New to this. Trying to figure it out.

[manwe]

I have been reading through the New Users and Wiki so I'm starting to "know what I don't know yet". I'm having some trouble matching what I'm reading to my experience so far though. So I'll try to keep this brief, but here's the quick rundown of where I'm at. Ok, that's a lie. I'm bad at brief, but here goes:

I think I've always had sleep apnea. I've always been a big snorer even when I was a kid (I'm currently 41), but I rarely ever remembered waking up during the night so I thought I was always getting a good night's sleep anyway. I do not have any other health issues so far, but finally caved to my wife's request to get checked out because she worried about my breathing during the night.

So, at the time I don't think much about it. I was vaguely aware of what sleep apnea was (breathing trouble at night) and that the "fix" is usually wearing a mask with a machine pumping air to keep your airways open. Armed with this flood of information and an already scheduled checkup with my primary care physician, I brought it up during the Dr. appointment. It went something like this:

Dr.: "anything other issues you are having?"
Me: "Yeah, my wife says I have sleep apnea."
Dr.: "Are you tired often during the day?"
Me: "Constantly. Isn't everyone?"
Dr.: "No."
Dr.: Are you tired in the morning when you wake up?"
Me: "Every morning. Isn't everyone? Work sucks right."
Dr.: "No."
Dr.: "Any other symptoms?"
Me: "Umm, I don't know. I can't really watch TV or movies for long periods of time without nodding off. Driving long distances makes me really sleepy. Just normal everyday stuff that most people deal with I guess."
Dr.: "No. Ok, I'm going to send you home with a machine that will monitor your sleep."

That's what about the total amount of feedback I got. I took the machine home figuring it would show what my wife saw and that I had sleep apnea. No big deal. I followed the instructions and wore it through the night. It was a little tough to sleep since I'm a stomach sleeper and wearing the little hose thing under my nose and the thing on my finger made me have to sleep on my back. I really never have trouble falling asleep though (see previous conversation with the Dr.) so I managed to fall asleep and slept mostly straight through the night from what I remembered. Took the machine back in the next day and scheduled a followup. It went something like this:

Dr.: "Yeah, machine shows you have apnea"
Me: "Ok. I figured."
Dr. "I'm recommending an overnight sleep test thing"
Me: "Cool."

He probably didn't use those exact words, but that's what I heard. So, I scheduled with the sleep lab and figured I would go in, they would watch me sleep, hopefully I wouldn't do anything embarrassing, then I would get my vader mask the next morning or something. Problem solved. I got a bunch of pre-appointment paperwork from the sleep lab which mainly consisted of asking me the same 10 questions over and over, filled it out through their website, found some comfortable clothes and went to my appointment. It went something like this:

Sleep Lab Person: "Hi make yourself comfortable and fill out these forms (same 10 questions)"
Me: "I filled out the stuff online"
SLP: "Yeah, these are different."
Me: "Ok" (managed to not argue the point since the questions were phrased in an insignificantly different way. So she was technically correct.)
SLP: "Watch TV while I stick stuff to you"
Me: "Whatever."
SLP sticks roughly 1500 wires to my head and legs. I think she was secretly fulfilling a marionette fantasy.
Me: "This should make sleeping much easier"
SLP didn't respond.
SLP: "Ok. Hang out and watch the hockey game and let me know when you feel tired enough to go to sleep. I'll come in and hook you up to the machine."
Me: "Vader mask?"
SLP: "Huh?" Don't think she was a Star Wars fan.
Me: "Whatever" I was pretty much tired right away (see previous information about always being tired), but I wanted to see the game so I toughed it out for a little bit before calling her back to make me Vader.
SLP: "Ok. I have two masks for you to try so tell me which you like." She tried one on that has two tubes that sit under my nose and another that just covered my nose. She also made some comment about the other kind probably not being good because of my beard. The tubey one felt like it was going to get knocked off too easy so I went with the one that covered my whole nose. She hooked the wires coming from my head and legs to some other machine after I laid down on my back. The air was turned on and the mask was on. Felt weird, but I figured I could deal with it.
SLP: "I'll be monitoring you as you sleep and I may have to come in and adjust things just to let you know."
Me: "Cool. Guess I won't be sleeping naked then. *Nervous laughter*"
SLP: "No." She might have heard that joke before.

