4 month check up today...another sleep study

[Kahfree]

So...today was my four month check and although I am at 100% compliant, I am not keeping the mask on for four hours or more. At best, my average is 2.5. The doctor has ordered and scheduled another sleep study in hospital because they want to see me tearing the mask off at night...as how they put it, and to determine if perhaps the setting is wrong.

The doctor told me that when in Rem sleep, about two hours after I fall asleep, I may be experiencing apneas that do not respond to the pressure setting of a 9 now, so to determine if my REM sleep is the cause of some apneas, they need to find out if I need adjusting. Funny thing is, back in February, I asked them to take the machine I have now and give me one that will adjust to my apneas during sleep and I was told I did not need one that they already determined that I am at the correct setting, so they gave me a fixed machine.

So, what happens if I need one that auto adjusts, do they take back this one and give me a different one or am I up a creek?

Some nights, even on the machine, I wake gasping for air so bad I feel as though I am dying, and other nights, I sleep sound. How can it be so different? Anyway, in June I will have the second study in 6 months. The doctor did tell me that the good in this is that I am 100% in using the machine EVERY night, so that shows effort on my part to use it and get it to work, which is why they can press forward and order the new study. I suppose a person who never uses it wont get the same treatment?

Kelly

[Gerald]

Kelly....

You should push hard for an auto-adjusting machine that is full-data capable. The machine should either come with software....or be capable of using software that you purchase....so that you can carefully monitor your own progress on your own computer....and so that you can print out nightly results with charts that you can study....or bring to the doctor's office for discussion and analysis.

You should not allow them to treat you like a child......telling you what you can or can't do. You are an intelligent lady....and they should be assisting in your therapy....not dictating it. Be proactive....not submissive.

G

[Pugsy]

Kelly, I agree with Gerald. All this could have been avoided if you had been given an auto at the beginning or at the very least a machine where you could actually see on a time line with software, what was going on.

Geez. They make it out so much harder than it is. I am worse in REM, I do often need higher pressures and my titration study didn't get it right either. Big surprise there. Maybe they caught me on a good night and maybe that less than 3 hours of pitiful sleep during titration study wasn't enough to even get to REM much. I know I woke up more times than I can count.

What will they do if you need auto machine? Don't know. They might simply try you on a higher cpap pressure in hopes of warding off the events. Depends on your insurance now what and if changes can be made in machines without digging into your pocket book.

Is there any way financially that you could swing an APAP and keep the Icon as backup, should they try to stick you with it?
Cpapauction often has the PR S1 Apaps very reasonable and software is easy to get. ResMed doesn't allow their products but if you found a S9 Autoset somewhere that was gently used (craigslist).... Just a thought for down the road if thing lean toward that direction. Software for those 2 machines is much more comprehensive IMHO.

[Gerald]

Kelly...

If you aren't sure what to do, just look at Pugsy's equipment list and get the same stuff. You can't go wrong by simply emulating Pugsy.

G

[Janknitz]

Not everyone needs an auto-machine, but your story, Kelly, illustrates why everyone should have an auto machine, anyway. How much are you and your insurance company going to put out for a new sleep study, when a difference of maybe $50 to $100 initially for an auto machine (and actually, your insurance would not have paid a penny more!) would allow a home titration to see what's going on in your REM sleep in your own bed and with your own sleeping conditions? Then the treatment range could be set to cover those REM events if needed. Instead, the doctor and sleep lab are going to make a lot more money off of you, but you will be no further ahead with the machine you have.

If you do end up needing an auto machine now, you are probably going to face an uphill battle getting it paid for. Check out my new post here: http://maskarrayed.wordpress.com/2011/0 ... h-a-brick/ about trying to negotiate with the DME to "upgrade" your E0601 machine.

The best thing you can do between now and your next sleep study is to call your insurer and ask "what if" questions--what if your doctor now recommends an auto machine? Most insurers will say "tough luck" because an auto is an E0601 machine and we already paid for (or are paying for if a rental) one E0601 machine. In the insurer's eyes, and E0601 is an E0601, regardless of whether it's a straight CPAP or auto. Remember, they are bean counters, not humans.

So the battle falls with the DME--are they willing to give up some profit to make sure you are getting the treatment you need? Unfortunately, the answer is often no (it's worth trying, however).

There are a few strategies you can employ here. One is that if your doctor now concludes you do need an auto machine, perhaps he can be persuaded to order a BiPAP instead (assuming you meet the coverage criteria of your insurer, and you may because you have "failed" CPAP). A biPAP has a DIFFERENT HCPC's billing code, so your insurer will be more likely to cover it.

The other option is to buy your own auto out of pocket. You can save a lot of money online or used via secondwind.com, cpapauction.com, craigslist, etc. Make sure you know your deductible and co-pay for the new sleep study--maybe that would be better spent buying your own auto machine?

[chunkyfrog]

I bought my S9 autoset on my own, 10 months after I was issued a S9 Elite--also a great machine-just not automatic;
but I now know that my weight loss has resulted in poorer mask fit and unexplainable fluctuations in pressure needs.
Thank goodness that I was willing (and able) to invest in a better machine.
I am the only one (besides people who really care about me) who believes I'm worth it--not the lab, not the DME, not the doctor, and
certainly not Blue Cross/Blue Shield!

[archangle]

If they had simply given you an auto machine at first, they might have been able to figure most of this out without another sleep study. They could set the machine to auto and read the recorded data to help figure out what is happening when you have problems.

