Taking Control

[BigBoyBall]

I've decided to take control of the way the system treats my sleep apnea. After long discussions with my doctor and his office without any plausible results / answers in concerns to the treatment and forward approach to my diagnosis, I have come to the conclusion that this is necessary.

Apparently my complaint of sleepless nights, insomnia which also included obnoxious snoring has resulted in the diagnosis of mild to moderate sleep apnea and a CPAP machine was prescribed after two sleep studies.

My first visit after receiving the machine yielded disappointing results, your weight is so much, your blood pressure is so much continue using the CPAP therapy and return in 4 months.

The return visit was much the same with the exception that the office could not read the data card from my ResMed Elite S8 with the HumidAire 3i attachment, ok benefit of the doubt to the given to the doctor and his staff.
My third visit last week prompted me to start asking questions, before I even arrived for the visit I called the office to ask if this appointment was necessary and was told that my insurance carrier required the visits for the CPAP to be paid for. One call to the insurance company and I was told that was not true.

Call the office back and tell them what the insurance company has said. I was then told that the Medical Equipment Provider was the one that required the visits. One call to them and I was told that was not true. Called the doctors office back and told them what the Medical Equipment Provider had told me. I was then told it was necessary for the doctor to see me in order to keep a flowing chart of my progress.
Enough said, If I was told that from the beginning I would not have questioned that response, but now I'm armed with some information via this website and the internet.

I attended the scheduled visit. My weight was such and my blood pressure was such, ok into the exam room to await the doctor.
First his assistant arrives and goes through the basic questions, no one has taken my data card yet to read it.
Off goes the assistant and a short while later the doctor comes in. Well to make an already long story a bit shorter we go through the routine and I begin to ask questions regarding my care and where we intend to go with it.
What is the resolution to my problem, that being insomnia with loud snoring.

He looks through his notes for my data card information and pulls out a sheet, looks it over and begins to speak to me about the results.
Very interesting since my data card signed with my name on it is still and has been in my pocket since my arrival.
I asked the doctor if I could view the results and immediately pick up on the fact, it's clear as day, that the dates are from my first visit in April - It's now December.

He asks for and I give him my card, his eyes open wide when he sees my name printed on the card and they take it to read the data.
A few minutes later the data comes back. Ok he looks it over and he sees that I've used the machine pretty steadily from the last documented visit and beings to tell me to continue on with the prescribed therapy.
Wait a minute, this data only tells anyone who views it that I used the machine on such a night for so many minutes / hours. There must be more, there has to be more than that.
What about episodes? Where are we going with this - I already have an idea where I am going but gave the doctor the opprotunity to explain the progress of the situation.

We spoke for about an hour. I believe I spoke of key indicators towards my concerns. End result I was driving out to the Medical Equipment Provider to have them read my card because his office admitted that they were not familar with the new software, ResMed AutoScan 5.7 and ResScan 4.3.
Off to the Medical Equipment Provider to see the technician, a great person who's bent over backwards to assist me with this situation.
She reads the card no problem and shows me the data, what to look at and areas that should be discussed.
Off we go to find the software and a data card reader so that I can review the data and flag any potential probems with the machine or my sleep patterns.

Today I get a call from the Medical Equipment Provider asking if it was alright to release the information to the doctors office!
RED FLAG why is this happening?
I call the doctors office and get no true response other than the usual run around but this time I'm cutting them off at the pass with the facts to their responses.

My conclussion is this:
Anyone who is using a CPAP machine with a data card should really be able to view their data on a daily basis especially if they are experiencing problems.

I'm not saying that anyone does not need to visit a physician.

What I am saying is to be careful that the physician that you may be using is not just charging you and your insurance for unecessary office visits to pad their pockets.

I do not have the luxury of leaving work with pay to go to a doctors appointment and pay them for the visit, it's counter productive in this instance.

What I am saying is that those who choose to should be educated by their physicians in the use of this software and that the software should be made available to those who choose to do so.

Boy does it feel good to get that out. Hopefully some may agree and be able to work towards more positive results in their treatment and life longevity.

I would like to thank those who provide this forum and will be looking for the ResScan 4.3 or ResMed AutoScan Software beginning tomorrow.

Best of luck to all in the new year and much health and happines.