So, I managed to sleep on my back again hooked up to the machines with the mask on. I don't really remember waking up until she woke me up.
SLP: "Yep, you have sleep apnea."
Me: "Cool. So do I just take this vader mask or do I get a new one?"
SLP: "No. Followup if you don't hear anything in two weeks."
Me: "Two weeks? Ok."

So I waited two weeks and heard nothing. I called the Sleep Lab to follow up, they then told me that they sent the result to my primary care physician a week and a half earlier and I was supposed to follow up with him. I called the Dr. and asked if they had received the results.

Dr.: "Oh yeah, we got those. You should probably schedule an appt. to follow up"
Me: "Ok." (slightly irritated that they hadn't bothered to call me and let me know they had the results, but whatever.)

I scheduled a followup with my Dr. which I had just this past Wednesday. Went like this:

Dr.: "Yep, they said you have sleep apnea."
Me: "Cool. Do you have my vader mask or should I pick it up at the front desk?"
Dr.: "No. I'll do stuff and someone will probably contact you, then you do something else. Follow up if you don't hear anything in two weeks."
Me: "Ok."
Dr.: "Oh, do you have a deviated septum?"
Me: "I don't know."
Dr.: "Ok, Go see this other guy too."
Me: "Ok."
Dr.: "Oh and here is a printout of several pages of unintelligible jargon with some cool numbers and acronyms."

He probably didn't use those exact words, but that's what I heard. Still not thinking much about this whole process except getting impatient to get my vader mask and get this over with I decide to do a little research. I wanted to know how much more of this I have to wade through before they just give me the stupid mask and I can get on with my life. That brought me here. After the last two days of digging through information here I am slowly starting to understand the process. I'm starting to realize this is all a lot more serious than I probably thought and that I have a ton to learn. I apologize for the long winded description, but I'm bad at brevity and I thought it would be useful to communicate my general ignorance on the subject up until this point. I'm not very confident that I'm getting much good help from my primary care physician or the sleep lab so far, but maybe it's just because I haven't made it to the point when someone will actually sit down with me and explain stuff.

So, all of this was to ask a couple of questions:

1. What comes next? I obviously had my titration study and the pages of information I have are the report, but I'm unclear on what the next step will be. Should I expect that a DME will contact me or possibly it will be a Sleep Doctor from the sleep lab first who will explain my results in more detail.

2. Have I missed an opportunity to do something I should have? I have learned enough to realize that I probably want to force the issue to get the right machine, but I don't think my primary care physician even gave me a prescription. I have the report that he gave me, but I don't know if that's the same thing. I think I've learned that I need to get an APAP machine made by either ResMed or Philips Respironics that has data collection abilities above just compliance data, heated humidifier, and probably one of the exhalation relief things. That's based on the fact that I remember it feeling really weird to me to have to force air out when exhaling and I had a very dry feeling in my throat when I woke up after the sleep lab.

3. Masks are still an enigma to me. I think I understand the differences between the basic types (FF, cover the whole nose, tubey things). I seemed to be comfortable with the one that went over the whole nose so maybe that is fine for me. I do understand that I should try a few different ones if possible, but if the one I used at the sleep lab was ok should I just go with that first?


I'll stop there because I know this is already way too long. Thanks to anyone who makes it through this. I'll keep reading and hopefully have some more specific intelligent questions soon.

By the way, I just re-read this and realized that I seem pretty cavalier about this whole thing. That's just a coping mechanism for me. I realize this is very serious , but I'm trying to keep a good attitude about it and just roll with the punches. I know I have tons to learn.

Rob (manwe)

[JDS74]

Things to do right now.

1) Call the doctor's office and request a copy of the scrip they created and sent to some DME they work with. You may or may not want to work with the doctor's choice. What you want to see is language that gets you a full data machine. The cost is the same but DME's like to give you a non-data machine 'cause their cost is lower and the insurance payment is the same: i.e., they make more money that way and you cannot see how well or badly your therapy is going (and neither can your doctor, for that matter.) When you get it, post back here exactly what it says and get advice about whether is requires a full data machine or not. You may have to go back to the doctor and get it re-written if it leaves to much wiggle room for the DME.

