Ready to not do this already, problems with the DME

[MichelleFL]

I am so close to saying I am not going to do this. So close! I really do not feel that my apnea is bad and have actually felt better recently. These are not excuses but my honest feelings. I had neck surgery, my whole thyroid, taken out in December of 2007 and had major neck swelling... See photo..

http://i117.photobucket.com/albums/o80/ ... cision.jpg

Here is my neck now, BIG difference.

http://i117.photobucket.com/albums/o80/ ... ecknow.jpg

Only this past month has the pain in my neck gone away and a big portion of this swelling. I do not feel as though I am choking when I go to sleep and am quite rested these days... Not the falling asleep at the wheel while driving feeling I had a few months ago.

Anyhow back to the DME.. They lied to me! I called this morning and the prescription was not called over yet for an auto from my doctors office and yet they told me that my insurance would not cover it. That they could order it for me but since Blue Cross Blue Shield would only pay so much I would be left with an out of pocket payment to them for over 3 hundred dollars! Then I have to pay the 25% copay for my insurance?? I might as well go to craigslist and buy one myself if I could afford to do so! Anyhow I then call my doctor's office and tell her that this simple thing she told me not to worry about is now not so simple. She said that she trusts what these people say and if they are telling me that I cannot get an auto then that's it and she does not have time to talk with me right now. I told her that I had an appointment with Dr. Irvine on October 30th and she said to discuss it with him then. So then I call my insurance company to see if indeed they would pay for it or not. She said that there is an individual diagnoses code for anything they would order for me and they need that code to determine if they would pay for it. There is no list that I can pick from of what the top of the line thing they will cover. They are in cahoots with these people to try and get the lowest cost machine that can be had!

So anyhow when I see Dr. Irvine on October 30th I will tell him that I would like an auto because...

1. I feel that my sleep study was done when I was feeling better. I did not feel like a train wreck on both studies only a little tired.. Who knows what my levels are when I am at my worst? Who knows if there is a worst now that my neck swelling has gone down.

2. Weight Loss - My doctor is focused on me loosing weight so why should I have to go back time and time again for adjustments when simply an auto will take care of it?

3. My anxiety - I am not going to use a machine at a constant pressure of 6 because of my anxiety over masks and breathing.

So what do all of you think?

I know your not going to tell me not to do it of course. But I do not need this stress either.

Thanks so much everyone!

[congahands]

Your milage may vary, but my response would be...

(This is assuming that Dr. Irvine is a sleep doc.)

1) Call the DME back and verify that they have the new prescription. Assuming they do, tell them that you need a copy of the prescription. Then ask them about the insurance coverage. If they still say no, at least you now have the diagnoses code.

2) Call the insurance company with the diagnoses code and see what they say. If the insurance company says they will cover an auto, then have them contact the DME and straighten this mess out.

3) If the insurance company says they won't cover an auto, call Dr. Irvine's office, and leave a message for him to call you back. If he calls back then explain your concerns, and see if he will write a new prescription with the diagnoses code that you need. If he doesn't call back or he won't write the new prescription, contact his office and tell them that you want a copy of your entire file, or at least all your test results. It is reasonable for you to have to pay a small copying charge if they require it.

4) Take your records and your prescription, and go to a different sleep doc. Explain that you believe that you need an auto for the reasons you've already stated, and does he agree.

Doctors, DME's, and sleep labs are there for our benefit. If they are giving you lousy service fire them.

Pedastals are for vases, not doctors and their staff.

Just my $0.02.

[Georgio]

Michelle,

Sorry to hear you are having difficulty getting thru our health care bureaucracy. It's not a suprise after all the stories you hear here.

1) Get a written prescription for exactly the equipment you want in your hand.

2) Hand carry it to the DME and tell them that is what you want. If they won't provide it you will go elsewhere. They will either want your business and sacrifice part of their profit...or you can find another DME that will.

3) The insurance company really isin't a factor because they are only going to pay a fixed $XXX.00 amout to whoever provides your machine.

Has your throat healed and eliminated your OSA? Only a sleep study could say for sure. I will point out that my OSA "symptoms" came and went. At times I would feel pretty normal. Others I couldn't get off the couch...it felt like a relapse of mono. Not anymore.

Good luck,

Georgio

[Wulfman]

Michelle,

I think you're stressing out too much on getting an APAP/Auto. As was discussed in one of your other threads recently, at your prescribed pressure, an Auto would probably be "overkill". I'd suggest putting efforts into getting a data-capable machine that has readily available software that you can understand. It'll tell you everything you need to know.....like how your therapy is working.....and you can adjust your pressure if necessary.

