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What's the one thing you wished you knew when you first started XPAP treatment?
I just started 3 weeks ago and I'd love to get the tips from all of you. For example, after a few nights...my mask was leaking a ton. (I'm still not sure it fits correctly..) but I think my problem was my night-time face moisturizer. So.....now I go to bed without any moisturizer....and that seems to help.
What do you wish you had known when you first started out?
What do you wish you had known when you first started out?
Views: 185
Replies to This Discussion
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Permalink Reply by Judy on
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Melba, try http://www.padacheeks. This gal makes some great (and beautiful prints) pads for the cheeks, the bridge of the nose area, the forehead and hose covers. SOFT, comfy, AND pretty. Prices are reasonable too.
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Cathy s said:Im not sure that this is where I want to put this answer or not but.... I wish I had known the cost of those masks!! I have excellent insurence and have had no problem with getting my supplies. The ins bought my machine and every 6 months I get a new mask. Last month I got a new mask and as it turned out it was defective so today I was talking to my provider and they are telling me that ins said they wont pay for another one this soon even though its defective. So I asked how much it would cost me to buy one and she said they retail for $800!!! I just about fell out of my chair! I swear I will NEVER again throw one away. I have been throwing them away every 6 months for 9 years!! So here is my new plan. Im going to start keeping my masks and if there is anyone on here that has no ins and cant afford masks I will share. All you will have to do is get a new liner.
Assuming you are in the USA your current DME supplier is "less than truthfull". Its too bad you threw that defective mask away. If my local DME supplier gave me that line of horsepuckies I'd have gone straight to the manufacturer of that mask and not only informed them the mask was defective but would also have told them who this DME supplier was. Even from a local DME supplier that price they quoted you was OBSCENELY EXCESSIVE and in all likelihood another "less than truthful" statement! MOST insurances will pay to replace a broken or otherwise damaged mask or other piece of equipment BEFORE the usual replacement date. When in doubt about the trufhfulness of any information regarding your insurance benefits, call your insurance to verify. Too many local DME suppliers are either ignorant (I'm being generous) or less than truthful (I'm being generous again).
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Mary J said:Thanks so much, Mike. I think another obstacle that is frustrating me is I'm not sure how much my mask is leaking....but my machine was purposely set up not to give me that data. (The data is there....and I've figured a way to get it....but now I need to learn how to interpret the data.)
When I go back for my first checkup I will address this with my doctor. I think he will work with me. This is my health and I believe in learning what is going on with my health and sleeping patterns. Thanks to this site - I learned about Dr. Park's book and I ordered that last night. I do appreciate seeing how much there is to learn here! THANKS!
What brand and model CPAP do you have? We may well be able to tell you how to access that data. Good on you for realizing and insisting that it is your health and educating yourself about your healthcare options and that you take an active part in the decisions made and therapies adopted!!!!
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first time i used my cpap i hated it but the next night it got better now i dont love it but it works and go to bed and sleep wake up happy refreshed not falling asleep. they made me use a mouth strap to keep my mouth closed but i look funny and scare small Children ps if mask leaks pull the straps and stick with it.
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Permalink Reply by Mary J on
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I'm so impressed with all of these comments. THANKS to all of you.
My machine is a Respironics M Series with A-Flex Auto-Adjusting CPAP
My mask is the Mirage Quattro Resmed
I love the suggestions for the pads....the bridge of my nose has a mark all day long....I also like the idea of covering up the tubing...and simply learning so much from all of you. (I have so much to learn!)
I was really sad about having to use this process (I don't know anyone who uses XPAP at all) and you all have really helped me to turn my thinking around! I feel so fortunate that you are all so generous!
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Permalink Reply by PD Laire on
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the one thing I wish i knew from the beginning is to keep copies of all prescriptions and all sleep studies.