2) Read the report to see what pressures they tried and what worked.

3) Does the report indicate the number and kind of apneas they saw? Obstructive, Hypopneas, Flow Limitation, Central?

4) Call the sleep lab back and get the make and model number of the mask they used. It sounds as if it worked for you and there is no point in getting a different one to start. Later, if that one doesn't work as well as you would like, there is time to experiment later. No sense in making the transition to Darth Vader land more complicated. A second thing to ask them is the make of their equipment. Labs usually use either ResMed or Respironics equipment and getting a machine made by that same manufacturer is a good idea.

5) Call your insurance company and see which DME's in your area are in network for them. At this point, an out-of-network DME will be a real hassle. While on the phone, ask about whether and how they reimburse for purchase rather than rent-to-own. Some insurance companies will do rental for the first 30 days until you prove compliance and then authorize direct purchase so the DME billing hassles are over in two months. Others, just go for 13 months rental and then you own the equipment.

[BleepingBeauty]

First, welcome aboard. You've found the right place to get educated about apnea. Feel free to ask questions; there's lots of help to be had here.

So, all of this was to ask a couple of questions:

1. What comes next? I obviously had my titration study and the pages of information I have are the report, but I'm unclear on what the next step will be. Should I expect that a DME will contact me or possibly it will be a Sleep Doctor from the sleep lab first who will explain my results in more detail.

What comes next for you is not certain. I think it's really unusual that the tech at the lab told you that you DO have apnea; ordinarily, they're not allowed to say anything about the test you just took, and it's on the doctor (either your PCP or a sleep doc - your personal one or at the lab) to give you results. Is your PCP referring you to an actual sleep doctor or to an ENT to investigate the deviated septum issue? Who is this "other guy" he told you to see? As to the DME contacting you, that might happen (if he's referred your case to one of them). I would check your insurance to see which DMEs you *can* choose from; some of them are useless, and some are really great. Unfortunately, most of them seem to fall into the "useless" category, so do your research and try not to get stuck with one of those.

2. Have I missed an opportunity to do something I should have? I have learned enough to realize that I probably want to force the issue to get the right machine, but I don't think my primary care physician even gave me a prescription. I have the report that he gave me, but I do't know if that's the same thing. I think I've learned that I need to get an APAP machine made by either ResMed or Philips Respironics that has data collection abilities above just compliance data, heated humidifier, and probably one of the exhalation relief things. That's based on the fact that I remember it feeling really weird to me to have to force air out when exhaling and I had a very dry feeling in my throat when I woke up after the sleep lab.

The short answer is no, you haven't missed any opportunity. You're at the very beginning, and you've already learned about the type of machine you want (one that provides data is imperative, IMO). We don't know what your test results show; you might have plain old vanilla obstructive apnea, in which case an APAP is likely your best option; an APAP can also function as a straight-pressure CPAP. APAP means Auto, so it can operate within a range of pressures; CPAP is Continuous, so only one pressure can be selected. APAPs are much more versatile. If you don't have just obstructive apnea, you may need a more sophisticated machine. Can you decipher what the report says? Lots of folks black out the personal information on the report, upload it to a photo-imaging site (like photobucket, flickr, imgur, etc.) and then post the images here on the forum so more experienced forum members can see what it says and give more appropriate feedback.

Most modern machines come with some form of exhalation relief. On Respironics machines, it's called either A-flex or C-flex. On Resmed machines, it's EPR (Exhalation Pressure Relief). The very dry feeling in your throat probably indicates that you were mouth-breathing during your study; that's a no-no if you're using a nasal-only mask (as you did) or nasal pillows (the tubey things you describe). If you're mouth-breathing with a nasal mask or a pillows mask, your therapy air is going in through your nose and out through your mouth; it can't do the intended job of keeping your airways open. Some are able to train themselves *not* to mouth-breathe, and some are not able to do that and choose a FFM (full-face mask that covers your nose *and* mouth) instead. Lots of guys with beards use a FFM successfully, so don't let that deter you from the option. It's more challenging with a beard, of course, but it can be done.

