I have a couple questions for you guys that track data

Yes, it may be true that 90% of patients DMEs set up are over 65 - the age of "do whatever the doctor says." (My apologies to those of you who are over 65 and are not following the rest of the sheep.)

Does that mean that only younger people with computers care to learn about their treatment? Maybe. I doubt it. I think you are only getting a snapshot regarding the type of patient who uses your DME. Anyone who has dealt with an older relative who will not question their doctor and refuses to learn anything about their condition(s) - including the proper name of it - knows whereof I speak.

BTW, I'm 47 and have both cell phones and a land line. I have the land line for my computer because I live out in the boondocks and am too much of a tightwad to pay over a hundred bucks a month for satellite internet access which is the only other option available to me.

Stick around and learn, Mike.

Lisa

Thanks for the info, Mike. Not being a Medicare patient, I suppose that even those rules come down to being payor-specific. But to further elaborate on jnk's points, isn't it interesting that there is a clear, solid numerical measurement used for hours of use and for diagnosis and for xPAP eligibility yet no real qualitative measure for improvement - only an opinion that things aren't as bad as they were.

All this aside - Mike congratulations on surviving your first half day on this forum. It has been fun! Hang in there! I am beginning to suspect that you may be one of the few good ones.

-Clark

Heres my story.
Went to doctor to get sleep study referal.
Did sleep study.
Picked up equipment.
Havent seen the doc since. Was told he wouldnt want to see me for 6 months to a year. And I have no intention of going again at this point.
DME is clueless, their answer to anything is "use the ramp button" - how will that solve leaks.

No one has a better interest in my care than me, thats why I track it. For the first 3 months I downloaded everyday, now I only download every sunday.

Sounds like your one of the good ones, care to move to oklahoma ???

I was curious from a stand point of a provider that has never had a pt even mention the thought of learning and understanding what it all means and I was simply intrigued.

I was curious about this statement.

Have you, as a provider ever mentioned to a patient that there was a possibility that they could "learn and understand more about what it all means"?

When I started my therapy 7+ years ago and at no time since then, have I ever had a Provider or a Sleep Doctor inform me that there was a way I could learn and understand about my therapy and ask if I would be interested in doing that.

Have you, as a Provider, ever suggested to a patient yourself, that such was possible?

I never knew any of it was possible until I found this forum! No Provider or Sleep Doctor (I admit there was little contact between myself and the Provider or the Doctor after the machine was paid for) ever mentioned that such a thing was possible or ask if I was interested!

New patients don't know to ask this. They are entering a whole new world. Providers and Doctors should know and should suggest this.

Some patients may not want to but this forum is evidence that a lot of patients would!

BleepingBeauty wrote: .........As you can see, the majority of us are not happy with the care we're getting from our doctors and DMEs. .........

BB,

Let me take a poke at that. I am happy with the care I am getting from my DME and doctor - which is no care. You guys taught me how to take care of my own therapy and like Velbor hinted, any help from a DME or doctor will be incidental and marginal.

I do have a fear that someone will make some policy changes that will interfere with my ability to manage my own therapy with my own money. We can't let that happen.

Now BB, back again to your quote, I am very unhappy with the care my friends are getting from doctors and DMEs. You know what that is like and I won't bother to repeat it here.

We need that system modeled after diabetes, where the patient goes to education sessions and has the tools to manage his therapy. Yes, many will fail at this just as many fail at managing diabetes. But it needs to be available for all new patients.

Regards,

So here's what I am wanting to know. It seems to me that no one in the process of treatment of OSA can do right by most of you.

The ins wants proof your using a machine that they are fronting most the payments for.....
The DME Provider wants paid on a service they are offering.....(assume just this once that they are a great company to work with)
The Dr trying to get you started on treatment that he knows will benefit you.....(even if you do take matters into your own hands)

you say all they care about is the money..... Well they are business's they do what they do to make money. Thats like talking crap on a fast food place for not giving you food for free. Well guess how long they would last if they handed out free food, Not long all you can do as a consumer is hope that business pays someone who is willing to help you out as much as you need. Which in my book comes down to the type of person they hire to represent them. disappointing truth here is that it sounds like 80% of you have had lazy people that only go to work to collect a check which means there concern starts and stops at there wallet.

