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Newly Diagnosed with Apnea - Have I been screwed? - Printable Version

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Newly Diagnosed with Apnea - Have I been screwed? - carrielsal - 04-04-2015

I have recently been diagnosed with sleep apnea. In the last week I have spent considerable time researching sleep apnea and reading through this forum. I already had questions for my family doc I need to ask, but as I read about apnea and CPAP's, I realized how much I didn't know and should be asking about. I am currently waiting on a call back from family doc on Monday. Any insight from the people on this board who are knowledgeable would be greatly appreciated!

I'm a 50 year-old woman with no major health problems. I have always been physically active and played numerous sports until a couple years ago. I started experiencing intense fatigue that has gotten progressively worse. I am tired from the moment I get up in the morning. I rarely hear my alarm clock in the morning and oversleep a couple times a week. I've never been a napper. I don't fall asleep while working, driving or watching TV during the day.I am a Technical Account Manager for a technology company. By Friday afternoon I am mentally exhausted and experience decreased cognitive abilities. I stopped hiking and playing sports, because I'm just too tired. Even going to the dog park has become a major effort. I'm just too darn tired. I've gained over 40 pounds the last 18 months. After finding no other underlying medical problems, my family doc referred me to a sleep study center to rule out sleep apnea.

The next week the sleep center called me to schedule a study. The scheduler said she had checked my insurance the study would be covered at 100%. I was busy working and took her word for it. I scheduled the study and went to the center 3 weeks ago. The only person I saw at the sleep center was the tech who hooked me up to all the wires and unhooked me the next morning. The following week I followed up with my family doc. He gave me a copy of the test results, told me I had sleep apnea, and prescribed a CPAP titration study. The next day I called the sleep center. The scheduler setup an appointment and told me my insurance didn't require pre-authorization for a CPAP.

Last Friday night I went back to the sleep center for a CPAP titration test. When I got there, the tech showed me about 6 masks to include full face, provided some limited info, and asked me which one I wanted (how should I know?Huh). I chose the Mirage FX, only because I have a friend with apnea and that's what he uses. At 4am the tech woke me up (I'm barely awake and cognizant). The tech said I didn't breathe through my mouth during the night, so the Mirage FX should be fine. He gave a Resmed Air10 CPAP with some basic information and tole me I should contact them every 3 months to get my mask and filter replaced. When I asked about follow-up I think he said I'd need a follow-up study in a year (this is now probably 4:30am, and I'm barely awake even after a cup of coffee). At that point we were finished, and I left. The only person I saw during this visit was the tech.


These are my concerns.

-Shouldn't I be following up with someone other than my family doctor? I have never seen or spoken to the doctor who interpreted my initial sleep study. I googled the interpreting doctor listed on the study results. He's an ENT doctor at a city 3 hours from here. He's certified in Sleep Medicine and Otolaryngology-Head and Neck Surgery. I have a friend who as apnea. He sees a neurologist.

-Shouldn't I be following up with a neurologist? What if my settings needs to be adjusted? I don't think my family doctor would be following up with. My CPAP is set to a pressure of 6.
I have been faithfully using my CPAP every night for the last 7 days. The machine shows I have a good mask seal and my AHI's range from .5 - .8 every night.

-How could my insurance cover this at 100% like I was told by the scheduler at the sleep center? Possible unethical medical insurance submissions by the sleep center? I have Aetna through my employer. Last week I reviewed my 2015 benefits plan, and it does NOT cover sleep studies or durable goods 100% like the sleep center had told me. My medical insurance covers 80%. Aetna's website even shows what the out of pocket expenses would be for various sleep centers in my area (this center was not listed). 15 years ago some procedures such as outpatient surgery and MRI's were covered 100%. In the last 10 years with the rising cost of healthcare, only preventative healthcare has been covered at 100%. My co-pays and deductibles have increased every year.
My initial study was performed March 7. As of today, the sleep center still has not filed either studies or CPAP with my insurance. Yesterday when I spoke to the nurse at my doctor's office, I told her about my insurance concerns. The nurse told me her husband had previously had a study at the same sleep center. They had been told by the sleep center prior to scheduling the study would be covered 100%, and when their insurance was billed the study was covered at 100%. Something about this just sounds like shady insurance filing practices.

-Reading through the boards, it sounds like I have been given a very limited machine. Shouldn't someone have talked to me about CPAP machine options? It's not like a CPAP is a disposable commodity that can be replaced in a few months.




RE: Newly Diagnosed with Apnea - Have I been screwed? - truetopath - 04-04-2015

Sounds to me like you definitely got assembly line medical care. I'm sure an ENT is capable of treating sleep apnea, so I'd be ok with that. Regarding the machine I would march back in there and tell them you want a fully data capable machine so that your doc can better manage your condition. The AHI of .5-.8 is great, but without knowing the breakdown of obstructive/central apenas and hypopneas, how can you manage treatment.


RE: Newly Diagnosed with Apnea - Have I been screwed? - carrielsal - 04-04-2015

(04-04-2015, 11:42 AM)truetopath Wrote: Sounds to me like you definitely got assembly line medical care. I'm sure an ENT is capable of treating sleep apnea, so I'd be ok with that. Regarding the machine I would march back in there and tell them you want a fully data capable machine so that your doc can better manage your condition. The AHI of .5-.8 is great, but without knowing the breakdown of obstructive/central apenas and hypopneas, how can you manage treatment.

The ENT interpreted the study, but I have never seen or talked to him.




RE: Newly Diagnosed with Apnea - Have I been screwed? - truetopath - 04-04-2015

For what it's worth, my primary doc manages my sleep apnea, which I prefer because he writes the script for what I need and I interpret my own data and adjust my pressures accordingly. I don't reccomend doing this if you're not comfortable, but I've been in the medical field for 12 years and have a certain comfort level with things.


