DME's misinformation

[tjk55]

Hi

I'm fairly new here and new to xpap therapy.

I was wondering what kind of recourse is available when a DME employee blatantly misinforms you about your machine and treatment? The machine was not even set up like the prescription read. Prescription said, Auto titrating CPAP set @ 4-20 cm, With a-flex or easy breathe, downloadable AHI data, heated humidification and all supplies.

Went to DME picked up a machine that was prescribed by my sleep Doc and asked if the EPR was on? Her response was, that it comes set from the factory at 2.

Long story short, I felt like I just couldn't trust her so when I got the machine home I started going through the menu's and discovered that I had no EPR settings. Then I got irritated, I called cpap.com and got someone very knowledgeable about the machine. He was able to straighten everything out in a matter of minutes. Also in going through the menu's with him I discovered that the unit had not been set up for a humidifier. At this point I was furious.
How is someone brand new to this therapy supposed to get comfortable with this stuff when you are treated like a mushroom?

[mdbarthe]

The first thing is persistence. Don't let them win. You call the DME and speak with the person who was supposed to have set your machine up correctly. Ask them about their misinformation and failure to follow the Rx. If that doesn't work, you talk to the person above them. If there still is no satisfaction, change DMEs (if your insurance company will work with another DME.)

You will find many instances on this forum of members who have had bad experiences with DMEs and the RTs that work there. I for one, have been fortunate to have a great RT at my DME who is always eager to please, helpful, knowledgeable, and very willing to allow me trials of equipment and work with me on costs. I know from reading here that I have been blessed in that respect.

[Slinky]

Welcome to the world of dealing w/local DME suppliers.

Better yet, WELCOME to this forum! From the sounds of this local DME supplier you are dealing with you will REALLY get a better education and advice about your xPAP and xPAP therapy here than you will from them. (So what else is new?) It does sound like you were able to get one heck of a good "first xPAP". Congratulations on that. It sounds like you have a pretty good sleep doctor to write such a good script too. Another congratulations for that too.

[GuyK]

How is someone brand new to this therapy supposed to get comfortable with this stuff when you are treated like a mushroom?

Unfortunately, it's a common refrain, which you'll see if you hang out here long enough.

Welcome to the forum.

Guy

[carbonman]

I was wondering what kind of recourse is available when a DME employee blatantly misinforms you about your machine and treatment?

How is someone brand new to this therapy supposed to get comfortable with this stuff when you are treated like a mushroom?

Come to this forum.
Read, read, read.
Become educated.

YOU, become your own best therapist........forget about the DME.

[bap40]

I have been on this therapy just over a year. My first DME/RT lied to me the very first minute I met her. I knew this because I had thankfully found this forum before my sleep study had been done. She was known on this forum as "The Bad Lady". After dealing with her for awhile and not getting what I wanted, she stole a nasal cushion out of a box with a new opus mask. That was the final straw. From her, I did not get the machine that I wanted and did not get any help or advise from her, only lies. Within that first month I fired her you know what. I took my machine back and demanded the nasal cushions she took out of my mask. I went to another place and recieved wonderful treatment, the machine I wanted and have not looked back. If you get no satisfaction please find another place to do your business with and keep on reading here.

Good luck!
Brooke

[Bearcat42]

Some DME's sound as if they are evil. I cant believe, or maybe cant understand why people are so unfriendly and unprofessional toward patients. If they dont like their job that much then maybe they should find another job in a different industry. On the other hand you do have those who seem to really care about what they are doing. I can only hope that in the near future, when I start having to deal with the DME that I get a good one. What kind of rights do I have when dealing with a DME?

[LinkC]

I think I'd be even MORE concerned about a physician who prescribes auto @ 4-20!!!
That's the entire range of most machines. Did he read your sleep study?

So, if you need, say, 18, it MIGHT get up that high by the time your alarm goes off in the morning... (OK, that's a slight exaggeration, but look at all the therapy time wasted as it ramps up from 4 EVERY night!)