This has been an action packed day guys! Pretty good topic discussion for my first thread. Eh?

I agree with Rooster and a previous poster; an OSA diagnosis should be followed up by training such as diabetics go through (or SHOULD go through). The OSA patient needs a clear understanding of OSA and the health benefits of xPAP therapy.

They should be taught:
1) what could happen long-term with their health if they don't use xPAP.
2) the machines and their differences.
3) how to properly fit and adjust a mask.
4) how to read their PSG.
5) why low O2 sats are bad.
6) what all those abbreviations mean (AI, HI, AHI, etc.).
7) how to problem solve.
how to download and read their sleep data from their machine.
9) tips, tricks, xPAP accessories, and website forums for xPAP users!

How about it, Mike? Want to be on the cutting edge and start a program for your OSA patients? If it is DME run, it would give you as a supplier a chance to build a relationship with your potential patients - face time, if you will. Frankly, I think sleep centers ought to run these types of programs, too.

Lisa

Hawthorne wrote:

I was curious from a stand point of a provider that has never had a pt even mention the thought of learning and understanding what it all means and I was simply intrigued.

I was curious about this statement.

Have you, as a provider ever mentioned to a patient that there was a possibility that they could "learn and understand more about what it all means"?

When I started my therapy 7+ years ago and at no time since then, have I ever had a Provider or a Sleep Doctor inform me that there was a way I could learn and understand about my therapy and ask if I would be interested in doing that.

Have you, as a Provider, ever suggested to a patient yourself, that such was possible?

I never knew any of it was possible until I found this forum! No Provider or Sleep Doctor (I admit there was little contact between myself and the Provider or the Doctor after the machine was paid for) ever mentioned that such a thing was possible or ask if I was interested!

New patients don't know to ask this. They are entering a whole new world. Providers and Doctors should know and should suggest this.

Some patients may not want to but this forum is evidence that a lot of patients would!

100% honest no... Again they've never asked if I had a pt intrested in knowing i would do what I could. Now before you cast me to hell you have to realize that most pt's find it to be an inconvenience to them and trust the Dr know's best especially when it requires them to not have to worry about it. I Will say one thing I spoke with 2 patients today that were wanting more general knowledge of products I almost always refer that type of question to CPAP.com and will sit on the phone with them while they check out different products so I can answer any question's I also refer them to cpap.com cause I like the review's and feed back for all the products from actual patients instead of my patient hearing from the guy selling the stuff. lol but I also told those 2 pt's about this site and the incredible amounts they can learn from reading around here and let them know I was a member so if they saw something and didn't understand I am only a phone call away!

Mike@TibroMedical wrote:So here's what I am wanting to know. It seems to me that no one in the process of treatment of OSA can do right by most of you.

The ins wants proof your using a machine that they are fronting most the payments for.....
The DME Provider wants paid on a service they are offering.....(assume just this once that they are a great company to work with)
The Dr trying to get you started on treatment that he knows will benefit you.....(even if you do take matters into your own hands)

you say all they care about is the money..... Well they are business's they do what they do to make money. Thats like talking crap on a fast food place for not giving you food for free. Well guess how long they would last if they handed out free food, Not long all you can do as a consumer is hope that business pays someone who is willing to help you out as much as you need. Which in my book comes down to the type of person they hire to represent them. disappointing truth here is that it sounds like 80% of you have had lazy people that only go to work to collect a check which means there concern starts and stops at there wallet.

This has been an action packed day guys! Pretty good topic discussion for my first thread. Eh?

