Feeling Anxious

I have finally been able to have a sleep study done. I went to the Ghaly Sleep Center. Because of where I live they had 3 choices of where to have the test done and one of them was a local hotel so I chose that. They found I have sleep apnea and sent me for the 2nd CPAP study. The 2nd study with the CPAP machine was awful. I don't believe I slept very much. The mask kept leaking and I just kept holding it and pushing it up/down etc. I would get it fixed and then relax my face and it would leak again...ugghhh. I'm sure it will be better with my own machine and not having those stupid electrodes all over my head. The lab tech was a very nice young man, was friendly and professional. He gave me the hose and mask that I used to bring home. It is a ResMed Quatrro Air Full Face Mask.

I have an appointment with my DME, Lincare, on Tuesday to get a machine. This is the DME that supplies my oxygen concentrator that I've been using since last November, currently only using it at night when I sleep. I asked what my prescription said (the sleep lab would not send it to me, only directly to the DME), was told it said to provide a CPAP machine with all supplies and the setting was to be 9. I will be requesting a photo copy for my records when I go Tuesday. I tried to find out what kinds of CPAP machines they have to offer but wasn't given a whole lot of details by the person that I spoke to on the phone. She said they have 2 set ups to choose from, one is a Respironics (no other details), the other was a Resmed S9 (no other details). She did say that the hose, mask and humidifier were included and the set up would cost me around $400 given that I have a 50% coinsurance. So, I'm hoping this set up is worth the $800 that they are going to be charging.

I've been trying to read here and gather info on what is available out there before I make this purchase, not that I'm going to be given much choice in the matter. I'm not sure I want to use a full face mask. I get stuffy sinuses a lot and have to use Flonase twice a day and take an allergy tablet nightly as well, still get stuffy. The pressure I felt from the mask on my sinus cavities on either side of my nose was not very pleasant. When I get really stuffy I am sure I'm breathing with my mouth as I do wake up dry quite often, also a problem due to meds. I see that some people tape their mouths closed but I cannot due that, I'm allergic to most adhesives. So, I was thinking I might see if I can try that hybid type mask with the nose pillows that also covers the mouth. I'm used to having a nasal cannula in my nostrils right now due to using the oxygen so maybe it wouldn't be too much of a stretch to get used to that type of mask.

Does anyone here have any idea feedback on how Lincare is about supplying this equipment and the follow up support they provide?

Thanks !!!

If they think you feel you don't have much choice in the matter of the machine, then you won't have any choice. This may require you to step outside your comfort zone and be assertive about your needs (not necessarily aggressive - just nice and firm) to make sure you don't get a brick. Remember that you don't need to buy anything from this DME. You may also have the option of using other DMEs (this should depend on your insurance, not on your doctor - granted most doctors have preferred DMEs, but it is you and your insurance who are paying for this). You just have to make sure the DME realizes that if they don't make you happy, you won't be buying anything from them.

You sound like a really nice and accommodating sort of person. It is okay to be nice, but you can't be accommodating in this situation. Your health depends on you making sure they meet your needs.

Oh, trust me, I can be a real witch when necessary LOL

I really need to have a copy of the prescription in my hands and see what Lincare is set on providing before I can even have an intelligent conversation with my insurance company. All they can tell me right now is that I'm covered 50% for DME. I do have a 2nd DME that I could probably use if necessary, I have recently obtained a mobility scooter through them.

So, I'm just really anxious waiting and waiting and waiting some more to get this therapy going. My doctor started all this back in February, changes in insurance etc has caused major delays. The first study was 6/30, the 2nd one was 7/29. I had to call the sleep lab other day to find out what the heck was going on as I had not heard from them.

Check the links in my signature line for how to not get screwed by the DME.

Most importantly, find out which DME's are "in network" for your insurance. If you don't get what you want from one DME, go to another DME and see if they'll meet your needs.

It sounds like you might want to purchase mask liners from your DME as well...I started this journey on Quattro Air and it is one leaky mask, but with liners I was able to greatly minimize the leaks.. many people also use them to protect their faces from sores and/or strap marks. You can also order liners from the sponsors of this forum at https://www.cpap.com, but you would have to wait for delivery. If you get some RemZzzzs liners while you're getting the rest of your equipment you'll have them to start out with and it might be easier for you to adapt with the added comfort.

Be sure to know you machine models to make sure you can hold out for a full efficacy data machine.
In the Respironics line you want at least model 460 or higher. The model numbers are on the bottom of the blower unit and may have REF or DS in front or behind the 3 digits. Respironics model names can be confusing unless a person knows what they are seeing exactly and that's why I suggest that people go by model numbers.

In the ResMed line you want either at least the ResMed S9 Elite or even better the AutoSet. ResMed makes it easy to know the model as the model name is clearly stated on the blower unit up by the LCD screen.

Your insurance pays the same for a brick as it does for a full data machine but DMEs push the bricks and tell people that their insurance won't pay for the full data machine because then they make more money on the cheaper brick.

Read this if you haven't already
http://maskarrayed.wordpress.com/
http://maskarrayed.wordpress.com/what-y ... me-part-i/

And actually you can call your insurance company ahead of time. They can confirm that they pay by HCPCS code and not brand or model and it gives you more ammunition if the DME tries to supply the brick machine.