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I have a Resmed and have never used any Respironics M Series model so I can't be much help. But I do know that Respironics makes a patient version of their professional software called EncoreViewer. You also need a specific cable reader to utilize the software. You can then download your data from your M Series Auto to your computer. Until you can purchase the software and cable reader (insurance doesn't pay for them) your DME supplier should be able to do a data download and printout for you. Most will do so at no charge. Some will charge for it. Nothing venture, nothing gained, you might as well ask. If and when you opt to buy to software and cable reader out of pocket be sure to shop for them online as there can be quite a price variation..
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Well my provider finally showed up and looked at my mask and she was able to fix it so guess it wasnt too defective. But I asked her a second time about the price and she said they retail $800 but for insurence companies they only have to pay $110. I also wish when I had started this that I had known the dr I went to was an uncaring ass!! I went to his office once and was seen by a nurse practitioner. Then I went and had a followup about 6 months after my study and the dr said your next follow up will be in one year and we will call you to schedule it. They never called.back so after awhile I realized that it had been awhile and they hadnt called so I called there. The receptionist asked if I was having problems. I told her no it was just time for a followup. She told me if I was not having problems there was no reason for me to be calling. Ive had my cpap for 9 years and have not seen the dr that prescribed it since 6 months after I got it!!
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Permalink Reply by Woolfey on
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I wish the support folks I contacted... (Insurance, doctors office) were more truthful about the cost.. In my area there is a Sleep support group at one of the local hospitals.. I wish I had gone to a meeting as soon as I was diagnosed so I would have known if I should have pushed for a certain DME supplier... When the rotation DME called me looking for 750 dollars over an above the allowance I freaked.. Told everyone on down the line that I had been mislead about the cost and that I was absolutely incensed that I had been put in a situation where I wasted competent Folks time that I wouldn't have if I knew the actual cost to me.. Miraculously the DME supplier offered a "reconditioned machine" for the amount that My Allowance would cover.. Looked brand new to me... BUT if I had been approached by the supplier and asked about my lifestyle ... I would have been able to get a machine that runs on 12 volts instead of having to buy an inverter ... This is supposedly being addressed the next time.. and My Doc is supposed to be arranging the time element so that My Allowance will cover it over a two year period...
I would just as soon get my machine myself but then I would be unable with my insurance to get any help with supplies..
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Permalink Reply by April Reeves on
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Okay. There is so much useful information in this thread! I've had customers with issues with the mask not fitting properly..I had no idea you need to be lying down when you put it on! And geez. the moisturinzer making it slide is something I should have thought about since I used to sell that stuff. Thank you for all this great information!!
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Permalink Reply by BeeAsleep on
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I wish I wold have know about this forum BEFORE my sleep study. I had so many questions and was so fearful of what having to wear a mask might mean for me. This forum has helped me fit in with others that have this problem. I have been able to ask questions and get immediate answers for other patients and professionals. It is an amazing source of comfort to me.
I wish I would have know about mask options BEFORE I was given the full mask that I could not wear. The Swift LT nasal pillows are so prefect for me, I don't mind it at all. I just have to get the right machine for my mixd sleep apnea. And you guys have been so helpful with that as well.
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Cathy s said:
CathyS, since you've had your current CPAP for 9 years your insurance should be willing to purchase a new one for you. Usually they will pay to replace them after 5 years. Since your current CPAP is still running so well it would be worth keeping as a backup and/or travel xPAP and meanwhile depending on your copays and annual deductable you might be able to get a fully data capable APAP or CPAP. You would need a new script, but if you have a good rapport w/your family doctor he/she could write the script for you. Something to think about.Well my provider finally showed up and looked at my mask and she was able to fix it so guess it wasnt too defective. But I asked her a second time about the price and she said they retail $800 but for insurence companies they only have to pay $110. I also wish when I had started this that I had known the dr I went to was an uncaring ass!! I went to his office once and was seen by a nurse practitioner. Then I went and had a followup about 6 months after my study and the dr said your next follow up will be in one year and we will call you to schedule it. They never called.back so after awhile I realized that it had been awhile and they hadnt called so I called there. The receptionist asked if I was having problems. I told her no it was just time for a followup. She told me if I was not having problems there was no reason for me to be calling. Ive had my cpap for 9 years and have not seen the dr that prescribed it since 6 months after I got it!!
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