[RipVW]

Yep, sounds like your experiences mirror those of many of us. At least your doc scheduled a followup appointment--I've never had one (my sleep study was Jul7 2006). As you recognized, we just have take responsibility for our CPAP treatment--do our homework, research, learn and take things into our own hands. Hooray for you!

[Panhandler]

BigBoyBall:

Welcome to the forum. Sadly, your post is not new to us. What you're experiencing only echos hundreds, maybe thousands of other interactions between those of us with OSA and the medical community.

The good news is that you've had the insight to look behind the curtain and realize that the "wizard" doesn't really know as much as we expect him to. The community here has decided that it's up to us to take responsibility for our own care.

A quick read through the "Collective Wisdom" and CPAP FAQ at the top of this page will go a long way to get you up to speed and there are a lot of very experienced CPAP users here who will be happy to answer your questions as they arise.

There are some on the forum who are very negative about the physicians and medical equipment providers. I'm just indifferent to them. It's my problem, my responsibility. I'd be happy for some help from them, but if it's not forthcoming (and it isn't) I'm going to learn whatever I can from whomever I can.

Most of us aren't medical professionals (there are a few RTs here that I know of) so use your own judgment, but stick around. Life will get better!

Welcome aboard!

Wally

[rested gal]

I've decided to take control of the way the system treats my sleep apnea.

Smart decision, imho.

Excellent post. Very interesting account of an all too common run-around.

Another common example is... "Your insurance won't pay for THAT." (like for an autopap.) Phone call to insurance reveals the truth. That insurance doesn't care whether it's a plain CPAP or an auto-titrating CPAP. Insurance will pay the same amount to the DME whether the DME gives you a plain CPAP or an auto-titrating CPAP. That it's the DME who doesn't want to let you have an "auto-titrating CPAP", as there's less profit in that machine for the DME.

Boy does it feel good to get that out. Hopefully some may agree and be able to work towards more positive results in their treatment and life longevity.

Oh, I agree. Sure do! Have been doing for myself, for the past four years, exactly what you plan to do for yourself. Using software to monitor my own treatment. So have many, many others on this message board.

Best of luck to all in the new year and much health and happines.

Same to you, BBB.

[Wulfman]

Welcome to the realities of the sleep therapy "game". If it was done on TV or the radio, it could be called "The Price is Right" or "Dialing for Dollars" (or pick your own favorite game show name).
Glad to see you found your way here.

Best wishes.

Den

[rcaryl]

I went for a sleep study at the behest of my wife. She insisted that I needed it because she swore I stopped breathing for long periods, followed by a severe jerk and a gasp for breath.

So, on the day before Christmas eve in 2005, I go to the "sleep center." I fill out a questionaire, and I'm told to return later that evening for my study. This occurred on a Friday. Later, when I returned, I was connected to more wires than I'd even seen and told to go to sleep. About two hours into the study, the technician came into the room and began to connect me to a breathing machine. I say that because at that time, I didn't know the difference between a CPAP and a BiPAP. The next morning, the technician and a sales representative for a local medical equipment concern sat down with me. They went over the printout from the computer system which indicated that I stopped breathing many times per minute. They further indicated that I needed a BiPAP machine due to my size (I'm a big guy). This was Christmas Eve morning.

They told me to go to the medical supply place the following Monday to pick up my equipment and to be fitted for a mask.

Skip forward to Monday: At the medical supply place, they go over my computer printout from the sleep study, set the machine up with the inhale and exhale pressures and intervals, fit me for a mask and send me home.

Now, skip forward to September 2006: I get a bill, marked PAST DUE from some doctor of whom I've never heard. A call to his office manager reveals that the bill was for "reading my sleep study." I protested, saying that everything that transpired with regard to the study had been entirely in my presence and unless the doctor was the invisible man, he read nothing.

After she insisted that I was mistaken, I told her to forward his "reading" to me, and then I'd pay his bill. What I received was a copy of the original computer printout, along with the original questionaire I'd filled out the first day. Ergo, the doctor basically just gave his imprimatur after the fact to whatever the technician diagnosed and then expected to collect a nice fat fee. As it turns out, the reason for the bill was that the doctor's office waited too long to file with my insurance and they denied the claim. Rightly so, if you ask me.