[alnhwrd]

There seem to be two options when dealing with bad DMEs. Option one is to sever the relationship as soon as you can (you may be obligated by a sales or rental agreement that you have already signed) and find an alternate source of supplies. Option two is to keep going up the food chain with your complaints about the company until you reach someone who cares that their customers are not happy and something actually changes. I picked option one. Dealing with OSA was enough of a challenge for me.

[Bassasasin]

I would expect the brains of the auto machine to know according to what it is reading from the back pressure flow of the machine.
The sensitivity should be far greater than an observer as to what is happening with your breathing during your sleep. As I understand it the machine will also ramp down if the airway clears like you rolled from your back to your side.. an Auto machine perhaps should work from 4 <-> 20... the need to go beyond a setting for a patient that only needs 13 to clear an issue IS the issue, isn't it? It's like a shoe size. Hopefully auto is all you need.

No one wants to work with a bad DME. Luckily I hit it off with mine very well. very cute and smart ..

[elader]

I would expect the brains of the auto machine to know according to what it is reading from the back pressure flow of the machine.
The sensitivity should be far greater than an observer as to what is happening with your breathing during your sleep. As I understand it the machine will also ramp down if the airway clears like you rolled from your back to your side.. an Auto machine perhaps should work from 4 <-> 20... the need to go beyond a setting for a patient that only needs 13 to clear an issue IS the issue, isn't it? It's like a shoe size. Hopefully auto is all you need.

No one wants to work with a bad DME. Luckily I hit it off with mine very well. very cute and smart ..

You overestimate the brains of the machine. Why ramp from 4- if you were titrated at 14?? Just to enjoy those first two hours of apnea?? Why have the machine plateau with 20 at the top for a newbie who's got leaks and wakes up with a freaking hurricane in their face?

[tjk55]

I think I'd be even MORE concerned about a physician who prescribes auto @ 4-20!!!
That's the entire range of most machines. Did he read your sleep study?

So, if you need, say, 18, it MIGHT get up that high by the time your alarm goes off in the morning... (OK, that's a slight exaggeration, but look at all the therapy time wasted as it ramps up from 4 EVERY night!)

That is my fault.
When I went for my sleep study, I was in denial. I had a miserable night, slept barely 2 hours only stage 1. Arousals due to respiratory events were 62 per hour. SpO2 83% at lowest.
I went for a follow up visit a week or so later and the Doc said, we really need to do another sleep study to titrate you. Long story short, I thought this was the lesser of two evils, I really did not want to do another sleep study I didn't think I could stand another nite laying there awake.
She said we could pursue it another way so, here I am.
The first nite on therapy with the pressure set at 4 I felt like I was suffocating, so in the AM I called and had her change the min. pressure to 6 that helped.
6 still seem too low.
My results for last nite were the best so far. I had some issues with leaks the first couple of nites.

Results last nite Usage 6:55
Pressure 11.2
Leak rate 0.00
AHI 8.2
AI .5
HI 7.7

Hopefully I'm on the right track.

tjk55

[raylo]

My DME is generally okay, but they set the EPR level on my S8 Elite II to off, when it is written into the prescription.

I don't know if they are giving me bad info (but suspect they are) when they say that no matter what mask I use to keep the mask setting on the Ultra setting (I have a Mirage Micro and an Activa LT).

They also have told me that if I get the card reader and software that it will erase all the data so they can't see it (any validity to that?)

[Pineapple]

tjk55,

How many nights have you been using your APAP? From this one night sample, your AI and Leak look good. Have you been writing down your other nights results? If not, your doctor should be able to pull the information from your card. If your pressure is consistently up in the 11 range, 6 starting would spend a long time getting you up to the right pressure. You might want to ask your doctor about raising the lower limit (it might help those HIs) General rule is make and change and let it sit for at least a week to get an idea of how it is really working. One nights data can be skewed by other things in your environment and not really show how you are reacting to the setting.

BTW - The DME is not quite right about the card reader erasing the data, you need to tell it not to erase the data when you do the download.

[RiverDave]

raylo,

The info you got was bad. The unit you have relies on the mask setting to determine the leak rate. No validity to the card erasing the data - you have to tell the software to erase the data.