CPAP- Should I turn it into flower vase?

writes4me · Post by **writes4me** » Mon Oct 22, 2007 10:55 pm

I talked today with the health representative who was recommended by my pulmonologist. This was my 3rd visit and I'm on a 3rd mask.

My health care rep. said, "Mrs. blah-blah, this is your third mask. You cannot keep switching out masks. Your insurance will not pay for it. You have to make a decision and in six months we can possibly get you something else."

If I can't find a mask that fits and allows me to sleep then should I turn my CPAP machine into a flower vase? It makes no sense to me to have a cpap machine that I can't use. How on Earth am I supposed to know if the mask they are handing me is what is going to work until I sleep with it for a night or so? Do runners in marathons take whatever shoe is offered to them and run regardless if their toes turn blue and fall off? I know my cpap costs more than a lousy pair of running shoes, so why can't I get a mask that fits so I can use this expensive piece of equipment that is supposed to revolutionalize my life?

I told "the non-gender-specific" health care rep. that I had been on line and noticed that there were several models of masks made for people, who like me, sleep on their sides. The health rep asked, "Mrs. blah-blah, do you know the name of this mask?"

Stupid me, I hadn't make a print out copy. For some dumb reason, I thought this highly trained individual would know about masks designed for side sleepers. I was terribly wrong.

"Mrs. Blah-blah, there are nearly 100 different brands of masks on the market. This is your third mask and it will be your last. Do you want the mask I've shown you?"

I'm looking at a *&JJY^^*IJ nose mask (a different brand of nose mask that has little holes in it instead of the whistling slit like the last one). I even ask about the little nose model that is on the face of a dummy in the display.

"Isn't that the one you are supposed to use if you sleep on your side?"I ask, "Or the one that fits over your head?" I look down at the stiff, uncomfortable mask in my hand. Everything about it screams 'cheap piece of plastic.' "It doesn't seem to have much padding on the forehead at all. And when you tried it on my nose I noticed it wanted to move up under my nostrils. Is it supposed to do that?"

"No," the health rep said. "Just keep the mask on and tighten it down."

"This is a mask for people who sleep on their sides?" I asked again.

"This is the only mask we have for side sleepers. And everybody seems to like it."

Who the heck is this "everybody" he's talking about, I'm thinking. I shrug. I don't know if this mask will work any better than the last one. I've asked if it makes more noise. The health rep says, "Mrs. blah-blah, all masks are going to make noises."

"Mrs. blah-blah, will you take the mask you have in your hand or not?"

I took the new mask. I'll sleep with it tonight. If it doesn't work I'm angry enough to take the entire lot back, machine, crappy hose, and humidifier. I won't pay for something that is just sitting by the bed and useless.

I'm paying for this lousy service and the machine because the machine is on a "RENTAL 3 MONTH PERIOD" but for some reason it's been decided for me in a rental period that I can only try out 3 different masks. And none of these masks have any information on them at all. There is no book in the office or brochure to tell you why this mask is any better than another. There is no list of features of different masks and nothing that tells you which masks are better for which kinds of sleepers.

I'm not an unreasonable person. I've given each mask thus far at least a week and tried to make them work. I don't want to feel tired all the time. I want to get better and feel like a human being again.

I've decided that a CPAP machine doesn't make a good flower vase, at least not until it is featured in Martha Stewart and comes in cooling mint green colors.

writes4me · Post by **writes4me** » Mon Oct 22, 2007 11:00 pm

FlexiFit HC407 Nasal CPAP Mask ----------is the mask that I was given. My "3rd Mask"

grandmma · Post by **grandmma** » Mon Oct 22, 2007 11:07 pm

It would appear that the problems you are facing are also faced by the larger majority of "us" (CPAPers). I'm towards the end of a 2 month trial of equipment, but I'm in Australia, so the 'rules' may be different. Stick with it - I still am. Thanks to advice by seasoned pros on this forum, I've gone back to my medical contact, and demanded my rights with regards to trialling masks - they made me initially purchase one also. I've trialled so many masks, but have given up and 'settled for' the original sold to me. Sometimes it could be simpler to find a way around the best mask for you, or the one you end up with! - can you advise the problems with the mask? Red marks, strap marks, air leaks - ? I'm playing with streamlining my side effects, and still wake when I turn, since I'm also a dedicated side sleeper. I hook the hose over the (high) bed head, and turn on my back to swap sides. But it has been 6 weeks now, and the waking moments are becoming fewer. If you advise the problems you're facing in greater detail, there are great guys and gals on this forum who can help. Good luck.

rested gal · Post by **rested gal** » Tue Oct 23, 2007 1:06 am

writes4me, welcome to the board!

