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What SHOULD I expect from my CPAP provider?


#1

I was falling asleep at work and having trouble staying awake for the 7 mile drive home from work. Doctor sent me to a Pulmonologist who ordered a sleep study. I was diagnosed with severe sleep apnea and prescribed a ResMed machine. I was still in the adjustment period (2 months) and had a major stroke resulting in right side paralysis. The neurologist said I had 3 major risk factors for stroke 1 - the apnea, 2 - HRT, and 3 - smoking.

I spent the next year relearning how to use my hand and how to walk unassisted. I gained 50 lbs in that year.
As I was exercising to regain my leg, I experienced more and more pain, so they replaced my knee. I gained 20 more pounds.

Now, I am fairly functional, I can sew again (!) and walk short distances unassisted (by a walker). Am working on dieting (have lost 30lbs!). Haven’t had a cigarette since the morning of the stroke. I am afraid to NOT use my CPAP.

Over the almost 6 years I’ve had my machine, it periodically quits humidifying. They have replaced the tank twice and the humidifier side of the machine twice. A year ago, at my annual pulmonology follow-up, the doctor told me that my machine was pretty outdated and I should get a new machine when I complained about the humidifier. At that time it was 5 months short of owning it for 5 years, so the provider wouldn’t replace it. They replaced the humidifier side of the machine. It worked for about 6 months, then periodically would quit working. Some nights, most of the water was gone, some nights none of the water was gone. Now, it quits about every night.

At this years’ annual follow-up, the doctor submitted a new scrip (sent it to my provider) for a new machine. I called my provider, they said once it had made its way through the system, they’d contact me. After a month when they hadn’t, I called them again, they said come to their local office. I did the next day. They told me they couldn’t find a record of the scrip and besides, only had a pulmonology tech on Tuesdays, come back on Tuesday. I suggested they could have all the paperwork ready since they’d have a week to get it done and stood there until she “found” the scrip and told me stuff was missing, she’d contact the doctor.

I went in the next Tuesday and the woman had to “find” the scrip all over again. The tech plugged in the machine and it heated up, so said the machine is fine, they won’t replace it. I told her that it quits working most nights, she replied, “But it’s working fine”.

The lack of humidity is what’s waking me up at night, now. In 3 weeks, this machine will be 6 years old with me. Is this the way I should expect them to provide service? What are your experiences? I don’t know what to do.


#2

I would call and submit in writing a complaint that details the problem with your “old equipment” and how it adversely affects you. I have BCBS and from my understanding the machine I use will be paid off after 12 months. My deductible was not met so I am paying out of pocket (monthly) for the machine, but the amount due is discounted by BCBS - looks like the price I will end up paying is the price I see listed on various web sites. I have a ResMed auto air 10.

Do you have a HSA account? Strongly consider purchasing a new unit - your doctor will most likely provide you with a script for a new one, I believe a new one like mine is about 800.00 - not cheap but a small investment if you can swing it for your continued improving health.

Congratulations on smoking cessation as smoking is a major stroke risk factor. People don’t realize that OSA is also a significant risk factor. Excessive weight also contributes to OSA. Congrats on losing the 30 pounds and keep up the good work. Good luck.


#3

I recently had issues with the water in my CPAP not being used by the machine. I took it in and had a tech look at it and determined that the machine was fine. He told me that the machine senses the amount of humidity in the room and will adjust how much the machine will create. There are a lot of factors that play into this from what I learned. I sleep in a basement and my machine is by a window, so the air is already humid. I put my machine in a different spot and I turned on the heated hose and now the humidity being put out by my machine is much more consistent and I do not wake up with a stinging dry nose. I agree that you should be able to get a new machine after 6 years. But if you cannot maybe try moving your machine and turning on/ or up the heated hose if you have not. Hope this works out for you.


#4

I am on Medicare with a good supplement.

Thank you!


#5

We live in the Arizona desert, if humidity gets to 20% we all think we’re dying! :laughing:

The machine does not have (nor support) a heated hose. It still uses a card, I get no stats. It’s old.


#6

You need to have your doctor send the script to another supplier that he recommends. You should consider getting the ResMed AirSense 10 AutoSet for Her CPAP machine. There are many new masks out there. Look at the ResMed AirFit N20 Nasal Mask for Her or F30 Full Face Hybrid Mask. Of course, a heated tube comes with the CPAP machine. Your sleep doctor should be able to let you try different masks for a few weeks each.


#7

https://www.sleepapnea.org/treat/cpap-therapy/care-and-replacement-of-cpap-equipment/

You should be eligible for a new machine.


#8

Well, to put it bluntly, that sucks… I am so sorry that they are putting you through this, but I would recommend that since you have Medicare primary, maybe get a little more assertive. I have Sjogrens and asthma, and absolutely require the humidification… Medicare has some strong requirements for their recipients. I hope there is no issue with a link in here:
https://medicare.com/coverage/does-medicare-cover-sleep-apnea-equipment/

This is just a starting place… I read several places that Medicare has not changed their policy on every five years replacement. If the machine is broken or you go to a new type (like from CPAP to Bi-Pap), or it would cost more to fix than replace, then they will do it sooner.

Honestly, it sounds to me like you need to find a supplier than actually wants your business…


#9

Chisteve is right. It is time for another supplier. And I LOVE the Airsense 10… I’ve only been on CPAP for five weeks, but it has made such a HUGE difference in my life - Much better energy, less pain, more motivation… I use a nasal mask with mouth cover (I’m a nose breather), and the heated humidifier. It really gives me a good nights sleep unless I am sweating too much. Let us know how things go Nancy. You are not being treated right my friend…


#10

Thank you all for your input!

I was thinking about this, Medicare has actually not paid for the machine or the sleep study, I was on other insurance when I got those. We transitioned to Medicare about 2 years ago.

On Tuesday (when their tech is in :roll_eyes:), I intend to take the machine to them and request they actually run the machine for 6-7 hours. If they won’t comply then, I will find another provider.


#11

The ASAA hasn’t started doing this yet, but we really need to. . . call on your behalf. Some of the stories we hear are so frustrating. Easy for us to want to blame the supplier, but truth be told they have to follow policies developed by the payer, and that is where the complications start - no two payor’s policies are the same, and then change regularly! Argh! New rule and policies have cut 40% of the suppliers out of the system, so now there are fewer to serve an ever increasing number of patients. Not good. Please tell your supplier when you see them that the American Sleep Apnea Association is very interested in how your story turns out, and that we are more than happy to make a call on your behalf to find out what is going on.


#12

Hi Cstep - Nice idea but HIPAA (Health Insurance Portability and Accountability Act) prevents them from discussing anyone’s health with anyone other than the patient unless specifically named as allowed. But maybe it will get their attention?