3. Masks are still an enigma to me. I think I understand the differences between the basic types (FF, cover the whole nose, tubey things). I seemed to be comfortable with the one that went over the whole nose so maybe that is fine for me. I do understand that I should try a few different ones if possible, but if the one I used at the sleep lab was ok should I just go with that first?

I think most of us start out with the mask that seemed to work well during our study, so that's not an unreasonable idea. However, as I said above, it sounds like you were mouth-breathing with the nasal mask, so it might not be a good option for you. With masks, everything is trial-and-error. We all have different physical attributes (and/or habits, like mouth-breathing) which can make the task of finding the right mask for us a bit challenging. But again, it can be done. Hopefully, you'll get set up by a decent DME who will take the time to fit you properly and see to it that the chosen mask is working well for you. Most DMEs offer a return/exchange policy within the first 30 days, where you can exchange a mask that just doesn't work for you at no charge. It's a good idea to ask about their policies before you get into bed with them.

You can check out all the masks available (and there are many) on our host's website (https://www.cpap.com). There's a good amount of information about each mask they carry; under the basic description, you'll also find user reviews to help you decide what may work for you.

HTH

[manwe]

Things to do right now.

1) Call the doctor's office and request a copy of the scrip they created and sent to some DME they work with. You may or may not want to work with the doctor's choice. What you want to see is language that gets you a full data machine. The cost is the same but DME's like to give you a non-data machine 'cause their cost is lower and the insurance payment is the same: i.e., they make more money that way and you cannot see how well or badly your therapy is going (and neither can your doctor, for that matter.) When you get it, post back here exactly what it says and get advice about whether is requires a full data machine or not. You may have to go back to the doctor and get it re-written if it leaves to much wiggle room for the DME.

2) Read the report to see what pressures they tried and what worked.

3) Does the report indicate the number and kind of apneas they saw? Obstructive, Hypopneas, Flow Limitation, Central?

4) Call the sleep lab back and get the make and model number of the mask they used. It sounds as if it worked for you and there is no point in getting a different one to start. Later, if that one doesn't work as well as you would like, there is time to experiment later. No sense in making the transition to Darth Vader land more complicated. A second thing to ask them is the make of their equipment. Labs usually use either ResMed or Respironics equipment and getting a machine made by that same manufacturer is a good idea.

5) Call your insurance company and see which DME's in your area are in network for them. At this point, an out-of-network DME will be a real hassle. While on the phone, ask about whether and how they reimburse for purchase rather than rent-to-own. Some insurance companies will do rental for the first 30 days until you prove compliance and then authorize direct purchase so the DME billing hassles are over in two months. Others, just go for 13 months rental and then you own the equipment.

Thank you for the help.

1. I just left a message with my Dr. requesting the prescription.

2-4. I don't have the report in front of me, but I made some notes last night that I'm not entirely sure what they mean, but might mean more to someone else:

Recommendation:
nasal cpap at 10cm, 20 min ramp, heated humidity

resmed swift nano fx standard mask


Respiratory: The patient was observed to have had a total of 47 apneas and hypopneas with an AHI Index of 8.6 per hour during total sleep time. The Stage R AHI was 2.7. The normal AHI index is less than 5 per hour. There were 4 obstructive apneas, 0 mixed apneas, 23 central apneas, 20 hypopneas and 0 RERAs. the total RDI (A/H + RERAs) was 8.6. Snoring was resolved with treatment.

Woke up 16.7 times per hour of sleep
Had 43 minutes of Sleep R
AHI total was 19.9
Epworth score is 11/24

5. I plan to contact my insurance company as soon as I can.

[SewTired]

Welcome! I love your brevity.

Next step. Call insurance company. What do they pay and how do they do it? Rental? Pay outright? In network, what are your options for DME? Can you buy online and get out-of-network reimbursement?

Look up and write down the names and model numbers of the 5 or 6 machines that provide actual data.

Go to Sleep Center and get a copy of your sleep study, not just the summary.

[manwe]

... I think it's really unusual that the tech at the lab told you that you DO have apnea...