I'm glad you posted your experience with that less than helpful DME person. It's been awhile since I've pounced up on my soapbox, so here goes --

I firmly believe that the mask is the #1 reason people drop out of cpap therapy. Even if they sincerely WANT to make it work, are TRYING their best to make it work, and KNOW how important it is to use cpap.

It's not the pressure. It's not the noise. Those things can be a problem, but the #1 problem is the mask, imho. Sheer discomfort with a mask. Mask leaking like crazy, not allowing a person to sleep in their normal positions, or just plain hurting.

The lack of support by so many DMEs in helping people get THE MASK right leads absolutely and directly (imho) to the high dropout rate for people prescribed "cpap."

I understand the DME is in business. I understand that the more masks they have to use, the more time they spend with a person...all that is eating into profit.

My view is that the employees are too poorly trained in the first place about these things. It can be the most caring, concerned employee in the world, but the treatment is going to be more than an uphill battle if the DME employee doesn't know these things:

1. How to conduct a mask fitting. A five minute fitting while the person is sitting up and never lies down is NOT the way to do it. At some point the mask needs to be tried out while the person is laying down and turning in their usual sleep positions. AND with cpap blowing at the prescribed pressure. There's no other way to know for sure if the mask has even a chance of really suiting that person.

2. What kind of hints and tips to offer that could make a mask that's "almost ok" actually work well and work comfortably. Things to try if a mask that starts out ok at bedtime becomes a leaky miserable mess in the middle of the night.

I'd be fired if I worked for a DME. They'd have me up for causing liability issues, for inappropriate behavior, or sexual harrassment or something because... yeah...that homemade strap thingy.

Before each customer left the store, I'd take a brandnew pair of pantyhose tights out of a package, cut off a leg, and show the person how to tie the leg around his/her head if the mask started giving trouble that night. Seriously. I would.

Out of my own pocket, I'd put together a care package for each person to take home with the mask. Pantyhose tights leg, scrunchie, adhesive hook for the wall, a PVC elbow connector, a swivel hose connector; Ayr gel for nasal pillows masks/moleskin for nasal and FF masks. Probably some more stuff, but at least those things as a "TSKIT" -- a Tweak Starter Kit." Formal instruction sheet included on how/when/why to apply said tweaks.

I'd include pictures for them to take home of ways to hang the main air hose. Pictures right from this forum of the creative ideas people have come up with for hose management.
viewtopic.php?t=10640

I'd have a list of suggestions for things they might want to consider buying themselves to make sleeping this crazy new way more comfortable:

A PAPillow or the Shapeable pillow from Target.
A hose cover.
Pad-a-Cheeks strap covers.

They'd receive a paper describing "rainout" and various ways to deal with it -- from the simplest solution (turn down the humidifier heat) on through hose covers and up to the Aussie heated hose.

A lot of stuff to cover in just a "mask fitting session?" Perhaps. But you know what? EVERY one of those things has a bearing on getting the most important piece of the puzzle...THE MASK... to work well and let people sleep DESPITE having to wear one.

The mask can be fine, but if the main air hose is tugging it out of place every time the person turns over...

The mask can be fine, but if condensation is collecting in the mask and making a slippery cushion or nasal pillows lose their seal, not to mention dripping into the nostrils...

The mask can be fine, but if the straps are leaving marks on their face...

The mask can be fine, but if it keeps bumping against the person's head pillow when they try to sleep on their side...

The mask can be fine, but if it keeps dragging the main air hose under and around a person every time they turn over...

For those with internet access, I'd include a paper with several URLs:

A. Mile High Sleeper's excellent blog
http://www.smart-sleep-apnea.blogspot.com

B. cpaptalk.com
I'd urge them to participate in the message board. I'd warn them about the DME bashing they could expect to see on the message board, and assure them that it won't be like that at this place of business. That I WILL help them until we get it right...and above all...get their setup COMFORTABLE enough to actually be able to sleep again.

C. Moogy's hints and tips topic
viewtopic.php?t=14746

D. Lab Rat Award fixes
viewtopic.php?t=15104

And finally...'cause it always helps to laugh...

E. Mike Moran's cpap humor posts
viewtopic.php?t=5949

Heck, as an afterthought I might even throw in the URL to "ALL Links"
viewtopic/t17435/ALL-LINKS-by-rested-gal.html

Whew. Got that rant out of my system for awhile.

Catnapper · Post by **Catnapper** » Tue Oct 23, 2007 4:40 am

Wow, RG, that was a great post. I copied that into my file of saved cpap things to help me or anyone I meet who needs some help with sleep apnea therapy.

I wish you had been my RT the first day. And the rest of the time, for that matter. In a way, you have been my RT since I started with cpaptalk, you and many others here who helped me find my way. Thanks to people here and my own determination to make this work, I am putting flowers in vases, not my cpap machine.

writes4me, I wish you well, and hope you can make the therapy work for you. It will save your life. It does get better in time, and the right mask helps.

