Having mask problems (possibly due to stomach sleeping?)

[GumbyCT]

I'm just not understanding why getting bigger pillows would help. If my nose is small, why wouldn't I need the smaller pillows? Bigger ones aren't going to fit.

Your DME can explain it much easier.

[jules]

really she needs a different mask to allow her nose to heal

perhaps some nasal cover would work unless she is mouth breathing and then she needs a FFM - perhaps she can post her data off her LED or off the software for us to look at and see her leak information

[DottyG]

perhaps she can post her data off her LED or off the software for us to look at and see her leak information

LOL! Perhaps someone could talk to the DME who took the datacard and get him to actually GIVE me the leak information! I'd like to see it, too. I called him yesterday and asked him to give me that and the results of the pulse oxymeter they did a week or so ago. He said he'd check on it and get back to me. (cue the crickets here, because I didn't hear back from him)

I know I have to be my own advocate. I know I have to be in charge of all of this. I know I'm the only one who can really take care of all of this mess. But, can I just say that I'm really tired of having to be my own doctor, DME AND patient? I can't keep up with the doing everyone's job thing. I'm too tired.

[KatieW]

Dotty, I don't use your mask, so can't help you from my personal experience.

But, if you click on this link, there are a number of mask fitting videos for the Swift LT. It should show you how the nasal pillow are supposed to fit:

http://www.resmed.com/us/products/swift ... s&sec=true

[akcpapguy]

Jules,

Unfortunately I don't think there is anything illegal about them pulling the extra pillows, however I am not a business legal expert so take that for what it's worth. I do know that all the insurance cares about is that the patient got all the parts they were billed for. Is it unethical, YES i feel that it is, that's why we don't subscribe to that practice either. Infact i rarely fit a patient for pillow size, rather I encourage them to go home and try out the different sizes and GET INVOLVED with their therapy and THEIR equipment. Ofcourse if a patient really wishes I will hook them up and we will try them out together and decide on a size. I found out more often than not people were getting into the mind set that Dotty is somewhat in, I would call people for followup and they would not be using their CPAP. When I would inquire why they had stopped they would say, "The pillows (hurt, leaked, didn't fit right, went to far into my nose, etc.)", I would ask them if they tried the other sizes in the package, and they would reply "No, these are the ones you told me to use so why would I try the other ones?".

Dotty,

Sorry to use you in the example, but I sense that you are somewhat along the same mind set when you asked "If my nose is small, why wouldn't I need the smaller pillows?". I know there was more to the statement, but this was what stuck out to me. Bigger pillows MAY conform to the shape of your nares in ways that the small pillows can't because of their size limitations, without sitting down with you and seeing the how the small pillows interact with your nares it's difficult to give you a solid answer, other than to say, "It's worth a try". Unfortunately for you that may involv some cost on your part due to the policies of your DME. I would also recommend what Dotty suggestion about a nasal mask until your nares heal, i have had ALOT of success over the past months with my patients who are using the new Easylife mask from Respironics.

[DottyG]

I would ask them if they tried the other sizes in the package, and they would reply "No, these are the ones you told me to use so why would I try the other ones?".

Dotty,

Sorry to use you in the example, but I sense that you are somewhat along the same mind set when you asked "If my nose is small, why wouldn't I need the smaller pillows?"

The thing is, this actually isn't my personality. I'm the person that doctors hate, because I'm going to question everything. I don't take a med without looking it up on the internet and talking to the pharmacist about it first. I'm going to look up a diagnosis before I accept that I have the condition. I'm the person who's going to question the medical profession and insist that they make me a PARTNER in my healthcare. I'm fighting a doctor right now who's balking at that, in fact.

But, with the sleep apnea stuff, I think I'm just so weary of it all at this point that I'm finally just giving in and hoping that the people that I have that are supposed to be knowledgeable and helping me actually tell me what I'm supposed to do. I feel like I'm in this ocean of information (seriously, take a look at this site sometime and think about how it feels to be relatively new to all of this - there's so much information here, there are so many opinions here, there's so much going on that it's just overwhelming). So, I need someone who knows what they're doing to take the oars in this ocean and show me a way to go. I need the DME, at the very least, to not be jerking me around or telling me things that aren't quite right. I need at least one person who has some skill in this area (because I don't) to cut through everything for me and help me make sense of it all. And, to cut some of my choices down a bit to a more manageable level. There are so MANY choices of machines and masks and pillows and beds and sleeping positions and...... I need a smaller number of everything to choose from.

Ok, as I was typing this, the DME headquarters called me (how ironic is that?!) She's going to get the download done for me and get copies to me and the doctor. I told her about the problems with the mask, and she's going to get my local DME to come out and try out some different masks on me.

