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[Treatment] Is it possible to handle this without a local supplier/respiratory therapist?
#1
Hi...I was diagnosed with severe sleep apnea and have been using my CPAP machine for about six weeks. I am currently using nasal pillows and it is really hard to to breathe. I have tried a face mask (did not fit) and a nasal mask (I could not unhook it, resulting in a major panic attack). I asked the respiratory therapists / suppliers for an x-small pillow, but they tell me that the fit is fine, there are no leaks and this is normal. In fact, they contacted my doctor and told him that I felt I needed more air pressure (I didn't ask for this) and now it is even more difficult to exhale and my chest hurts just like after an asthma attack.

I am beginning to realize that it is not just the mask that is problematic. The last phone call was today and I was told that I would have to pay for the mask myself as my insurance will not pay for another mask. That was the high point of the conversation. When I began to question the fact that they would disassemble the package and sell the headgear and pillows separately, artificially raising the price, I was told that he told himself before calling me, that he would not let me upset him, but I was trying to do just that and I must speak to the manager from now on.

I have checked into moving to another supplier, but have found out that because there is a contract in place, I would have to turn in my machine and the new supplier would have to take a loss, which they are not too eager to do. I am feeling rather stuck between the proverbial rock and hard place, as there is 11 months left on the contract for the machine. At this point, I don't want is to deal with these people again and I would like to take control over my own treatment. I would really appreciate any wisdom, insight and encouragement. Thanks!

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#2
Yes. Of course you can handle it yourself.

First step. If you do not have it already, get a copy of your prescription. Call the doctor's office and tell them you want a copy for your own records. Make sure the prescription mentions machine and mask and supplies. It does not have to list a specific item.

Second step. If you have not done so already, download a copy of the clinician manual for your machine. Read the manual. Figure out how it all works. My bet is the exhale relief is set too low for you which makes the exhale difficult.

What does the contract mean? Who is involved in this contract? I would assume the insurance company? So that means the insurance company will only pay for machine supplies from this supplier and no one else? Mask supplies too?
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#3
Welcome to Apnea Board, Lani. If you haven't done so I suggest you talk directly to the insurance company and don't rely on what the DME tells you. They don't have a stellar reputation for looking after their client's interests.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
Welcome to the forum Lani! Good luck getting everything sorted out!
APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
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#5
(12-10-2015, 07:18 AM)DeepBreathing Wrote: Welcome to Apnea Board, Lani. If you haven't done so I suggest you talk directly to the insurance company and don't rely on what the DME tells you. They don't have a stellar reputation for looking after their client's interests.

What I diplomatic phrase! Thanks for the morning smile I needed it Smile
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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#6
Welcome Lani..
You are between the proverbial rock and hard place.
Because of your SA you are fatigued and not at your best to argue with people who don't want you to bother them. BTDT. Add in that the sleep industry as a whole sees you as a cash cow and not a human patient. Many have stated including myself have stated they get better sleep care from their family doc. May I suggest you just start reading here and see if you don't see a lot of people with the same issues. This will give you hope and you are not alone.
The next thing to do is find out if your machine is data capable with SleepyHead. archangel has a post where he tells you what machine are and are not.
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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#7
Yes you can buy masks online, use software to titrate yourself, and just let your insurance pay for the machine you have.
Easiest way is to just use your GP or nurse prac to write any scripts you need.
You can set your own pressures also.
Insurance only cares about compliance.

Im on medicare and i have not seen the sleep doc since my initial diagnosis.
Set my own pressures since sleep lb was wrong and have my GP handle any scripts for masks, etc that I need.
DME just files the scripts and stsyd out of my way.

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#8
I think you should be able to purchase just the x-small pillows for about $20 from most of the suppliers online and they would work with the rest of the assembly. Give one of them a call to make sure that they will work with what you have. That way you can resolve the size issue yourself at minimal cost.
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#9
Hi Lani,
WELCOME to the forum.!
Much success to you with your CPAP therapy and good luck to you with finding a supplier that will work with you.
trish6hundred
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#10
(12-10-2015, 01:43 AM)Lani Wrote: I have checked into moving to another supplier, but have found out that because there is a contract in place, I would have to turn in my machine and the new supplier would have to take a loss, which they are not too eager to do.

That doesn't sound right to me. Who told you this? Call your insurance company and tell them you're getting masks that have been opened by the supplier and have had parts removed. Call other suppliers and tell them what's going on. Find another machine on craigslist and return the one you have. You'll want a back up machine, anyway.

As for the raising of the pressure to overcome the suffocation feeling, I'm not a big believer in that strategy. The pressure is already higher than what you'd have if you removed the mask! It's an airflow issue, not a pressure issue, and it's caused by the unfamiliarity of wearing a mask. Acclimate by wearing the mask when you're awake and relaxing.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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