My mother is bamboozled by her "very nice" DME.

She is pretty active. She's 78 and still goes to the gym 3 times per week along with swimming, walking the dog, and playing duplicate bridge. Unfortunately she just doesn't believe that her sleep apnea is a that serious and she is not the least bit interested in making any effort to monitor her data. She does monitor her blood pressure fairly regularly so it isn't that she won't do it if she feels it is important. I have a feeling she just doesn't want to have one more thing to keep up with. She does use the CPAP every night so that is a great start.

She is certainly competent to be in control of her own life and make her own decisions. However, none of us can make good decisions based on bad or missing information. My goal in this is to try to make sure that she has the information she needs to make decisions. Then it is up to her.

I am going to see her later this week and she said she would bring the reports from the DME with her. (scanning them in and emaling them to me is beyond her skill set) I hope she remembered. I'm curious to see what they show since the reports that I generated do not show that her treatment is "perfect".

Since your mom is concerned about her blood pressure, maybe you can find a good article about how OSA affects it. That may pique her interest.

good idea. I'll try that. thanks.

I am so sorry that some many folks have been neglected or uninformed by their providers. When I was origninally diagnosed in 1990 they gave me a machine at the sleep lab and sent me home to figure out for myself how to make it work. Needless to say I was really unsuccessful. I hated every night and spent most of the 13 years I used the thing with the mask on the floor as I pulled it off in my sleep all the time. The hardest part was that I had no support.
In the last six weeks I picked out a mask and wore it while watching TV and playing on my laptop so I could get used to it. Then I went and did another sleep study. The place where I got the mask this time specializes in sleep technology. The tech who helped me find my mask also helped me with my C-PAP and will provide the support I need while on therapy. She states her job is to make me successful and thus far she has. I called today and she answered all of my questions about AHI and how to locate that on my machine along with many other bits of information. She looked at my data on her computer sent by my modem. The advancements in this area of medicine and mechanics is amazing. I feel like not only do I have the cadillac of machines but the BMW of support.
I would not have done another sleep study without the amount of support I have gotten this time around.
Good luck.

Sooo, I saw my mother and she brought the report.

He gave her a black and white copy of a month long summary report. He somehow produced the event detection page but of course it had all zeros for AHI, leaks, OSA, CSA, etc. I'm not sure how it was even generated, but of course it had zeros since she uses the Remstar Plus which doesn't produce that data. These zeros were the basis for his telling her that she had perfect results. Having looked again at the reports that I generated for her which show many leaks and also the information from PR showing N/A for the event detection section for the model she has, she now understands and is not happy with what has been going on.

I was considering giving him the benefit of the doubt and assuming that maybe he doesn't know any better, but then she told me he used to work in a sleep lab.

She is going to schedule a meeting with her neurologist to discuss the situation. Then she is planning to meet with the DME. I would like to be a fly on the wall for that meeting now that she understands what is going on.

Wow, bailachel. Wow. Wow. WOW.

Sounds like that "very nice" DME employee may have done something very deceptive.

What I wish (and I'm sure you do, too) is that you could be more than a fly on the wall at your mother's meeting with the DME. Wish you could be openly present there.

I wish even more that your mother's neurologist will be outraged when your mother tells him what the DME employee has told her and shown her. Outraged enough to make a phone call himself to the DME to find out what's going on. I don't think the DME owner would be happy with an employee who is risking losing referrals from a doctor.

On another note, that's cool that your mother plays duplicate bridge. I play (or try to, anyway!! ) duplicate, too. Great game!

In my experiencce offering feedback let alone complaints to DME's is ineffective. You might file a complaint with the state agency that regulates DMEs or RT's.

You're right Rested Gal. I do wish I could be there. Unfortunately, she lives in Florida and I live in Maryland.

Kevin, I think it may come to that. What is even worse about the situation is that the "gentleman" from the DME is a supervisor! One has to wonder how many other people are being treated this way by that office.

Janknitz wrote:Here's my dream--"CPAP buddies". When someone is diagnosed with SA and needs to go on a machine, that person would be matched with a buddy would would walk them through the process of getting a machine, mask fitting, and surviving the first nights and weeks. Ideally, it would be a buddy in the same geographical location who knows the DME's, sleep labs, and docs well enough to be a good advocate for the newly diagnosed individual. I bet this would increase compliance more than any other thing that has been tried so far.

There will always be people who want to just blindly follow the professionals' orders, put their mask and machine on, and get on with their lives. This would permit them to do it effectively and to be successful rather than getting frustrated and throwing the machine in a closet.

I bet the DME's would HATE it, and the doctors/sleep labs would be a mixed bag. But I think that one on one contact would be very good for the patients. Meanwhile, at least we have forums like this.