Personally, I don't mind people making money as long as they do something to earn it. I would "talk crap" about any food place that took my money but didn't give me any food. And that's what too many DMEs do--they take the money supposedly for the purpose of educating patients and assisting with their therapy, claiming that's why they charge so much for the machines, and then do not do any educating or helping. They just get in the way of good therapy. They don't provide AHI-data machines. They don't even tell the customers they can turn masks in within 30 days to get one that works. The list goes on.

So for me, giving that kind of a DME money to give them the privilege of getting in the way of my therapy would be like paying a fast food place to come steal the food out of my home. Not a good deal for me.

LoneStar wrote:I agree with Rooster and a previous poster; an OSA diagnosis should be followed up by training such as diabetics go through (or SHOULD go through). The OSA patient needs a clear understanding of OSA and the health benefits of xPAP therapy.

They should be taught:
1) what could happen long-term with their health if they don't use xPAP.
2) the machines and their differences.
3) how to properly fit and adjust a mask.
4) how to read their PSG.
5) why low O2 sats are bad.
6) what all those abbreviations mean (AI, HI, AHI, etc.).
7) how to problem solve.
how to download and read their sleep data from their machine.
9) tips, tricks, xPAP accessories, and website forums for xPAP users!

How about it, Mike? Want to be on the cutting edge and start a program for your OSA patients? If it is DME run, it would give you as a supplier a chance to build a relationship with your potential patients - face time, if you will. Frankly, I think sleep centers ought to run these types of programs, too.

Lisa

That's an awesome point and would be great Idea, more often then not i forget that I do this as a living so all that you listed is basic knowledge to me. but it was learned from my job and not from the people that should be making sure any one doing a sleep study needs to leave just as educated as me. Very Very good point it slips my mind that I only know it cause I work it!

Mike@TibroMedical wrote: Well they are business's they do what they do to make money.

Precisely why healthcare needs to be socialized.

Mike@TibroMedical wrote:I've noticed that there are ALLOT of you guys that have there own card readers and the encorepro or resscan programs, my question is, do you guys keep track of this stuff for any certain reason? like personally? I have thousands and thousands of pt's with company's i work for and not one of them has there own reader's. cause we do all that for them when the Dr or ins need it for compliance....

Mike,

You bet! I've learned that medicos in general take one look at the fact that I'm fat, and everything wrong with me is blamed on fat. We'll skip over the fact that I wasn't fat before taking the Pill screwed up my system -- I'm fat because, according to them, I won't stop stuffing my face. Then when I bring in logs showing that I eat around 1500 calories a day AND exercise, I'm told I'm lying. Because if that was what I really ate, I wouldn't be fat.

Stuffing my face was the cause of constant diarrhea. (Wrong. I found a diet which dates to 1951, the original celiac diet, which solves that.)

Stuffing my face was the cause of my hip and knee pain. (Wrong. Turns out the cause of the pain is my complex sleep apnea.)

Stuffing my face was the cause of the post-menopausal gut cramps, and if I would just lose weight, it would all clear up. (Wrong. It was endometrial cancer. It was the very good oncologist I found who first suggested the possibility of sleep apnea.)

It was the pain management doctor I was sent to when the pain from my 24" cancer surgery incision wasn't clearing up who sent me for a sleep study. I thought the pain was causing interrupted sleep. She said, no, disordered sleep can cause chronic pain.

That's proved to be the case.

BUT: I received no education in what to expect of a sleep study beyond what I found in this Forum.

My doctor wrote an open-ended prescription for a CPAP or a Bipap because she's not a respiratory specialist. The really excellent RT at the local Apria looked at my sleep studies and realized I have complex sleep apnea, and so had my doctor write a prescription for the Respironics Bipap Auto SV for me.

Unfortunately, the recommended setting was not correct for me, and was causing central apneas. You can take a look at my thread, "Then and Now: 3 Charts"

viewtopic.php?f=1&t=40856&p=358318#p358318

which shows how an informed patient can read the data, discuss issues with respiratory therapist and doctor, and gain a change in their prescribed pressures which provides truly effective therapy.