So, I refused to pay him for having done absolutely nothing. After a threatening letter, I called them and told them to either sue me or stop sending the letters. Since then, no letters and no lawsuit. Kinda hard to sue when all the evidence indicates that the plaintiff is attempting to defraud my insurance company.

Since all this has transpired, I've figured out how to get the machine into clinical mode and I've been adjusting it myself as needed.

Frankly, it is totally unbelievable what a racket this whole area of medicine actually is, vis-a-vis insurance payouts.

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, CPAP

[Guest]

Good for you rcaryl, and welcome to the forum.. you'll fit in here very well. BBB's story is all too common, and it simply points out that in order to make this thing work you need information. I found that out by first lurking and then starting to ask a few questions. Man, what a response. I've reported here before my experience with upgrading an M-Series Plus to an APAP, so I won't repeat the whole drawn out story. Bottom line is, with the help and advice from the friends I've made here, I lined all my ducks up, and my insurance ended up paying for an APAP unit with Aflex, even though I'm not eligible for a new machine for another 4 years.

I'm sure many of us read your account about standing up for what's right and said "you go guy".

Best wishes, and come back often.

[BigBoyBall]

First I would like to thank all who have shared their experiences and support in this thread. I really did not know that there were so many of us.

This morning the DME called my home and told me that the doctors office had once again called them in regards to my case.

The doctors office has requested the DME to inquire about a new CPAP machine, respironics, for me to use. The reason being the doctors office is stating that there is a problem reading the data from my current machine, ResMed Elite S8 with the HumidAire 3i.

Not so much of a problem and if they do not know how to read the data then it is a forward step. What the doctors office does not realize is that it doesn't matter what machine I use, I will become a bigger part of this action plan and will also aquire the software necessary to monitor the situation at home.

Now I've been requested to contact my insurance company and find out if I can switch machines because of the doctors office and their problem with reading the data.

Stay tuned folks, you might see me posting under "Fired by Doctor" thread next!

[RipVW]

I faced a similar situation with my first CPAP, a ResMed Compact. After the first few nights, and just a little research, I knew I had to have EPR; just couldn't stand exhaling against full pressure. So, my DME gave me that "it depends if your insurance will cover another machine" line. I told them that I didn't need a second machine, I needed to return the first one since it did not meet my needs. I did get my doc to provide a new prescription. Told my DME that I was returning the machine to them, that I would advise my insurance company that I had returned it, and that they could provide the new machine or else I'd acquire it elsewhere. Guess what, it worked! They provided the replacement machine and accepted the return. Sometimes, you just have to be an insistent consumer to get results from these DMEs.


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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, CPAP, DME, Prescription

[Slinky]

Either your sleep doctor has an antique version of Resmed's software or doesn't have the Resmed software period. 'Cause even "I" was able to install, understand and use the Resmed software. Duh.

I'm running AutoScan 5.7 and it was the easiest software I've ever installed: first try and it was working. I also have ResScan, not the newest version, but can't tell you the version because it EASILY installed (and ran first time) on my laptop ... and my granddaughter just messed my laptop up after installing and using her Christmas Pirates of the Carribian game. I've gotta get my 'puter guru over to straighten up my laptop and its time to have him clean up my desktop as well and get some of the kids' stuff off here.

ResScan is a newer version of the Resmed software than AutoScan 5.7 and there is a newer version of ResScan due out sometime around the first of the year. My sleep lab is using AutoScan 4 and they can read both my Resmed S8 Elite and Resmed S8 AutoSet Vantage's data.

If you do decide to let them switch you to a Respironics, do NOT settle for less than the Respironics M Series Auto w/A-Flex. Might as well get the top of the Respironics line as you now have the middle of the road Resmed S8 Elite.

Frankly, I don't use my Auto all that much, nor did I use my Respironics pre-M Series Auto w/C-Flex much when I had it before I sold it to my son in law and bought the Vantage in its place. I found that I do better w/the steadier pressure of a straight CPAP so ended up running the autos as straight CPAPs anyway. BUT we are all different, and certainly if we want to run our therapy w/o much or any input from a sleep doctor there are distinct advantages to an auto. I prefer to have one on hand, even if only as a backup and/or travel machine and to check my pressure needs on occasion to see if they have changed. I've had a good sleep doctor and a good sleep lab - but - I'm an impatient patient and not one to "enjoy" waiting for an appointment even if it is only a week away.