[GumbyCT]

Ok, as I was typing this, the DME headquarters called me (how ironic is that?!) She's going to get the download done for me and get copies to me and the doctor. I told her about the problems with the mask, and she's going to get my local DME to come out and try out some different masks on me.

There ya go - they are willing and able to help.

You just have to let them know you need help

Good Luck & Keep us posted.

[fiberfan]

I'm the person who's going to question the medical profession and insist that they make me a PARTNER in my healthcare. I'm fighting a doctor right now who's balking at that, in fact.

There are a few doctor's who like patients like you. I have been lucky to find several over the years. It is very frustrating when you have a doctor who doesn't want this. Good luck with your situation.

But, with the sleep apnea stuff, I think I'm just so weary of it all at this point that I'm finally just giving in and hoping that the people that I have that are supposed to be knowledgeable and helping me actually tell me what I'm supposed to do.

Most (all?) of us can understand that how it feels to be so far past tired that exhausted would feel good. That weariness will effect different people different ways, it is good to let others know need help wading through the large amounts of data.

Ok, as I was typing this, the DME headquarters called me (how ironic is that?!) She's going to get the download done for me and get copies to me and the doctor. I told her about the problems with the mask, and she's going to get my local DME to come out and try out some different masks on me.

Sounds great! Please let us know how it goes. Hopefully you will get a mask that fits better.

[akcpapguy]

Ok, as I was typing this, the DME headquarters called me (how ironic is that?!) She's going to get the download done for me and get copies to me and the doctor. I told her about the problems with the mask, and she's going to get my local DME to come out and try out some different masks on me.

LOL good news, I promise I don't work for your DME chain, I'm about as far away from Texas as you can get and still stay in the US.

[DottyG]

Well, the lady I talked to is willing to help me. But, when things trickle down to the local level, sometimes things change!

[GumbyCT]

Well, the lady I talked to is willing to help me. But, when things trickle down to the local level, something's things change!

If you call corporate enuff times that WILL change.

Or find a DME trained by CarbonMan

[ka-ann]

Dotty,
Be sure you try the masks lying down too. They fit differently sitting up and lying down.
Good luck!! I hope you find what you need to help you!
Karen

[DottyG]

This morning, I took my mask off, because I thought it was time to get up. It wasn't; it was only 4:00. But, I guess I was so tired that I fell back asleep before I could put the mask back on.

Later, I did get up to go to the bathroom. When I came back, I was going to lie down and doze a little while longer. Normally, I wouldn't bother to put my mask on, but this time I did. I'm going to consider that progress.

Ok, I need y'all's help kinda quickly. Since it sounds like they're going to let me try a few masks, I need some ideas on what to tell him to bring me. I'm hoping that he calls to set up the appointment today. My assumption is that the plan is that I'll try one, see if it works for a week and then maybe try another one.

I can't give him a list of 100 masks. I need to narrow this down to about 2 or 3 that sound like it would work for me. I know that's a hard thing to ask, but I need to think of just a limited few to start with, rather than the whole assortment of masks and headgears that are out there.

So, what are some suggestions if I 1) am a primarily stomach sleeper (by that, I mean that I'm on my stomach with my head turned to the side (usually the right side) - honestly, while my arms aren't in the same position, my legs are pretty much in the Falcon Position), 2) have a small nose and nares and 3) seem to get so relaxed that my mouth opens a bit (I don't think I mouth breathe, exactly, but I do think there's air leaking) and am currently wearing a chinstrap?

[melissa1974]

I have been having great success with the Comfortgel Nasal mask, along with taping my mouth. Of course, you can also use a chinstrap is fhat works for you. I almost always have a leak rate of 0.0, and never more than 0.23 L/s. I also sleep almost completely on my stomach with my head turned to my side and with this mask, I am quite comfortable and getting great AHI/AI numbers, too.

For the record, I tried the Mirage Quattro, Mirage Liberty, and Comfortgel Fullface masks before this one with mixed success with each. The Comfortgel full face mask is my 2nd choice and is also quite comfortable, although I always have a little more trouble with leaking when I wear it. Not a ton of leaks, but more than with the nasal version.

Good luck! I know how frustrating it is to find the right mask!

[DottyG]

Thanks for the suggestion!

He's coming about 4:30 today to bring another mask. I told the lady who scheduled it to ask him to bring the ComfortGel Nasal Mask. We'll see if he can get one to bring.

Keep coming with suggestions. I'm determined to try masks out now and see what works. Before, I felt like I was stuck with what I had. I'm at the point that I'm going to try something new.