So far as dealing with a DME and insurance is concerned, try this thread:

viewtopic.php?f=1&t=40925&st=0&sk=t&sd=a

I will also note that, far from calling me every three months as your company does, I have had to call them to report on my compliance. Coming up on 6 months next week.

This Forum has been an absolute Godsend.

Without it, I would not have known to call the mask specialist at the sleep center to try on masks before my titration so that I had one that would work for me.

Without this Forum, I would not have known it was possible to get software and card reader to check my own data -- because Apria sure as Hades did not tell me about it!

Without the ability to check my data, I would not have known I had a problem with a leak rate significantly higher than my machine could compensate for. Knowing this led me to realize that, contrary to what I thought, I did mouth breathe -- and let me take steps, like designing my own gadget for handling the leaks, to get the rate down to where my therapy could be effective.

Without the ability to check my data, I would not have thought to note the times when I woke, struggling to breathe out against my machine, and then check to see if I was having apneas at those times. I was, and this led me to the conclusion that the EPAP on my machine was too high. I consulted with the RT and the doctor, and my EPAP was lowered, with the result that I now have few to no apneas. In fact, the appearance of an apnea on my charts is so rare that I start looking for what factors could have caused it when one appears.

My therapy is successful and effective. Because of successful and effective therapy, my hips and knees no longer wake me with severe pain two and three times a night.

And that is why I feel every patient should have the ability to check their own data -- not just the bloody, bed@mned hours of use compliance data, but the real meat of the information, the daily details.

If I didn't have that, if I didn't have the peer support of this Forum, I'd probably be crying every night because I have to wear a god-awful mask which I have to struggle against to breathe. Instead, I'll fight tooth and nail against anyone who tries to take it away from me. And I'll do my best to help other newcomers, who are where I was five months ago, to achieve the same level of success and effective therapy. Not compliance. Compliance is irrelevant. I know I use it every night. But because I can read my own data, I also know that it is effective almost every night.

BTW, welcome aboard.

http://www.aasmnet.org/ClinicalGuidelines.aspx
AASM guidelines:

. . . 4.4.7.1 PAP usage should be objectively monitored to help assure
utilization (Standard).

This recommendation is based on consensus agreement by
the PAP Titration Task Force . . .

4.4.7.2 Troubleshooting of problems encountered while on PAP,
management of side effects, and methods to increase adherence
should be a part of the close follow-up of the patient on PAP
(Standard).

This recommendation is based on consensus agreement by
the PAP Titration Task Force, and is a modification of Standard-
Level Recommendation 4.4.1 (“Close follow-up for PAP usage
and problems in patients with OSA by appropriately trained
health care providers is indicated to establish effective utilization
patterns and remediate problems, if needed. This is especially
important during the first few weeks of PAP use.”) in the
2006 practice parameters for the use of PAP devices. CPAP use
is improved by contact with health care providers (either clinic
physician appointment or specialist nurse home visit). However,
newer approaches may represent alternatives to current
practices; the use of telemedicine support (i.e., Internet-based
informational support and feedback for problems experienced
with CPAP use) resulted in equivalent use, functional status, and
patient satisfaction at 30 days compared to traditional followup
care. Skipping the use of CPAP for 2 or more nights within
the first week of treatment signals potential nonadherence and
highlights the need for close follow-up during this particularly
vulnerable period of usage. This is especially important since
it is estimated that worldwide 5%-50% of OSA patients recommended
for CPAP either reject or discontinue its use within the
first week. . . .

I wonder if the AASM was talking about us here at cpaptalk.com?

Mike@TibroMedical wrote:So here's what I am wanting to know. It seems to me that no one in the process of treatment of OSA can do right by most of you.

It's not that no one in the process can do right; it's that they don't.

The ins wants proof your using a machine that they are fronting most the payments for.....

