New to Cpap and dreading another night.

[DJD52]

During sleep study I wore a Swift FX (not happily in my nose but didn't know there was lanolin to help that) so that is what the doctor prescribed and what the respiratory therapist brought, except the one 'for her'. After wearing it 20 mins while he showed me various things about the machine, he asked me how I was doing. My reply sent him out to the car to bring in the Pilairo. The Pilairo DID feel so much better in my nose at that point!! It is so easy to put on, seals right off and in 5 nights I haven't felt any leak. Thanks to reading posts here I got the pure lanolin recommended and that totally helped the unhappy areas right inside my nostrils. (sorry, not up on the right words yet) So happy when I managed to wear it the whole night but I am finding that the hose seems to put a pull on the mask so the pillows and the area they are attached to press right or left, up or down depending on where the hose is. (side sleeper but not extremely restless) This morning I found my whole nose hurts again but it's increasing and tho this does ease up through the day it feels like someone whacked me in the night. My respiratory therapist from the medical supply is already suggesting I go into the cloth nasal mask. (Weaver) I'm reluctant to give up yet, afraid the next one may be worse. I get strap marks and indents from the nasal pillow resting area and I don't think that is supposed to happen, I have a reg sized head so the strap should have been fine although it has no adjustment. Thinking maybe there just isn't enough support for the nasal pillows to to keep the mask in place comfortably after the hose is attached. Considered tying the hose up to the headboard with binder twine to give support or taping twine to the mask and tying it to the strap on the back of my head. Just kidding here but better to laugh than throw in the towel. I was tickled with the Pilairo, I just don't know whether to hang in there or move on to something else.

[chunkyfrog]

Change is good; especially when your face is new to this stuff and gets sore easily.
You may be cinching the FX up too tight; it should ride lightly on the bottom of your nose,
air pressure pushes it up like a puckery little kiss.
Alternate mask shapes will let your nose heal.
Cloth masks are very gentle on the face, in many positions.
If the triangular SleepWeaver (Advance) is too large, the élan has 3 sizes,
though the smallest is separate from the kit.
Welcome!

[Pugsy]

The head strap on the Pilairo is supposed to be one size fits all but I have a small head and if worn where the picture shows it was too snug...and when your nose hurts or you have dents...that means things are too snug.

Try wearing the strap around the head just above the ears instead of high on the crown and see if that loosens it up enough.
There are also ways to modify the strap and add a bit of length.

BTW if the Swift FX hurt your nose...I bet you also had the top strap on it too tight. That's the most common mistake newbies make with any of the nasal pillow masks. That and nasal pillow that is the wrong size (most often too small).

If any nasal pillow mask tends to push or pull the end of the nose up...so that you look like you have a piggy nose...it's too tight.

[khauser]

Hi DJ,
Welcome to the forum! I am sorry to hear that you are dreading the next night, but I have to tell you you're doing quite well!

Hose management is a problem with ANY mask. I use the Tap Pap, and the hose can't displace it (a definite plus on the mask) but host management is still an issue, unless one is fond of attempting to pull out one's own teeth!

The most successful strategies involve some manner of attaching those hose above you so it goes down to your nose. However, be aware that if you should have a problem with rainout (search the forum for that term) then a downhill hose can make it worse.

If you wear PJs to bed, you can get a host "clamp" that allows you to attach it to your PJs so it doesn't change relative to your nose ... just don't forget to detach it when you get up. A tee-shirt would also work. I get overheated easily so neither of these work for me, but I do use a hose clamp and I attach it to my sheet. (Remember, though, that my nasal interface isn't bothered by where the hose is.) This is what I have in mind.

Stay in touch! There's tons of help here.