I'm new to this site but I love this idea and try to use it on a daily basis. As an RT that works in the DME field of sleep, I am mortified to see that most people feel let down by their DME provider. It is always my goal (and the goal of everyone I work with I hope) to OVER educate the patient and answer all of his/her questions. I'm not a CPAP user but I worked as a sleep tech for two years before moving into this position and I let my patients educate me as I educate them. Any problems they face I WANT them to call me and discuss it before they become discouraged. Long story short...your DME rep (be it an RT or simply some kind of tech) should be your "CPAP buddy". We are a business but the best way to keep business is to make sure your patients are happy and healthy. My advice to anyone that is receiving subpar encouragement and information from their DME provider is start shopping for a new one. Hang in there guys and gals!!

Long story short...your DME rep (be it an RT or simply some kind of tech) should be your "CPAP buddy". We are a business but the best way to keep business is to make sure your patients are happy and healthy. My advice to anyone that is receiving subpar encouragement and information from their DME provider is start shopping for a new one. Hang in there guys and gals!!

That would be nice, but not always possible. I have an HMO, for instance, and my only choice is whether it's Crapria or out of my pocket. I choose out of my very shallow pocket whenever I can, just because they are such jerks I want to keep it out of THEIR pocket. And changing insurance (which has it's own sweet deal going with Crapria) is not a possibility either at this point--I'm not Medicare and have only one choice through my husband's employer, with pre-existing conditions (including OSA now ) which make it impossible for me to get other insurance.

Sometimes all you can do is be pushy and advocate for yourself, and woe to those not savy enough to know they are being walked all over.

Soooo... she made an appointment with her sleep doctor. Although he hadn't been planning to see her until next January, she was able to make an appointment.

She went to the appointment with the idea of asking for help. She left feeling disappointed and seriously considering changing sleep doctors. (I started another thread asking for recommendations in her area)

He was apparently satisfied with only the compliance data and did not care that he didn't have access to any more information. Despite the fact that she told him she didn't think her therapy was working as well as it should since she was once again tired all the time and napping every day, and she showed him the report I generated showing many, many leaks. When she discussed the situation with the DME providing her with a false report and congratulating her on her "perfect" zeros, he just said maybe the DME didn't understand, but didn't seem concerned about it that or the fact that the DME apparently didn't understand the capabilities of the various machines. He still doesn't want to see her again until January and did not make any suggestions to help her with her therapy.

The good news is that my mother insisted on being switched from the PR1 Plus to the Auto so he did, reluctantly, write a new prescription for her. They also called the DME and arranged for the "very nice gentleman" to bring it to her house. The parting words from the woman in the front office were " Well, I hope you and your daughter are satisfied now." As you can imagine, we are not.

Next up, waiting for the delivery of the PR1 Auto and the conversation with the DME.

bailachel wrote:Soooo... she made an appointment with her sleep doctor. Although he hadn't been planning to see her until next January, she was able to make an appointment.

She went to the appointment with the idea of asking for help. She left feeling disappointed and seriously considering changing sleep doctors. (I started another thread asking for recommendations in her area)

He was apparently satisfied with only the compliance data and did not care that he didn't have access to any more information. Despite the fact that she told him she didn't think her therapy was working as well as it should since she was once again tired all the time and napping every day, and she showed him the report I generated showing many, many leaks. When she discussed the situation with the DME providing her with a false report and congratulating her on her "perfect" zeros, he just said maybe the DME didn't understand, but didn't seem concerned about it that or the fact that the DME apparently didn't understand the capabilities of the various machines. He still doesn't want to see her again until January and did not make any suggestions to help her with her therapy.

The good news is that my mother insisted on being switched from the PR1 Plus to the Auto so he did, reluctantly, write a new prescription for her. They also called the DME and arranged for the "very nice gentleman" to bring it to her house. The parting words from the woman in the front office were " Well, I hope you and your daughter are satisfied now." As you can imagine, we are not.

Next up, waiting for the delivery of the PR1 Auto and the conversation with the DME.

Beware ... for they will (as always) attempt the bait and switch at the very last moment.

This is SO very interesting. I hope you'll update us after she meets with the "very nice gentleman"

I can sympathize with your mother. I've had my head in the sand (or up a certain part of my anatomy) for 2 years. Time to wake up and get educated.

Yes, I'll let you know what happens. crossing fingers that they really bring the right one.

wow, I feel for ya. I had not read this thread until now and im sorry you are getting the run around like this.

I really do have a good dme, and they will not bamboozle her. I do not know if they provide machines of that type (I got my F&P from them) but
in the event it will help I am going to send you their information in a private message.
If they take her insurance (medicare) they will not jerk her around like that. I have been to their office, and they truly do know what
they are talking about. On my initial visit to them (they are my second dme) they went over my sleep study line by line and explained everything.
They took time to show me everything and did not try to just screw me and the insurance company over.