No problem. That's a compliance report, which any of us who use a machine every night can easily provide.

The DME Provider wants paid on a service they are offering.....(assume just this once that they are a great company to work with)

Again, no problem, provided they ARE providing a service. (Providing supplies is NOT providing a service.)

The Dr trying to get you started on treatment that he knows will benefit you.....(even if you do take matters into your own hands)

Okay. But let's remember that the doctors many of us have dealt with don't care about the patient's improvement on therapy, once the scrip has been written.

you say all they care about is the money..... Well they are business's they do what they do to make money.

Nobody disputes that they're in business to make a living, and I don't think anyone begrudges them that fact. What I think we object to is that their bottom line seems to supercede their patients' smooth adjustment to this therapy and overall well-being. If I felt like I was getting the kind of service my insurance pays for, I'd have no complaint. The only follow-up call I've EVER received from my DME was after my first night on the machine; the RT called to see if everything went okay. That was almost 18 months ago. I saw my doctor several times - at my request - because I never felt rested. He ordered two additional sleep studies, four months apart (at his own facility, of course), which my insurance paid big bucks for. He changed my pressure a cm or two each time, and I was out the door, on my own again, still being kept in the dark as to whether the change made is helping me. It's more lucrative for him to order sleep studies than for me to have a machine with data capability so I can monitor my own treatment. If that's not an example of the $$$ taking precedent over the patient's well-being, I don't know what is.

Thats like talking crap on a fast food place for not giving you food for free. Well guess how long they would last if they handed out free food, Not long all you can do as a consumer is hope that business pays someone who is willing to help you out as much as you need. Which in my book comes down to the type of person they hire to represent them. disappointing truth here is that it sounds like 80% of you have had lazy people that only go to work to collect a check which means there concern starts and stops at there wallet.

Now you're getting it. I'm not looking for "free." I want quality service - from my doctor and my DME - so that my therapy is as effective as possible. My insurance has paid out good money for my "care," but they sure aren't getting much bang for that buck (and neither am I).

This has been an action packed day guys! Pretty good topic discussion for my first thread. Eh?

I'm glad you've survived your first appearance here, Mike. There's lots to learn in this forum, so stick around.

hmm......[quote][/The ins wants proof your using a machine that they are fronting most the payments for.....
quote]l last i knew I was fronting the money for the insurance company to pay out on my behalf --- it's called premiums
my insurance sucks now because bc/bs wound have cost my employer 45% more than it did a year ago.
we now have a new company and my contributions went up 80%. they don't pay for crap and half of what used to be covered no longer is. and my deductible went up too.it is so high with the premiums and the deductible i would almost be better off not having it.

next - my dme charges my ins 3000.00 for a plus machine with no card,a hose, a mask and 6 filters. i can get the same thing for about 400.00at cpap.com BUT... they are out of network so they don't pay. BLATENT racketeering and price fixing by any standards. and our govt is the worst offender- medicare

then i go back to the sleep dr(who has an interest in the sleep lab ha ha) telling him i feel lousy and providing enough ammuniton to get an auto with data capabilities,, and his reply is"lets not be spending someone else's money .we'll bump your pressure up 2 cm's and schedule a sleep study" KA-FREAKING CHING


YES IT'S ALL ABOUT THE MONEY BUT IT'S OUR MONEY NOT THE INSURANCE COMPANIES LIKE THE MEDICAL ESTABLISHMENT HAS COME TO BE ACUSTOMMED TO!!!! WHO PAYS THE MEDICARE-- US TAXPAYERS


I GOT LUCKY HAVING A FAIRLY DECENT RT AT THE DME he switched out the plus for an auto - i got my reader and some software and guess what.......i had leaks i had no idea i had. when i leaked bad enough i had apneas right there in the chart! imagine that .

not only have i saved money but i feel better and if it goes astray I can take action. a lot cheaper than a (laughable) sleep study in strange environment for 6 hours at best. as one here put it i get a sleep study every night.