Den

[jules]

I am confused

a lot of people can self adjust over time with a data capable machine and software - you are making too much of this mole hill -

a weight loss with yield a pressure of what? from the current whopping value of 6 it will drop to 5 or 4? - many of us can't even breathe on 6 - it's not like your pressure needs to drop from 20 to 12 with weight loss

maybe if there is enough weight loss, there will no need to keep using the machine but having an APAP isn't going to tell you that - only a sleep study will

your diagnosis got you a machine because you have increase AHI in REM - not that unusual - you didn't want to do titration - now that you did it you want to have this machine and won't settle for anything else?

you are confused

you need to decide what is the most important thing right now and go for it - if it is that particular machine you desire then you do it and find the funds to pay for it

it you want adequate treatment with a data capable machine you go for that such as a Pro m series or Elite - again one can self monitor and adjust with the software

some of us don't get what we want unless we are willing to pay OUT OF POCKET for it - in my case doing that was a lot less stress to just pay for it than dealing with all the insurance paperwork and more

as long as you want to use your insurance, they (including the DME and docs even) will determine what you need and your voice in the matter falls on deaf ears

[kteague]

Michelle,

Even with an auto, at a pressure of 6 you will not be able to go to enough lower to make it an issue in needing an auto. Even if you lose weight, you will not be able to go much lower because all masks need a specified pressure just to vent properly. In that respect, the auto will be an advantage to you only if your pressure need is indeed higher.

My last machine I went the route of straight cpap but data capable (M Series Pro). If you were to take the same route, the data will tell you if you need to adjust it upward. If your data shows 0 events you could drop it to 5, and if still 0, I probably wouldn't argue with you about not using it. If that time comes, your doctor could always order a 2 week trial on an auto to see if there was still a need.

With all your doubts, especially regarding the surgery's effect on your apnea, maybe before you make a decision have your doctor order you a 2 or 3 week trial on a loaner apap to discern your current needs. Then you could use that data to make further decisions. That's what I had to do early on when my cpap treatment wasn't working and they refused to provide an auto on a permanent basis. (I later ended up buying a used auto on here. Currently use straight cpap.)

There are enough things in life to stress over - pick your battles. I wouldn't compromise on data, but beyond that, this may be one of those battles not worth the stress of the fight.
If you look at it as a 'do nothing or get an auto' situation, you may be overlooking viable less stressful options in the middle of that spectrum. There is no shame in getting a cpap.

Kathy

[Goofproof]

Reading your post even I almost drown in DeNile, Lucky I had my Remstar data capable machine handy, like Wolfman said, the only way to go. That or another sleep test to confirm that you still need the machine, a data capable machine and the software or Keep treading in DeNile until you health gets so bad you can't fix it. Those are the options, it's up to you to make the choice. If I hadn't made the choice I did, to "Get Er Done", I wouldn't be here, I'd be in the ground by now. Jim

[OldLincoln]

I cannot tell you if you need treatment, or if you need an auto, but to answer some of your questions....

The insurance code for CPAP and Auto CPAP devices is the same and the DME's receive the same dollar amount for either device. Of course the AUTO costs them more so they do not want to sell you one. They may argue that you do not need an AUTO and if the doctor agrees then you can have a CPAP or nothing.

When I initially asked my doctor for an AUTO he said I did not need it and the DME would charge me a couple hundred more to get it. I took the CPAP and it was only after I got bloating so bad and did a lot of research on it months later that he agreed and wrote the prescription exactly like I asked him and we discussed it with the DME on the speaker phone and I got what I requested.

The thing is the DME must fill the Rx that the doctor writes. If he just writes a "CPAP" then you get what the DME wants you to have. If he writes a "Remstar M Series with A-Flex" then that's what you get. Some have reported a positive experience of telling the DME they want an AUTO and the DME gives it to them. Sounds like your DME doesn't agree with that.

[DreamDiver]

...I called this morning and the prescription was not called over yet for an auto from my doctors office and yet they told me that my insurance would not cover it. That they could order it for me but since Blue Cross Blue Shield would only pay so much I would be left with an out of pocket payment to them for over 3 hundred dollars! Then I have to pay the 25% copay for my insurance?? I might as well go to craigslist and buy one myself if I could afford to do so! ...

1. I feel that my sleep study was done when I was feeling better. I did not feel like a train wreck on both studies only a little tired.. Who knows what my levels are when I am at my worst? Who knows if there is a worst now that my neck swelling has gone down.

2. Weight Loss - My doctor is focused on me loosing weight so why should I have to go back time and time again for adjustments when simply an auto will take care of it?

3. My anxiety - I am not going to use a machine at a constant pressure of 6 because of my anxiety over masks and breathing.

Hi MichelleFL,

It's going to be okay.

First - it's not so much that they lied as they only told you part of the truth. A lot of DME's are apparently now resorting to the 'lowest common denominator' concept of therapy. Regardless of what you want, they're going to attempt to make you take what they can make [edit: the biggest] profit on. Cheapest mask. Cheapest machine - even if it's not a machine that you've been prescribed. If you go in there only armed with half the information, you're not going to get what you want. Make a spreadsheet of what it's going to cost if you buy it from cpaptalk.com and compare it with what you would pay for the same model from the local DME. Include your copays and out-of-pocket costs. Let them understand that before you buy anything from them you're going to comparison shop. You'll want an itemized list of what you'll pay for everything, from machine to mask - nothing less. If they won't help you, tell them thank you and that you'll take your business elsewhere. Go to more than one DME. Also consider that some BCBS policies will allow you to buy your equipment through cpap.com through billmyinsurance.com

Regardless of how you buy it - you're probably going to find out it will cost you less to buy exactly what you want from cpap.com after all the costs are analyzed. You don't have to buy anything until you've finished your comparison shopping.