Thanks for the info everyone. I've made myself some notes to take with me.

I wasn't to sure about the full face mask either. I LOVE MINE. It's has made such a difference in the way I feel. The nasal masks had me feeling like I was unable to breath. Even changes to the EPR didn't help till I changed mask's. I get stuffy too and this has helped me a lot. You should have a mask change for 30 day's if you have the RESMED mask's. I have done this 3 times now with no problems. Good Luck. Glad you found this place before you bought your machine. Thanks God I didn't get a total brick and do have some information from mine. By the way my DME told me they don't do the S9 Auto's only the Escape Auto. Now I know why. More money for them.

What a racket....I hate insurance LOL. So, I went to the DME this morning. Of course nobody ever has $ answers because the insurance is so complicated and they don't do the billing there. :::sigh::: Cost me $327 today. Then it will cost me 1/2 of the CPAP machine rental for the next 10 months and 1/2 for any supplies I need. You would think that they would just outright buy the machine after all the money they have paid for the sleep studies it just seems kind of stupid to worry about another $700 or so. At least I got a good set up and not a brick !!!

At any rate....the fella that took care of me was nice enough. Not sure he was really a respiratory therapist. But he did have the sleep studies there in his file and he did make a comment about my not getting any REM sleep at all during the first study. I said I thought the nasal pillows might be an option for me since I am already used to a nasal cannula...nope, he didn't think so. So, he fit me, sitting up, with a Mirage Quattro. We closed up the leaks but I'm sure it's going to leak as soon as I lay down. He made sure to tell me more than once to call him if I had any problems. He told me not to use my oxygen and to discuss that with my PCP next time I see her, which will be in a couple of weeks. He also said he would be contacting me in about 2 mos so they can get the SD card so they can report compliance to the insurance company. He said he thinks I'm going to have a hard time with this therapy. Not exactly the motivational comment I was looking for LOL

So, I wore this thing for a little bit a short time ago while sitting here, cause he told me I should do that to help get used to it. One of my cats just sat here and stared at me, she had no idea what to make of it all. I just took my muscle relaxer and will be off to bed shortly for my first night of this new adventure

PatW wrote:I said I thought the nasal pillows might be an option for me since I am already used to a nasal cannula...nope, he didn't think so.

Did he say why he didn't think so?
Can you normally breathe through your nose just fine or do you have significant issues with nasal congestion to the point you can't get the nose cleared up enough to move enough air through the nose?
Was it a pressure thing? Did he say your pressure was too high? If so that's hogwash. I see pressures over 20 cm nearly every night and I do just fine with nasal pillows.

And yes....fitting a mask while sitting up doesn't mean squat. Your whole face changes when you lay down.

The air pressure isn't bothering me so much as the pressure on my passages from having the weight of the mask on my face. I have COPD and breathing without the mask and sitting up can sometimes be difficult for me and I gasp for breath. I am taking Spiriva each morning for the COPD. Closing off my nasal passages to any extent just makes it worse. When I have the mask on my face I am feeling like I'm suffocating but it's not from the air pressure, it's the feeling of not being able to draw that air into my lungs via my airways. The clostaphobia doesn't help much either but I think I can be OK with that as I did get some sleep when I used the mask during the 2nd sleep study. But, I kept having to push and pull that mask and I think I was holding it most of the night.

I don't see a place where I can change the humidity level on the machine. I can change the temperature. But not sure any of that matters when the air can't get into my passages to begin with.

Needless to say, I eventually ripped the damn thing off so I could breath. If I can't breath I can't fall asleep so it wasn't doing any good and I had to get some amount of sleep because I had to get up this morning and drive my daughter to band camp. I think I might try taking a nap with it on this afternoon while sitting up in the recliner.

What are your pressure setting(s)?
Are you using the ramp feature?
What temperature are you using for the humidifier?

If you can only change the temperature on the humidifier it sounds like you have the Climateline heated hose and it's set for automatic 80% humidity delivery. That's the default setting for when the Climateline is attached. There is a way to change it so that you can choose both temperature and humidity delivery (1 through 6 with 6 being the highest humidity).
You have to go into the clinical menu setup area and take it off of "automatic".

The pressure is supposed to be 9. I think the ramp was set at 45 mins. I can't remember what temp I had it set to last night but it was too warm for me. I had to have a fan blowing right on me, but that is true most nights.

OK, so a friend of mine has a cpap machine that she's had for 7 years. Just laying around gathering dust as she quit her therapy right away. I asked her what size mask she had and she said she would bring it over for me to try. I was thinking that maybe if she had a larger mask it might be a little wider and not be pressing on my sinuses.

Her daughter just came over with it and it's a ResMed Mirage Swift Nasal Pillows System. I need to clean this up really good and then I'm going to try it. Tonight I'm going to relax as I've had a very stressful day. No cpap tonight. My birthday is tomorrow and I've promised my daughter we would go to the State Fair. So, no more thinking about this or the doctors or the insurance companies or the soc sec disability process (or lack thereof LOL). Friday will be soon enough to clean this up and figure out how to use it and try to resume my therapy again And if my boyfriend tells me one more time that he thinks I'm just afraid of the mask because of my claustrophobia I may just explode !!!