[DJD52]

Thank you ALL for the response! Awesome!
I didn't have anything to say about how the Swift FX was adjusted as the night I wore it I was in the sleep lab. When I told the tech the next morning how it felt all night he stated that it must have just needed adjustment but he was so happy I did wear it all but 5 mins of the needed 6 hrs that he and the specialist prescribed it. The therapist who came to set me up adjusted it also and I was just sitting in a kitchen chair. It just bothered the inside of my nose even there, but he certainly didn't know about that pure lanolin! He just moved me into a softer pillow, the Pilairo that first day and WOW, it felt pretty good but what would I know at that point.
Pugsy, I'm wearing that adjustable strap right above my ear and as far down my head in the back as I can and I do have a red piggie spot on the end of my nose in the morning and thinking that pressure is why my nose hurts clear up to the bridge! (thinking maybe to make my hubby wear it through the day to stretch it)

That hose is a problem, saw that the first night and increasingly seeing that but was thinking it was the lack of support straps on the Pilairo as it pulls as soon as I attach the hose no matter what direction the hose is so
thank you for the clip suggestion! At least that may keep the hose only dragging down...sure I can improvise something to give a shot tonight!
I haven't had any rain out even when I tried tying the hose up to the headboard and we keep the bedroom really chilly, but I did wake up to cold air blowing into my nose instead of warm. (was wondering why the heated hose wasn't heating until I thought about how the whole hose was out in the cold room instead of under the covers)
I guess I'm doing pretty well compared to some as I have kept it on every night and I plan to make this therapy work one way or another! Thanks you all for input! This group postings are so informative for newbies like me!

[Pugsy]

When I wore the Pilairo my nose also felt like it had ran into someone's fist and I had used nothing but nasal pillows masks for over 3 years prior to that... but I was able to finally use it and tested it for a couple of weeks.
I liked it okay enough but not enough to want to change from the Swift FX at that time.
If you are already wearing it right at the ears then that is as loose as it will go unless you can stretch it out a bit (hard to do) or maybe modify the strap a little.
Some of the forum members who really liked the Pilairo other than the strap being too tight went ahead and cut the strap and sewed in about an inch or two of additional stretchy material of some sort..probably doesn't even have to be stretchy.

viewtopic.php?f=1&t=79873&p=726707&hili ... ro#p726707
A lot of discussion about it here...long thread so take your time but a lot of hints there.

Hose management is a personal preference. I myself have never cared for suspending the hose in the air but a lot of people do like to do that and there are all sorts of ways to get it done.
Check out this thread with all the links for various ideas. You can make your own or buy one.
viewtopic.php?t=10640

[Pugsy]

Oh...tell me the model number off the bottom of your machine and I will see if we can figure out which machine you are using.
Your humidifier is a Respironics humidifier...so if a Respironics machine there will be a sticker on the bottom of the blower unit (remove water before looking) with a 3 digit number usually preceded by DS or REF..
Tell me that number and we can figure out exactly what you are using. The wording on the machines is vague at best.
Also on the same sticker will be an 8 digit number likely starting with 2012 or 2013...that's the date of manufacture in year/month/day format.

[cosmo]

This is where you find the model number.

[DJD52]

Thanks Pugsy!
I have no experience so it's hard to know what to do. I can't modify the Pilairo in any way at this time because it belongs to the medical supply co. I either give it back in exchange for something else before 30 days or keep it and modify it, but if I'd choose to keep it, I couldn't try anything else for 3 months.
The medical supply therapist stated he felt the pillows were just going to be a problem for me, period, and his recommendation was the Elan sleepweaver. Of course I'm not so sure but the key to success is to wear whatever I have. I've read so many posted comments in this group and it seems the Swift Fx is highly tolerated and you are probably right that it wasn't adjusted right. The only problem I had the night I used it was no lanolin so irritation in inexperienced nostrils. Shoot, at this point, whatever I can tolerate would be great!
I would just as soon not hang the hose up, but for me in the Pilairo, doing that decreased the drag on the mask. I will look on the machine for that no when I get back from an errand. Thanks again

[Pugsy]

Go ahead and modify the Pilairo anyway. It can't be given out to anyone else or sold even if you do return it.
Once a package has been opened and used it cannot be sold or given to another patient.....

Or just swap it out for a different mask right now...but if it were me...I would do some cutting.
Trust me...if you can make that strap a little looser your nose will forgive you and it will be worth it if you like the mask otherwise.

The cloth masks have their own set of issues sometimes...you will find that every mask out there will likely have some sort of issue for some people. That's just the way masks are. One man's treasure is another man's trash.
I can't help much with any mask other than a nasal pillow mask because I have never used anything else but there are a lot of forum members here who have used the nasal masks that can help you.

