New CPAP users: Some Common Questions Asked And Answered

[mindy]

I use MindManager through my job and find it helps me organize my ideas (such as they are!) and thoughts (what thoughts?). For those of us that are visual thinkers, it's nearly indispensible. I am luckily able to get it at an academic discount.

Since I spent many, many years as a software programmer, I'm a bit averse to piracy - that's someone's sweaty work!

Glad to hear there are others here who enjoy "mind mapping".

Mindy
Respironics M-Series Auto
ResMed Swift II Nasal pillows
Tiara ruby chin strap

[base1955]

(I have tried about 14 different masks and it is my fave--but your mileage will vary!)

hi, New Member here.

How do you "try out" 14 masks without actually buying 14 masks?

I'm 3 months into CPAP use and about to chuck it.

thanks for your help

[ozij]

Welcome to the forum, base1955.

This where you'll get all the tips you need (and probably some you don't) from people who've gone through what you have.

There's lots and lots of info on the forum - so get ready for some reading sessions - look at "Our Collective Wisdom" (yellow light bulb) and CPAP FAQ (red balloon).

The forum has a mask roulette going - members changing masks - read this thread for the rules

viewtopic.php?p=168278#168278

This is where you come to complain, rant, ask any question you want, and join in some heated, and some hlarious debates, and many helpful ones.

And if you register, you will be able to use the Private Message function.

Don't chuck it in, don't give up - it's much too important for your health.

Good luck

O.

[socknitster]

[quote="base1955"](I have tried about 14 different masks and it is my fave--but your mileage will vary!)

hi, New Member here.

How do you "try out" 14 masks without actually buying 14 masks?

I'm 3 months into CPAP use and about to chuck it.

thanks for your help

[ozij]

If I had access to an autoclave, I would be using that.

Jen

It's a good thing you don't, Jen. I've held masks in my hand (don't remember which) where the instructions said very clearly that the masks should not be put in autoclave...

O.

[basie1955]

Thanks for the support.

My insurance is (I think) going to cover a second mask.

It's hard to know what my difficulty really is.

I know I prefer to sleep on my stomach, and I may be opening my mouth
during sleep and who know's what else.

I think I'm going to try a Swift II.

This site is a GREAT resource!

Thanks, John

[geoDoug]

F and P flexifit full face
Respironics comfortfull
Resmed ultra mirage full face 2 sizes
hybrid
liberty
optilife
hans rudolph full face 3 sizes
bravo
na II
Swift I and II

...and I ended up buying that Hybrid and Liberty. So far, I've only had to try the Hybrid because it's been serving me so well.

I'll just echo what others have said. You've got two options:
1. Wait for your insurance to pay for another mask (typically 3 to 6 months). In those months, do some research to decide what you want try next. The advantage is that insurance pays for it all. Disadvantage, of course, is that, it becomes a loooooong process. Or....
2. Get creative. In the time in between when insurance will pay for a new mask, pay for a new type of mask out-of-pocket, or horse trade, as others have said here. My feeling is to try different types first to narrow the field down.When decided what to go with next, look at why you didn't like the last one.
So it's a matter of priorities (time v. cost) and individual circumstances.

3. Or you may get lucky and have a good DME that will let you "test drive" several masks before you buy one.

Doug.

[Perchancetodream]

3. Or you may get lucky and have a good DME that will let you "test drive" several masks before you buy one.

Doug.

_________________

Our DME says they offer a 5 day trial. Is this uncommon in the industry?

Susan

[agridi57]

Customer Support at Respironics indicated to me that the FDA has banned the sale of the software because the patient can change the pressure setting without a doctor's approval. Given the fact that you can change the pressure without the software, I think this makes no sense at all and I am wondering if we need to raise hell with the FDA if what Respironics says is true.

[quote="socknitster"]Snoredog,

I agree completely! All I want is to know my ahi and leaks, everything else is gravy. I don't even know how to change my pressure with the software. I have made adjustments on my machine on own for several reasons: my docs don't understand or don't care and my needs have CHANGED. Why continue with the uncomfortable pressure of 16/12 when my machine is titrating me now at 11/9 due to improvements via meds and surgery! If I am educated about the whole thing and have a good machine, I think it is ridiculous to even take this away from me. Diabetics are injecting themselves with insulin on an as needed basis--are they smarter than me?