Take that with a grain of salt. I was summarizing and I don't really remember exactly what she said. I translated it in my head to "yeah, you have it", but what she actually said might have been much different.

... Is your PCP referring you to an actual sleep doctor or to an ENT to investigate the deviated septum issue? Who is this "other guy" he told you to see?

I think he said ENT, but I know that same Dr. is one of the ones that works with the Sleep Lab. I recognized the name on the door.

... The very dry feeling in your throat probably indicates that you were mouth-breathing during your study; that's a no-no if you're using a nasal-only mask (as you did) or nasal pillows (the tubey things you describe). If you're mouth-breathing with a nasal mask or a pillows mask, your therapy air is going in through your nose and out through your mouth; it can't do the intended job of keeping your airways open. Some are able to train themselves *not* to mouth-breathe, and some are not able to do that and choose a FFM (full-face mask that covers your nose *and* mouth) instead. Lots of guys with beards use a FFM successfully, so don't let that deter you from the option. It's more challenging with a beard, of course, but it can be done.

Now that you mention it, I do seem to remember waking up one or twice because of the air "forcing" my mouth to pop open. I think most of the time I was able to keep my mouth shut, but I could be wrong. That's good information though, thank you. If it wasn't "working" though during the sleep lab, wouldn't they have changed masks in the middle of the night or something? I guess I assumed that they must have found a "working" configuration of mask, etc. during the study, but maybe I'm assuming too much.

... Most DMEs offer a return/exchange policy within the first 30 days, where you can exchange a mask that just doesn't work for you at no charge. It's a good idea to ask about their policies before you get into bed with them.

I'll definitely ask about that. I'll see if I can get the full report posted when I get home tonight. Thanks again. I appreciate the help.

[JDS74]

With that number of central apneas, a straight pressure cpap is unusual. That will be a subject to discuss with your doctor.
When you review the report, check to see how many of them occurred at the 10 cmh2O pressure indicated. Look and see how long they lasted. If very short, its likely nothing to worry about but do discuss it with your doctor. Sometimes central apnea events are initiated by higher pressure and the suggested pressure my be lower than they tried when titrating. A higher pressure could have resolved all the obstructive events but gave you the centrals. There might have been no centrals at the 10 cmH2O indicated.

Centrals are not treated by single pressure cpap machines at all. They are just reported.

[OkyDoky]

Respiratory: The patient was observed to have had a total of 47 apneas and hypopneas with an AHI Index of 8.6 per hour during total sleep time. The Stage R AHI was 2.7. The normal AHI index is less than 5 per hour. There were 4 obstructive apneas, 0 mixed apneas, 23 central apneas, 20 hypopneas and 0 RERAs. the total RDI (A/H + RERAs) was 8.6. Snoring was resolved with treatment.

Woke up 16.7 times per hour of sleep
Had 43 minutes of Sleep R
AHI total was 19.9
Epworth score is 11/24

What you have reported here is that half of your AHI is made up of centrals and increased pressure will not decrease them. So it is important that you have a machine that has full data capability to monitor your response to the pressure.
It looks like they have Rx'd 10 which is straight CPAP but I would try to get an APAP because you can run them in Auto or CPAP but with straight CPAP that's the only mode you have.

[manwe]

Respiratory: The patient was observed to have had a total of 47 apneas and hypopneas with an AHI Index of 8.6 per hour during total sleep time. The Stage R AHI was 2.7. The normal AHI index is less than 5 per hour. There were 4 obstructive apneas, 0 mixed apneas, 23 central apneas, 20 hypopneas and 0 RERAs. the total RDI (A/H + RERAs) was 8.6. Snoring was resolved with treatment.

Woke up 16.7 times per hour of sleep
Had 43 minutes of Sleep R
AHI total was 19.9
Epworth score is 11/24

What you have reported here is that half of your AHI is made up of centrals and increased pressure will not decrease them. So it is important that you have a machine that has full data capability to monitor your response to the pressure.
It looks like they have Rx'd 10 which is straight CPAP but I would try to get an APAP because you can run them in Auto or CPAP but with straight CPAP that's the only mode you have.

So does that mean that the "recommendation" part of the printed out report I have is the actual prescription? I guess I expected it would be separate or something and come from my PCP directly. I think I'm confused about who I should be getting the prescription from.