Nasal pillow masks shouldn't cause anything but very minor tenderness when properly fitted.
Your nose is sore right now because it is sort of bruised even though you don't see a bruise. The strap is too tight and that was the same problem you had with the Swift FX during the titration study.
So don't totally give up on nasal pillow masks just from a sore nose...if that is the only issue you have because properly fitted the nose won't get sore.

If you want to see the latest nasal pillow mask...click on the link for the mask that I now use.
If a person can handle a mouth guard...it's an awesome nasal pillow mask.

[kteague]

I see you're already getting direction on hose management, just want to add to consider any materials used so as to least stress the hose. A soft stretchy ponytail holder or a wrist sport sweatband are a couple examples. You want something that "gives" a little when tugged on so you don't end up with a ripped hose.

[DJD52]

As close as I can tell, model no of machine is: Remstar Pro 400P.
I read over the thread about the Pilairo. Interesting to say the least and am thinking YIKES, these don't hold up all that well and people did and are having issues with it pretty much the same as I am.
I stretched my headgear a bit by putting it on a helmet. Problem is that allows the whole mask to drag down even more when I attach the hose, allowing it to dig into the area under my nose and onto my face ( it seems there is little inflation there to protect my face) Therapist set the pressure at 6 so maybe it's too low for this mask. I am going to work up something to hang that hose above my head again tonight, and thanks to Kteague using a wrist band to hold the hose up there. I don't know why some said the air blows down at you through the vent when you do this as I did this before and simply turned the hose/vent upward and it stayed that way all night.(I improvised by putting the hose behind a spindle on the head of my bed but need a more stable set up as that still allowed drag to the sides when laying on my side)
I am noting that I have to be careful with this mask if rigging the hose up away from my face as that too can put pressure on the nose if it's not right. Piggy is bad, but for me the downward drag feels like someone whacked me in the nose too and the tenderness is still there from this morning.
When the med supply therapist calls back we'll have to discuss what next and when but I'm going to ask him if he dumped the Swift FX for her yet that he brought here originally.. Now that I know to use the lanolin I may do okay in the FX, and if not, there are always others but I think I'd prefer one that the hose goes UP as a choice right on the head gear. I really don't like that downward pull of the hose, but could just be it's just the Pilairo that is not stable enough to stay correctly for me once the hose is on. (facial shape maybe)
The one with the dental gaurd could be a problem for me as I have extreme TMJ, but I was looking at that.
Thanks again, will let you know how it goes tonight even tho my husband is trying to talk me into giving it a rest.

[Pugsy]

There is a Remstar Pro 400 model but it won't work with your System One humidifier that you have chosen in your profile
Look on the back of the blower right above the filter...do you see a little SD card or a big blue card about the size of a credit card.

Check out this thread for some visual cues to see if you spot what your machine looks like.
viewtopic.php?f=1&t=72302&p=665165#p665165

Model 450 and above you can use the SleepyHead software.
If there is a 60 in the model number then you have the new 60 series machines and you need a special Patch file for SleepyHead to work.

Model 450 is the PR System One Pro CPAP with CFlex
Model 460 is the PR System One 60 Series Pro CPAP (and it has CFlex but may not say it)

Model 550/560 are the APAP versions of the PR System One Auto CPAP machines

The model 400 machine hasn't been dispensed in several years...unlikely that a DME would supply it now.

[wardmiller]

Go ahead and modify the Pilairo anyway. It can't be given out to anyone else or sold even if you do return it.
Once a package has been opened and used it cannot be sold or given to another patient.....

Pugsy, where is that written? When I started downloading my daily data, I found my machine had been used for a week a month before I got it. When I talked to my DME, they blew a lot of smoke in my face: "we would never sell you a used machine", "the lab was just testing it", "when you finish paying for it, we will give you a new one", "yes, it was sterilized, and refurbished, so it is like new", etc. I did get the names of the various people I talked to, but they are snakes and I know I can't get the better of them.

[Pugsy]

Pugsy, where is that written?

My DME told me...we were talking about masks though. Once it has been opened they won't sell it.
I have got a few demos that way...unused but opened but free.

Machines now that is a totally different story. Used machines are sold all the time. Nothing to prevent it and other than telling someone a flat out lie...no law against it.

Masks are a different story because of the personal use contact thing. They can be given away if used or opened but not supposed to be sold again. Most of the time when a mask is returned to a DME...it goes in the trash.