Your Cpap Buying Experience?

[astraith]

So I thought I put my story down and apparently I did not ... so here is what my experience was!

So, Jan 2015 I was diagnosed with Sleep Apnea .... and I was sent to a DME. The guy was ready with a ResMed S9 AutoSet and H5i. He did explain the features, sat down with me and made me turn the system on and put the mask on me. He wanted to make sure he had the right size and that I was use to it.

However, I did fall out compliance, and about a year later my insurance and work made a big push about sleep apnea. I then, because I had a girl friend again and she knew I had sleep apnea pushed me to try again so i went to the doctor to see if I can figure out ways to solve issues I had before (the mask kept falling off and the full fask mask was uncomfortable).

So sometime in 2016 I was again went through another sleep study (one at home and one at the doctor's office over night). They then sent me to another DME where I went ahead and was given another machine (A System One Apap FLEX machine, I believe).

It was after this visit I started looking into CPAP machiens and seeing there was a lot of choices. I wondered why I wasn't given any options -- especially now I am comparing the two machines I have and I like the cool mist feature my older ResMed has but I don't have that on the newer machine (which is the machine my doctor wants me to use). To me, it's frustrating that I am going to have to use the "newer" machine even though it hard for me to get use to. Also, it appears the heated humidifier might be broken.

Which if it is, my DME told me we can't fix it because they don't make the parts any more (though I believe online I can pobably buy it).

So that's why I wanted to ask this. To see if this is common -- you are just given a machine and you can't shop around -- or is this a unique experience? So far it seems not to be unique.

[jaswilliams]

Ok I am going to Join the party.


I am in the UK under the NHS my wife was complaining that I was stopping breathing so I mentioned it to my GP last July. I was referred to my local hospital Lung Centre (30 miles away) they set me up with an overnight home study.

The home study results were analysed and I was issued with the only machine that Somerset NHS will issue a Resmed S9 Escape (A Brick) set to a fixed cpap pressure of 8. I work away flighing to Ireland every other week. So I decided to get myself a second machine for use in Ireland. I self purchased a Resmed Autoset 10, this machine showed my apnea was not being treated adequately with an AHI of between 10 & 30 with nearly all events Hypopneas and Central Apnea. I showed my figures to the sleep nurse at my 30 day follow up I was then booked in for a hospital overnight study using my machine, that was the first week of December. I had the results of the study confirming I have complex apnea and I am still waiting for the follow up appointment at which my letter stated I would be issued with a BiPaP for a month trial if that does not work the trust will be requested if they will fund an ASV. Still no appointment despite phoning the doctors Sec and chasing.

I decided to purchase a used 6yr old (24 hrs usage) Resmed S9 Adapt ASV from the US at a price I was happy with and self titrate I now have an AHI <1 every night.

[Sleeprider]

Jaswilliams, a very important story, showing why the data can play a pivotal role in therapy and why dumb bricks should never be issued to individuals without clinical titration.

[jaswilliams]

I know hindsight is an easy thing but reviewing my at home study half of the events were flagged as CA & Hypopnea the rest was obstructive... so whilst my AHI was halved with standard Cpap treatment I was far from treated.

[Sleeprider]

I know hindsight is an easy thing but reviewing my at home study half of the events were flagged as CA & Hypopnea the rest was obstructive... so whilst my AHI was halved with standard Cpap treatment I was far from treated.

And yet you were issued a CPAP with no efficacy data.  No one would have ever known there was a problem, or why therapy was not working had you not purchased a machine with data on your own dime.  

Sure, the doctors and technician looking at your result should have flagged it for follow-up, but as we all know apnea is just apnea and we just treat that with CPAP.  No wonder nearly half of all people treated with CPAP quit.

[booksfan]

So that's why I wanted to ask this. To see if this is common -- you are just given a machine and you can't shop around -- or is this a unique experience?   So far it seems not to be unique.

The first DME that contacted me told me EVERYONE gets the same machine (not the one I initially wanted). When I protested, she reiterated everyone gets the same machine, NO choice, period! I went elsewhere. Second DME is wonderful, so patient and accommodating. It's worth the 45 minute drive!

[mesenteria]

So that's why I wanted to ask this. To see if this is common -- you are just given a machine and you can't shop around -- or is this a unique experience?   So far it seems not to be unique.

The first DME that contacted me told me EVERYONE gets the same machine (not the one I initially wanted). When I protested, she reiterated everyone gets the same machine, NO choice, period! I went elsewhere. Second DME is wonderful, so patient and accommodating. It's worth the 45 minute drive!

To me, this is a case of, "It's the only brand who'd give us a deal that we're happy with and that we can sell with sufficient markup to people like....well.....you."

[astraith]

So then it cane very from DME to DME? Are you able to choose your DME? Because both times a DME was chosen for me.

[booksfan]

The way my insurance works, CPAP approval has to go through channels and generally "assigned" to a large, national DME close by. That was who initially contacted me (after a month of waiting!) and told me I could not have the machine my doctor and I had decided on. I immediately got in touch with my doctor and told him they would not give me what I wanted and didn't feel like I could work with them. He told me NOT to pick up the machine. His office found another DME who WOULD get the machine I wanted. It turned out to be a small, local company which was a 45 minute drive from my house. They were great to work with, from the initial contact, through the multiple mask changes (10-12, and yes, I had to make the drive each time!). And, get this, I didn't end up with the machine I thought I wanted! Just goes to show, what looks good on paper isn't always what it seems in person!

All this to say, kind of got to choose DME? Turned down the first one anyway.

[astraith]

That's kind of what i was wondering. If the doctor or insurance works with a specific company. I feel like I got bamboozled and now that I go back and think about it, I should have been asking more questions.

But honestly it sounds like this is an industry that needs to be changed. DME's should be fully trained and familiar with at least the products they sale. And Insurance provider's should make more requirements to help protect newly diagnosed patients. Like requiring a machine that can grow with the patient as the doctor is helping and studying the data from the machines. That way DME's will at least have to choose a better machine.

But it will take someone with a lot of money and know how to make a change.