[boston]

I really feel lucky now, when I picked up my machine, the DME told me they wrote the script for regular cpap, but he thought I needed auto, so he called my doctor and took care of it before I ever got there and I walked out with an auto.
But then my DME seems like a dumb@ss on other issues.........guess it cant be all good.

[MichelleFL]

The thing is the DME must fill the Rx that the doctor writes. If he just writes a "CPAP" then you get what the DME wants you to have. If he writes a "Remstar M Series with A-Flex" then that's what you get. Some have reported a positive experience of telling the DME they want an AUTO and the DME gives it to them. Sounds like your DME doesn't agree with that.

Thank you very much for your replies.. MY GP, Dr. Irvine is not my sleep doctor and is relying on information from the sleep center. I will speak with him on October 30th and see if he will agree to my idea of a auto and as you said OldLincoln I will ask him to be very specific as to what to write on it.

As for those of you saying I am making a mountain out of a molehill because my pressure is so low, I don't feel that way. As well as apnea get's better, it also can become worse with life situations. What if I cannot loose the weight? I asked my insurance and they will not pay for another sleep study at this time because I just had one. I don't know if your allowed one a year like glasses but I will check into it again next year. Also I suffer with anxiety and I don't want a pressure of 6 as I had a pressure of 4 for my titration and I just was fine with that. I also have a fear of masks from my hospital days when I was 10 years old that sets my anxiety even higher. I did not ask you to judge me, I asked for your help thank you very much.

[Cat]

I am a clinician in this area, and I would suggest talking with your sleep doctor and your primary doctor about your anxiety, there may be something they can prescribe to help. Also, I have had patients in the past with anxiety about mask choices, I would recommend trying a nasal mask (over the nose) or even a mask that has pillows that fit directly into the nostrils (looks like a scuba mask). You have a low enough pressure that this would be possible for you. I would not stress too much about negative remarks, every patient is different and handles stress factors in different ways. It takes sometimes a month for a patient to adjust to the lifestyle of cpap use. But the benefits from therapy are remarkable whether your pressures are 4 or 20. Keep trying to give it your best and if you feel as though your not receiving the "personal touch" from your providers, then change. Review your patient rights/responsibilities, you are in control of your therapy, you make the choices, not them. Decide what works best for you through trial and error, and if you still have issues, talk with the sleep doctor to get them resolved. There may be a different alternative, look for local support groups in your area, they can also help. Good luck and keep living life to its fullest, don't sweat the small stuff.
Cat

[MichelleFL]

Thank you Cat.. I wish I could speak with this sleep study doctor but I don't even know who he is. This whole thing was started by my GP who sent a fax over to the sleep study recommending that I have one performed. They called me in a few days and there onsite doctor is the one who went over my results and then sent his impression back to my GP who then signed off on it. In the videos for sleep studies I have seen where they call you back to go over your results.. Not this one! I have not even been asked if I would like to speak with there doctor. So I am left to deal with clinicians for my answers and as you see it's confusing me..

[Cat]

Michelle, I know because I am a nurse, you have every right to know what your sleep study revealed. Please contact the sleep center again and ask if someone will review the results with you. Ask what your AHI level was and how much it improved with the setting that was prescribed to you. Also, call your DME provider and ask them to explain it to you in simple terms. You could also ask for a copy of your sleep study for your own medical records. This way you could have it in hand when you see your GP doctor this month and ask if he or his nurse could go over the results with you. It is your right as a patient to know why your being treated and how they decided what pressure worked for you. I hope you can get the information you need so you can begin to understand how important therapy can be for you. Not everyone who is prescribed a cpap machine has to stay on it for life, things change such as weight. Keeping this in mind, always have close communication with your providers of any changes you notice. I don't know your medical history and I am not a doctor, but I do know that they have your best interest in mind, and so do I. If I can help encourage you in any way, please let me know. I want you to be a success.
Cat

[nomoore]

Thank you Cat.. I wish I could speak with this sleep study doctor but I don't even know who he is. This whole thing was started by my GP who sent a fax over to the sleep study recommending that I have one performed. They called me in a few days and there onsite doctor is the one who went over my results and then sent his impression back to my GP who then signed off on it. In the videos for sleep studies I have seen where they call you back to go over your results.. Not this one! I have not even been asked if I would like to speak with there doctor. So I am left to deal with clinicians for my answers and as you see it's confusing me..

This is exactly the way my sleep study was set up. All I ever knew of a sleep doc was a name on a piece of paper of a doctor over a hundred miles away. It seemed kinda shady except for how nice the sleep center was and the fact that my tech actually was knowledgeable (because he actually has OSA). I even got a mask (Resmed Activa) that works for me on the first try.