Wrong bipap?

[glupavomomiche]

Maybe it's a dumb question... maybe not. I'm hoping those of you that are more experienced with this bipap business can answer this question.

My Rx for the bipap specifically says "Equipment being ordered: Bi-level intermittent positive air pressure (BiPAP ST with AVAPS) with heated humidifier and nasal interface."

Seems clear enough.

HOWEVER, I get the thing today, but it does not say anything about AVAPS anywhere on it. I asked the home health guy about it, and he just stared at me blankly a moment, declared it was what the doctor ordered, and moved on in his well-rehearsed speech on how to use the thing.

So is this the right machine or not? I'm thinking not. Anybody know anything about the AVAPS?

~ Sarah

 

[brooksea]

I've looked them up and I believe you are totally correct in your assessment! All the machines seem to have "AVAPS" clearly on the top.

 

[caldona]

My Bipap ST will make you breathe ever twelve seconds or at least it puts air in ever twelve seconds so you will breathe. I was told this is the kind of all ALS patients should have and if you didn't get an ST I would call the place I got it from.

 

[rose]

It will say AVAPS, you should have this, it is much better than standard BiPAP. I've had both.

Don't let the home healthcare place get away with this. And, don't let the guy just drop and run when he brings you the correct machine either. make sure you understand how to use it, and that the mask is comfortable for you, while sitting up, and also laying down.

This is the latest model for USA...

http://www.healthcare.philips.com/us_en/homehealth/respiratory_care/bipapavaps/default.wpd

A BiPAP AVAP prescription should say:
Contains one of the following words or phrases "BiPAP ST", "AVAP", "BiPAP AVAP", "BiLevel AVAP", or "Average Volume Assured Pressure Support"
Contains your physician's contact information
Contains your physician's signature
Contains the patient's full name
Contains the Tidal Volume Estimated

 

[glupavomomiche]

Thank you, thank you, thank you, CJ, caldona, and rose!... especially for the confirmation that I'm not nuts

Caldona, this one does do the give a breath thingie (I guess that's just an ST feature, which is what the machine claims to be on its nametag). I took it for a spin earlier today and tried not breathing to see how that feature worked... interesting to say the least!

And I have to say... I heard all the stories about people not being able to tolerate the air pressure or the mask or the this or that. But not one time has anyone ever voiced my complaint:

How are you supposed to sleep while smelling plastic?! LOL

~ Sarah

 

[rose]

How are you supposed to sleep while smelling plastic?! LOL

~ Sarah

Spritz something you like the smell of behind the machine where the air intake is. I absolutely adore a fragrance by Guerlain, and I keep the bottle on the dressing table by the bed. Each night after I fill up the water reservoir for the machine, I lean over and spray one puff of the fragrance onto the cloth skirt of the dressing table, which the back of my machine is next to. Gotta be careful about anything too strong because it will permeate the plastic. Some people put essential oils they like the scent of, such as lavender or vanilla in a shallow dish next to the air intake vent. Anything soothing is good, if you like how it smells. Just don't put anything directly into the water reservoir. (also, take heart that the plasticy smell eventually fades)

 

[Okie2]

What brand is the machine. My trilogy does not say avaps anywhere on the outside, but when you turn it on avaps is displayed on the screen.

 

[trfogey]

What brand is the machine. My trilogy does not say avaps anywhere on the outside, but when you turn it on avaps is displayed on the screen.

If I recall correctly, the Trilogy machines are made by Philips Respironics, as are the brand name BiPAP and AVAPS systems.

 

[caldona]

When I get a new mask my husband cleans it with vinegar water now I had one mask we could not get the smell out of it so I called the people that brought it to me and told them I couldn't stand the smell. They opened a new box and brought me a new one and it was ok. I can't stand perfume smells nor could I take the smell of that mask.

 

[glupavomomiche]

Thanks for all the responses!

Caldona, I'm not much of a "scent" kind of person... with my migraines and allergies there are very few I can tolerate. Fortunately the plasticy smell has already diminished quite a bit (or I got used to it.... either one)! I have some cherry car air fresheners that I like and use in my car and classroom... might end up sitting one of those behind the machine if I need to!

Okie, it's a Philips Respironics. My neighbour's home health guy came and took a look at it for me. He said since the monitoring screen says "S/T" that it's not an AVAPS. So... will be calling the DME company on Monday to see if they can get it all sorted out.

So I do have one more question you guys might can answer. The ipap setting is 8 to start... and the order is to titrate up from there. I'm not feeling that it does a whole lot... so does that mean I need to let the DME agent/therapist know and they will bump it up a little, or is that something the doctor does? Not sure about the whole protocol of this thing!

Thanks,
Sarah

 

[caldona]

The people that set my machine up is the ones that changes my settings then she calls the doctor and tells him the changes made.

 

[glupavomomiche]

Called the DME company this AM and yep, it is indeed the wrong BiPAP. So they are ordering the right one and told me to keep using this one for now. Caldona, also asked them about upping the number and, since the doctor put in the Rx to titrate up as needed, they're going to work on that too. Whew... And something tells me this is just the first ordeal of many in the ALS equipment department... Can't imagine what a nightmare getting a wheelchair is going to be!

 

[momap53]

Glad that you got that sorted out. I so wish I had gotten the elevate feature on my PWC. Make sure you do a review on the forums before ordering your chair!

 

[glupavomomiche]

Deb, I have heard/read sooooo many people say that they wish they had gotten the elevate feature that I plan to make sure I get it. I actually have been keeping a little list of things in my notebook as I come across them so that hopefully I will read and/or remember to ask for them at the appropriate time. Just went to see my local neuro guy today and we really talked about the feeding tube (I know it's getting closer and closer since I'm dropping weight like crazy). I made sure I asked about the button/Mic-key and he assured me I could get that right away. I would never have known to ask for it without advice from all my fellow pALS on this forum and FB!

 

[Dancer]

So ST does not necessarily have AVAPS. Mine delivered 3 days ago is ST. Can anyone tell m e in plain English what the difference is without AVAPS?