guys are just great. You always come through for me when I need

help. Kudos!

Barbara

> Barbara,

>

>

>

> I am actually using a V-Pap now which is a step up from a Bi-Pap,

but let me

> see if I can explain some of the terms to you.

>

>

>

> The IPAP is your inspriatory pressure. How much the machine is

pushing air

> in your lungs measured in cm H2O. The EPAP is your expiratory

pressure or

> how much the machine is working as your exhale (again measured in

cm H2O).

> The difference between the two is your ventilatory pressure.

Whether you

> have a CPAP or BiPAP you will have IPAP and EPAP settings. They

will tend

> to be further apart on Bi-Pap. With CPAP your IPAP and EPAP will

> essentially be the same because it is a continuous flow.

>

>

>

> One other thing to think about is the mask. If you are having to

get up

> that often at night you might want to make sure the mask you get

has quick

> clips on it. I'm using an Ultra Mirage by Res Med. I like how

they

> designed this.

>

>

>

> Hope this makes some sense.

>

>

>

> P.S. I'm also tubular at night with the V-Pap, O2 and J tube...it

gets

> interesting some nights for sure )

>

>

>

> Kristie

>

>

>

>

>

>

>

>

>

> Message: 11

>

> Date: Fri, 05 Nov 2004 21:35:38 -0000

>

> From: " wheatchild2 "

>

> Subject: Re: question about oxygen/muscle weakness

>

>

>

>

>

> Okay, the oxygen part makes sense, but now I'm slightly confused

on

>

> the inhale/exhale part. The MDA link I found mentioned a biPAP

>

> machine with two settings, one for inhaling and one for exhaling.

>

> But they labeled the settings IPAP and EPAP. So where does CPAP

fit

>

> in this scheme of things? I've pasted the MDA excerpt below. Does

>

> their description sound like your old machine or your new machine?

>

>

>

> As always, appreciate your help.

>

> Barbara

>

>

>

>

>

> Question #3 - What are the two BiPAP settings?

>

>

>

> Answer - " IPAP " and " EPAP " - The " IPAP " is inspiratory airway

>

> pressure. This pressure assists airflow into the lungs with each

>

> breath. It assists breathing and allows the respiratory muscles

rest

>

> so that a person often can function more strongly later in the

day.

>

> This is usually used at night when lying down makes breathing more

>

> difficult. Then during the daytime, while sitting up or standing,

>

> breathing is easier and the rested muscles are often able to

>

> function with more strength. The " EPAP " is the expiratory airway

>

> pressure that clears expired air with CO2 out of the ventilator

>

> tubing (circuits). The " EPAP " is usually set as low as possible,

and

>

> the " IPAP " is set high enough to get good lung expansion, to be

>

> comfortable, and to achieve an oxygen saturation of at least 95%.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Barbara,

Like Kristie I use a VPAP. Mine is a VPAP II ST-A, and I use it in a

mode which makes it work as a non invasive ventilator. The mask I use

is made by ResMed and is called a Mirage Vista. I have been on some

sort of NPAP (nasal positive air pressure - Cpap's bipaps, etc) since

I was 10 and the Vista is the best mask I have ever used. It was

designed for people with neuromuscular diseases. On each side of the

mask there are controls to move the mask up or down. You can move

each side independantly or together. This is great if you happen to

have a facial weakness on one side and not the other - either all the

time or only sometimes. Also, with the Vista there is no forhead

piece so you can see the TV or read a book with it on. I personally

really like this, since I am using it 24/7 it is a whole lot easier

to see things. I don't have to look at things sideways anymore! hehe.

The straps are used with quick clips which makes it easy to get the

mask on and off (like the mirage) so you don't have to readjust the

headgear each time you take off the mask. With other masks I have

gotten pressure sores because of the amount of time I am on the

machine, but with this one my nosebridge barely gets red. Kinda

cool. If you go to http://www.resmed.com/1030599206739.html you

can see ResMed's mask systems. They have a new one called Mirage

Swift. It is a type of nasal pillows but actually pretty comfortable.

I had tried other nasal pillows and didn't like them, but this one

was nice. I can't use it because of my really high pressure, but if

your IPAP is under 15 it should work well.

You CAN request to try different masks during a sleep study. Just be

aware that most sleep clinics have their favorites and will sometimes

claim they " don't have that one " or they've " never heard of it " .

Basically that means they aren't working with the sales rep from that

company but they probably have it in stock. Just be persistent! If

you try a mask during a sleep study and don't like it, just wake up

and ask to try another one.

One more thing you might want to look into. I use a filter that goes

on the front of my machine where the tubing comes out. This is in

addition to the two filters in the back of my machine. The filter on

the front filters out the extra dust AND it filters out germs and

stuff like that - which greatly reduces my chances of infection when

I am using the machine in public. They are commonly used in hospitals

to help keep the risk of infection down. I know you probably won't be

using your machine in public, but it is still nice to have the extra

protection. I can get you the name and model number if you are

interested.

By the way, my mother claims I tie knots in my IV tubing, get it

around my VPAP hose and tied up in my pulse ox cord - all while not

moving a muscle. She just might be right, because I tend to wake up

pretty tangled! I just tell her it is a talent that might not be

marketable but sure is funny.

Good luck with everything.

Keep Smiling,

Nikki

>

>

> Okay, the oxygen part makes sense, but now I'm slightly confused on

>

> the inhale/exhale part. The MDA link I found mentioned a biPAP

>

> machine with two settings, one for inhaling and one for exhaling.