RE: Newly Diagnosed with Apnea - Have I been screwed? - carrielsal - 04-04-2015

(04-04-2015, 11:50 AM)truetopath Wrote: For what it's worth, my primary doc manages my sleep apnea, which I prefer because he writes the script for what I need and I interpret my own data and adjust my pressures accordingly. I don't reccomend doing this if you're not comfortable, but I've been in the medical field for 12 years and have a certain comfort level with things.

My family doctor told me I should start feeling better after a few days of using a CPAP. I didn't expect an immediate cure, but after a week of faithfully using the CPAP I don't feel any relief from the overwhelming fatigue. The CPAP titration study only provides data for a single night. I would assume that the initial CPAP pressure setting is just that, an initial setting, and may need adjustment. Do doctors normally use the data gathered from the advanced CPAP machines to determine if and what changes need to be made?




RE: Newly Diagnosed with Apnea - Have I been screwed? - trish6hundred - 04-04-2015

Hi carrielsal,
WELCOME! to the forum.!
Here is a link with lots of helpful information: http://www.apneaboard.com/wiki/index.php?title=Archangle:Machine_Choices
I didn't see the doc that interpreted my sleep studies, I went to my regular doc regarding them.
Hang in there for more answers to your questionsand much success to you with your CPAP therapy.


RE: Newly Diagnosed with Apnea - Have I been screwed? - Sleepster - 04-04-2015

Hi carrielsal,

It sounds like you've done everything you can concerning the insurance payments. It may be that the sleep lab you went to simply takes whatever the insurance company pays them and is done with it. If not, you'll find out when they bill you. There's nothing more you can do about that. You've got enough other stuff going on to worry about.

As far as the doctor situation, it's always the norm that doctors review the sleep study results and then report the results and their diagnosis to the doctor who ordered the sleep study. That's your family doctor. If you're concerned about the effectiveness of your treatment it's that family doctor that you call first. He or she may want to review the data collected by your machine, have the medical provider (DME) who supplied the machine review the data and get a summary, or refer you to another doctor who practices sleep medicine such as a pulmonologist who specializes in CPAP therapy.

As to the data you see yourself, you have a very low AHI so that's good. Normally we'd want to see the breakdown of that AHI (there are three separate numbers that sum to the AHI) but since yours is so low that's not an issue. The other thing is usage (compliance). Make sure that the machine is reporting the number of hours you're using it. The reason is we want to make sure that you're not taking the mask off during the night and having no memory of it.

The other thing you need to look at is the leak rate. Make sure that the leak rate is low. You get the "smiley face" on the screen every morning, right? That indicates your leak rate is not terrible, but it doesn't assure us that it's as good as it can be. If your machine is data capable you can use software to view the leak rate graph. I don't know if your machine has this capability or not.

So, I think things look good for you so far. It's normal for it to take some time before you start feeling better. Some new CPAP users have a much harder time of it and it takes them weeks just to be able tolerate sleeping with the mask on. So you're ahead of the game there. Just keep at it and one of these mornings you'll wake and feel like you actually got some good sleep. It may not be an earth-shattering experience, but it will happen. And then it may be several more mornings before you have that feeling again. But gradually as time goes by you have more and more of those mornings. It just takes time.

Meanwhile, you are saving your life because without CPAP therapy you place a huge strain on your cardiovascular system leading to an increased risk of heart disease or stroke.



RE: Newly Diagnosed with Apnea - Have I been screwed? - carrielsal - 04-04-2015

Thanks sleepster! After finding this forum, one of the first changes I made on my machine was to enter clinician mode and changed the Essentials setting from On to Plus. My leak rate has been averaging 10-11L/min, and the hours used reported by the machine appear to be about the same amount of time I am sleeping. The only issue I had was the second night. I woke up in the morning and the hose was not attached to the mask. When I looked at the machine it reported 1.5 hours of use, so I assume that's when I knocked the hose loose.

I don't remember the sleep center telling me anything about returns/exchanges on the machine and mask and there's nothing in the paperwork I received. I have emailed the scheduler and asked her to send me a copy of my prescription (which I never received). I will be meeting with my family doc on Monday. I am going to ask that my machine is replaced with a fully reporting machine. I don't see any other way any doctor can evaluate the effectiveness of the CPAP study without performing another sleep test.


RE: Newly Diagnosed with Apnea - Have I been screwed? - OpalRose - 04-04-2015

carrielsal,
Ask your Doctor for a fully data capable Auto CPAP (APAP), this way you can use it in auto mode with a range of pressure or in straight CPAP mode with a straight pressure.
There should be no problem switching machines. Insurance pays the same regardless of which machine you get.
Good luck
OpalRose


RE: Newly Diagnosed with Apnea - Have I been screwed? - retired_guy - 04-04-2015

I'm a big fan of Sleep Apnea, and treating it. But I'm not convinced that is your only issue, from the symptoms you described in your first post.

Do you have a copy of the sleep report itself? What were your results during your sleep study?

Your Doc should have this, and I would ask him for a copy.

Your results so far are great! So no problem there. It's just that I would like to see what they were before treatment, and evaluate whether or not that indicates issues that were/are causing your difficulties.

I assume Doc did the usual blood tests to check for any other issues? I'm not really wanting you to have any other issues, but Sleep Apnea is not the only thing that can cause us to be tired and gain weight. Simple things even..... You're just coming out of Winter, even in the great state of Texas. Open the windows, get some sun, take some vitamin D.... Just the stress worrying about what will become of the Cowboys is enough to cause some anxiety.