Of course, that assumes that they're interested in treating you instead of maximizing their profits by running another sleep study.

[Pugsy]

If they had simply given you an auto machine at first, they might have been able to figure most of this out without another sleep study. They could set the machine to auto and read the recorded data to help figure out what is happening when you have problems.

Of course, that assumes that they're interested in treating you instead of maximizing their profits by running another sleep study.

Yep, all could have been avoided. But then they would miss out on chance for making the big bucks with sleep study and reading the damn thing. Never mind that the patient has spent 4 months struggling when it was so easy to eliminate at least that one variable at the onset.

[LaurieP]

I believe I would have been in the same place as you. When I went for my follow up after the first sleep study she mentioned another sleep study I told her there is no way I can afford another 3K. She said we could do this at home than with an auto machine than read the reports. It has worked really well for me and I meet today with the DME to go over the reports. I already know what they say as I have been looking at them every morning, thanks to this board.

These people have great advice and have been most helpful, they won't steer you wrong.

Laurie

[cindy58]

Kahfree,

My sleep study was a complete waste of time and money...said I didn't have OSA! Had a good talk with my Dr and he perscribed an S9 Autoset. Did the sleep titration at home with the S9 and guess what.... had a whopping 127 hyponeas per/hour. Sleep lab was so noisy: won't go into the rest as it's a very long list of screw-ups.

Strongly suggest you demand to your Dr he/she gets you an Auto machine and test at home. It saved the $800. out of pocket for a second lab to titrate me and I got a better deal. Yes, talk to your Ins. about having the scheduled 2nd. sleep lab and find out what they will pay. It may be less expensive to have a home titration than go back in the lab again. Perhaps an APAP will stop you from ripping off your mask because it will give you the pressure you need when you need it. It did take about a week to get used to the 'boost' in pressure (it woke me up a lot at first) but the body got used to it and no problems after that, and I've been at this for 13 months. A real life saver!

Wishing you all the best,
Cindy

[archangle]

Kelly, be sure to check with your insurance that the second sleep study is covered. You could easily be shafted for $3000 out of pocket if the insurance doesn't cover it.

[Wulfman...]

I agree with everything the others have said.
It seems to me that if you'd have gotten a data-capable machine and the software in the first place, you would have been able to figure all this out a long time ago.
I think you would still be money ahead to get a better setup NOW. Otherwise, you're going to be paying through the nose for additional sleep studies.......which may NOT be conclusive as to the issues you're trying to resolve.
What happens if you don't take off your mask during the sleep study?
What is another sleep study this soon going to cost you?
Chances are, you could buy a helluva good machine and software for that amount.


Den

[kteague]

Funny thing is, back in February, I asked them to take the machine I have now and give me one that will adjust to my apneas during sleep and I was told I did not need one that they already determined that I am at the correct setting, so they gave me a fixed machine.
Kelly

Looking in my crystal ball, seeing the new study show you do need a higher pressure, and them saying they will increase the pressure on the machine you have since they've determined you are now at the correct setting.

Question for you, in your titration study, were they able to capture significant time in REM while supine? If not, the test was technically suboptimal, and I wouldn't be happy about their response to your request. Either way, I certainly would express to them that their decision about the machine has put you in this position.

Let us know how this pans out.

P.S. They could instead order a two week trial on an auto titrating machine to assess your pressure needs. I had that done.

[Kahfree]

Wow...so many excellent replies. I was not online yesterday because I am in the midst of moving.

I am going to call the Insurance company today and question them. Then, I am going to call the DME and ask a "What if" question or two, or more.

If all else fails, I will purchase my own apap machine. The one I have is technically a "rental", so I don't own it. For that reason, I was wondering if they would switch it out to the Auto. Obviously if one does not own something, then I can turn it back in, like a house I rent. LOL

During my original sleep study, I could not sleep the entire night, so they based my diagnosis on 119 minutes of sleep. (I guess I did sleep at the end, but felt awake) Since they could not test a cpap, apap, etc on me during the sleep study they sent me home for one week with the apap and that is how they determined that the machine found that for 90% of the time the pressure of 9 was working for me.

I questioned them that what if my Apnea changes and gets worse, or better, the pressure is not correct. Lets face it, nothing is consistent on a daily basis. Even diabetics have to adjust insulin to meet the changes in their body. That is the reason I felt better with an auto machine, but was refused because this doctor I have believes the readout, not my body.

Here is the strange thing. Last night I used the machine 4.7 hours without taking it off. I woke at 6 am and did not realize I even had it on, and was happy to find that I took it off for the day and REMEMBERED doing so. The sleep study was paid in full last year for me by my insurance, but that is because I met my deductible with other medical visits. Having the sleep study will meet my deductible and the rest of the year is paid in full for all things medical, but not the actual products for OSA because the stupid DME never informed me (when I was first diagnosed and new to all this and trusted a hospital and doctors, when I should not have) that they are not a preferred provider for Aetna, which means all money so far applied to the deductible is not there, its on the Out of Network, which is 5k and not my 2k.

I feel so trapped in a giant medical tube that keeps twisting. Everyone here is right though, its not me they care about, its how much they can make off of me without considering my financial needs. I guess I could claim hardship at the hospital and get charity payment.

I will let everyone know the results of the insurance questions.

Thank you, Kelly.

[cotech50]

In my sleep study I got only 45 min but enough to also be given an auto with a 7-15 range. Went back for titration and 14 was the bogie and I knew it. The Pulmonologist suggested auto with the range of 11-15 and have not looked back since. Auto is the only way to go!!!!