>

> But they labeled the settings IPAP and EPAP. So where does CPAP fit

>

> in this scheme of things? I've pasted the MDA excerpt below. Does

>

> their description sound like your old machine or your new machine?

>

>

>

> As always, appreciate your help.

>

> Barbara

>

[Guest guest]

Nikki, Of course, you are the ultimate expert on ventilators! And

your mother is no doubt the ultimate expert on untangling tubes.

What wonderful information....this is the kind of thing you only

hear from patients with first-hand experience. Makes all the

difference to have inside info. Especially appreciate the mask

advice about getting what works and being persistent. Will

definitely check out the Mirage Vista. Tks so much for taking the

time to share...much appreciated.

I hope you are holding your own. You sound like your cheerful self

and that always encourages me.

Blessings!

Barbara

>

> Barbara,

> Like Kristie I use a VPAP. Mine is a VPAP II ST-A, and I use it in

a

> mode which makes it work as a non invasive ventilator. The mask I

use

> is made by ResMed and is called a Mirage Vista. I have been on

some

> sort of NPAP (nasal positive air pressure - Cpap's bipaps, etc)

since

> I was 10 and the Vista is the best mask I have ever used. It was

> designed for people with neuromuscular diseases. On each side of

the

> mask there are controls to move the mask up or down. You can move

> each side independantly or together. This is great if you happen

to

> have a facial weakness on one side and not the other - either all

the

> time or only sometimes. Also, with the Vista there is no forhead

> piece so you can see the TV or read a book with it on. I

personally

> really like this, since I am using it 24/7 it is a whole lot

easier

> to see things. I don't have to look at things sideways anymore!

hehe.

> The straps are used with quick clips which makes it easy to get

the

> mask on and off (like the mirage) so you don't have to readjust

the

> headgear each time you take off the mask. With other masks I have

> gotten pressure sores because of the amount of time I am on the

> machine, but with this one my nosebridge barely gets red. Kinda

> cool. If you go to http://www.resmed.com/1030599206739.html you

> can see ResMed's mask systems. They have a new one called Mirage

> Swift. It is a type of nasal pillows but actually pretty

comfortable.

> I had tried other nasal pillows and didn't like them, but this one

> was nice. I can't use it because of my really high pressure, but

if

> your IPAP is under 15 it should work well.

>

> You CAN request to try different masks during a sleep study. Just

be

> aware that most sleep clinics have their favorites and will

sometimes

> claim they " don't have that one " or they've " never heard of it " .

> Basically that means they aren't working with the sales rep from

that

> company but they probably have it in stock. Just be persistent! If

> you try a mask during a sleep study and don't like it, just wake

up

> and ask to try another one.

>

> One more thing you might want to look into. I use a filter that

goes

> on the front of my machine where the tubing comes out. This is in

> addition to the two filters in the back of my machine. The filter

on

> the front filters out the extra dust AND it filters out germs and

> stuff like that - which greatly reduces my chances of infection

when

> I am using the machine in public. They are commonly used in

hospitals

> to help keep the risk of infection down. I know you probably won't

be

> using your machine in public, but it is still nice to have the

extra

> protection. I can get you the name and model number if you are

> interested.

>

> By the way, my mother claims I tie knots in my IV tubing, get it

> around my VPAP hose and tied up in my pulse ox cord - all while

not

> moving a muscle. She just might be right, because I tend to wake

up

> pretty tangled! I just tell her it is a talent that might not be

> marketable but sure is funny.

>

> Good luck with everything.

>

> Keep Smiling,

> Nikki

>

>

>

> >

> >

> > Okay, the oxygen part makes sense, but now I'm slightly confused

on

> >

> > the inhale/exhale part. The MDA link I found mentioned a biPAP

> >

> > machine with two settings, one for inhaling and one for

exhaling.

> >

> > But they labeled the settings IPAP and EPAP. So where does CPAP

fit

> >

> > in this scheme of things? I've pasted the MDA excerpt below.

Does

> >

> > their description sound like your old machine or your new

machine?

> >

> >

> >

> > As always, appreciate your help.

> >

> > Barbara

> >

[Guest guest]

Barbara,

I am glad some of the info helped. These are the little things that

the medical professionals forget to tell us. hehe. If you have any

more questions, just let me know. I hope that this goes well for you.

All of this can be a little confusing at first, but hang in there.

Keep Smiling,

Nikki

>

> Nikki, Of course, you are the ultimate expert on ventilators! And

> your mother is no doubt the ultimate expert on untangling tubes.

> What wonderful information....this is the kind of thing you only

> hear from patients with first-hand experience. Makes all the

> difference to have inside info. Especially appreciate the mask

> advice about getting what works and being persistent. Will

> definitely check out the Mirage Vista. Tks so much for taking the

> time to share...much appreciated.

>

> I hope you are holding your own. You sound like your cheerful self

> and that always encourages me.

>

> Blessings!

> Barbara

>

>

[Guest guest]

Nikki...I figure if you can hang in there, I can too. And I just may

have more questions. We'll see what happens.

Tks again.

B

> >

> > Nikki, Of course, you are the ultimate expert on ventilators!

And

> > your mother is no doubt the ultimate expert on untangling tubes.

> > What wonderful information....this is the kind of thing you only

> > hear from patients with first-hand experience. Makes all the

> > difference to have inside info. Especially appreciate the mask

> > advice about getting what works and being persistent. Will

> > definitely check out the Mirage Vista. Tks so much for taking

the

> > time to share...much appreciated.

> >

> > I hope you are holding your own. You sound like your cheerful

self

> > and that always encourages me.

> >

> > Blessings!

> > Barbara

> >

> >