For side sleeping, the one you were given works pretty well. No matter what the RT you have says, tighter is not always better. My choice is the mask with many names, now called the Headrest, I think. Rested gal will tell you all about it, I bet, if you ask. It works best for me once it is altered a bit. It is scary looking when you bring it home, but great once you remove the excess stuff.

Catnapper

Slinky · Post by **Slinky** » Tue Oct 23, 2007 5:41 am

You might also try some of the tips in Mask Fitting under the Red Ball w/the Question Mark in it at the top of the page. You may need to be a little more assertive and just tell this DME person if you can't get a comfortable mask they are getting all the equipment back!! It can take a good week to 10 days to know if a mask is going to work for you or to have unsuspected problems crop up. Most of us tend to tighten our masks too tight at first. The cushion needs to fill w/air and remain filled w/air to provide a good seal. You may need to complain to management and your insurance that this person just is not providing the instruction and assistance you need to find a good fit. Good luck!!!

sharon1965 · Post by **sharon1965** » Tue Oct 23, 2007 5:45 am

I told "the non-gender-specific" health care rep.

just out of idle curiosity, what does this mean?

rested gal · Post by **rested gal** » Tue Oct 23, 2007 5:51 am

Catnapper wrote:My choice is the mask with many names, now called the Headrest, I think. Rested gal will tell you all about it, I bet, if you ask.

LOL!! Is that my cue, Joanie? Yep, I will... even if not asked.

The Headrest has been my favorite mask for a long time, too. Super for sleeping in any position. Helps to add a "you know what."

LINKS to HeadRest nasal pillows mask topics (same mask has had other names: Aeiomed Aura, then Headrest, then Invacare Twilight NP, then back to Headrest again.)
viewtopic.php?t=3098

jaybee72 · Post by **jaybee72** » Tue Oct 23, 2007 6:24 am

I'm surprised that no one has mentioned the obvious here:

Your insurance should not have to pay a dime for you to change out masks that don't fit! Some of the mask suppliers will refund the DME for masks that don't work out for patients if it's done in a timely matter. And, the DME cannot add extra charges to your insurance to bill for the time it takes to fit each one.

So, they are simply being lazy, and lying to you. If this mask doesn't work out and you need to try another kindly explain to them that you know better about "your insurance isn't going to keep paying to change masks" and ask them if they'd like all of your equipment back instead.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): DME

Slinky · Post by **Slinky** » Tue Oct 23, 2007 8:14 am

JayBee, I was aware (and remiss in not mentioning) that the three main mask producers, Resmed, Respironics and Fisher & PayKel, would replace FREE to local DME suppliers those masks that patients' had tried and didn't work out IF the DME supplier would fill out a form and return the mask(s) w/in 30 days. I didn't realize that ALL mask manufacturers would do so. Are you sure about the ALL??

Guest · Post by **Guest** » Tue Oct 23, 2007 8:16 am

I got the breeze and made so many mods to it and a memory pillow from target. I have pieces of fleece everywhere. I made the hose covers, and little comfort ties and put them where the mask was touching me head. I made a tie for the nasal pillow, so it wouldnt shift when I move. I sleep alot better, not 100% every nite but more than I was. This is a hard treatment to get adjusted too. I'm trying to get enough sleep so I can exercise. I've been too tired to move after work, and just lay like a lump. Now that I'm getting some zz's, I'm hoping that I can lose weight and lose the machine. Fingers are crossed!!!

Slinky · Post by **Slinky** » Tue Oct 23, 2007 8:19 am

Good luck, Odawa. Just don't get your heart too set on not needing a CPAP after the weight loss. Be sure to have a sleep study done w/o CPAP when you've hit your desired or target weight BEFORE storing your CPAP in the closet - or worse yet selling it or passing it on to someone else!!!!!

jaybee72 · Post by **jaybee72** » Tue Oct 23, 2007 8:22 am

Ok, I editted my post a bit based on Slinky's response. I just wanted to point out that most of the time it doesn't cost your insurance or the dme to change masks that don't work out if done in a timely manner...

NeedinZs · Post by **NeedinZs** » Tue Oct 23, 2007 8:24 am

I have 4 words.....

RESTED GAL FOR PRESIDENT!!!!!

You rock!!

sleepie · Post by **sleepie** » Tue Oct 23, 2007 8:30 am

just got my benifit statement yesterday

ultra mirage 2--nasel mask---220.00
2 filters---28.00
headgear for above mask--96.00

wow--and i just asked for filters and a replacement cushion

was told they don't replace the cushion

now i know why--what a ripoff

pat

CPAP- Should I turn it into flower vase?

CPAP- Should I turn it into flower vase?

great post

Re: great post