The controversy I spoke of had to do with priracy. I ultimately edited my original post because it was making folks uncomfortable. I know Johnny Goodman only wants the absolute best for us--but if anything I say or do could get him in trouble, I want him to shut the thread down. I can't claim to understand the legal bullshit going on between respironics and us, the underdogs.

If I had access to ahi and leaks only and no abitlity to change my machine, I would be TOTALLY OK WITH THAT. It would clearly mean that I would have to consult with a doc and bang them over the head with my needs, but I would accept that. My machine does display these things but the lcd display is NOT RELIABLE and I need the software to see the specifics. And I want to know night by night (not an average of seven days!) in case I try a new sleeping position or mask or some other adjunct to my treatment. I will need to know right away if what I tried is working or worsening my treatment.

I hope some IT genius can come up with the software you describe. I don't know the ins and outs of this kind of stuff. Or the legality.

My main concern is new users and the difficulties they are facing. That is why I posted this.

[socknitster]

3. Or you may get lucky and have a good DME that will let you "test drive" several masks before you buy one.

Doug.

_________________

Our DME says they offer a 5 day trial. Is this uncommon in the industry?

Susan

[bdp522]

I tummy sleep. I have used the following masks with no problem, even on my tummy I find them to be quite comfortable;

hybrid
CL2
optilife
soyala nasal
Comfortlite

I seem to be able to make just about any mask work for me in just about any position. The UMFF is the only one so far that I haven't been able to tummy sleep with, but I'm sure I'll get it eventually!

[mindy]

If I had access to ahi and leaks only and no abitlity to change my machine, I would be TOTALLY OK WITH THAT. It would clearly mean that I would have to consult with a doc and bang them over the head with my needs, but I would accept that. My machine does display these things but the lcd display is NOT RELIABLE and I need the software to see the specifics. And I want to know night by night (not an average of seven days!) in case I try a new sleeping position or mask or some other adjunct to my treatment. I will need to know right away if what I tried is working or worsening my treatment.

I hope some IT genius can come up with the software you describe. I don't know the ins and outs of this kind of stuff. Or the legality.

My main concern is new users and the difficulties they are facing. That is why I posted this.

_________________
[/quote]

Hi,

Although the LCD displays 7- and 30-day averages, it *is* possible to construct a spreadsheet which will give you the real daily numbers. I'm in the middle of doing that and if anyone else wants a copy, I'll be happy to share when finished. Just a warning that it will be a rough job!

Mindy

[billbolton]

Given the fact that you can change the pressure without the software, I think this makes no sense at all and I am wondering if we need to raise hell with the FDA if what Respironics says is true.

That sounds like a great recipe for getting FDA to require access to clinical menus be severely restricted (i.e RSA based codes etc) rather than the relatively simple approaches in use at present.

Beware the rule of unintended consequences!

Cheers,

Bill

[j.a.taylor]

Hey everyone,

I thought that this was a good conversation, and helpful to some of us "newbies."

Since more are added daily, I thought I'd put this post back in circulation.

Thanks socknitster for posting this thread.

[Slinky]

I don't believe there is any forum policy against discussing the various software for xPAPs. I've never seen anyone admonished for doing so nor had their post deleted.

I do agree w/and practice informing others where to purchase hard to get software and reader cables via PM out of respect for our host when they can be gotten elsewhere cheaper and to protect the right of those DME suppliers to continue to obtain not just the software and reader but also the manufacturers' xPAPs and equipment to sell.

We see URLs for other suppliers posted frequenty and I've never seen those posts censored in this forum.

I feel the same way about informing newbies of how to access the data available via their LCD screens (I don't know an LED from an LCD screen). I will post publicly how to access Resmed's Advanced Patient Menu for the Efficacy and Usage Data.

When it comes to info from the Clinician's Menu and its access I prefer to share that info via a PM on a case by case basis since that could involve ACCIDENTALLY changing therapy or pressures and I need to feel fairly comfortable that person has some good basic understanding of CPAP therapy and won't just willy-nilly start stabbing buttons. MOST times sharing that info isn't a problem, once in awhile I'm content to sit back awhile and read a few more of their posts before sharing that info.