[JDS74]

No, the recommendation is a message to your doctor about what it should be.
Getting an auto machine is a very good idea. Stay away from a single pressure machine.

[OkyDoky]

No I think what you have is only a recommendation. Youy PCP either wrote an RX and sent to a DME or they are waiting for your other doctor to write the RX. This is a copy of Cpap.com's form and even if it is just on a regular RX form it will have these areas covered. http://c0149421.cdn.cloudfiles.rackspac ... on-LMN.pdf

[yaconsult]

Welcome, and congratulations on making it here in the nick of time!

The critical phase is getting a good data-capable machine. There is a conflict of interest with the Durable Medical Equipment (DME) folks that provide the equipment. The cheaper the machine they can get away with giving you, the more money they make. It's a terrible system.

If possible, have your doctor write a prescription for a specific machine - mine was happy to prescribe the "airsense 10 autoset for her" after I explained that I was very active in checking my data and optimising my therapy.

Yes, you are going to have to keep pushing them all to make things happen. I'm in the same boat myself. And I'm stuck with a horrible DME - no other choice under this insurance. They are so bad that they either don't answer the phone, disconnect you, or put you on hold forever. I am going to go to the office in person and get their attention that way. I hope you have better luck. But either way, don't wait for things to happen - check up on progress weekly.

[manwe]

I think I'm posting too fast or something. My last few didn't seem to make it. Being a software engineer myself I will not be judgmental and assume it was my own human error. Hopefully they won't all come through at once or this post will look really silly. Sadly, I'm sure there were some great jokes in there now lost for all eternity. Anyway, since I don't remember all my specific responses i will just generalize:

Thanks <insert previous responder's name here> I really appreciate the help.

I'm not sure who I should be expecting to speak to next, a DME or a sleep doctor. The way the sleep lab seemed to work was that I met with a technician that hooked me up to everything, they then sent those results to a sleep doctor to review, he/she sent then sent the results to my PCP. Up to this point, I don't think I have actually met with a sleep doctor at all. Should I expect to meet with one next or just go straight to the DME?

I will discuss things with my insurance (Blue Cross Blue Shield), but I spoke with them previously and they said they would cover 80% of "any" machine with the other 20% being my deductible. I have maxed out my deductible for the year though because of a surgery my wife had a couple of months ago so hopefully I won't have much out of pocket expense. I did not ask them about how they cover or what DMEs etc. though so I have to call and ask about that stuff.

I'm sure there was something else really clever I said, but I can't think of anything else right now. Just assume it was good and you would have felt better for reading it.

Seriously though, I do really appreciate all the help.

Rob

[yaconsult]

It all varies depending on how your medical practice is set up. In my case, GP (general practitioner) provides referral to sleep doctor. Sleep doctor doctor meets with me and due to last sleep test being 7+ years ago orders new sleep study. Based on sleep study results, sleep doctor write prescription and sends it to DME. Then, DME does nothing until I go there and start bugging them - today.

It sounds like in your case, your GP just went ahead and scheduled the sleep study. Your medical practice might not have dedicated sleep doctors. But the sleep lab diagnosis is what is needed for the three most important reasons: getting a prescription, getting insurance approval, and getting an initial pressure setting.

So, the prescription has to go to DME. DME contacts insurance to make sure they will get paid. DME should contact you and arrange for you to get equipment. But you well may have to bug them about it. They are not in a hurry - you are!

Again, my personal advice would be to get your doctor to write a specific prescription for the machine of your choice and give it to you as well as sending it to the DME. This will avoid the usual DME issue of them trying to foist a low-end machine on you.

[manwe]

It all varies depending on how your medical practice is set up. In my case, GP (general practitioner) provides referral to sleep doctor. Sleep doctor doctor meets with me and due to last sleep test being 7+ years ago orders new sleep study. Based on sleep study results, sleep doctor write prescription and sends it to DME. Then, DME does nothing until I go there and start bugging them - today.

It sounds like in your case, your GP just went ahead and scheduled the sleep study. Your medical practice might not have dedicated sleep doctors. But the sleep lab diagnosis is what is needed for the three most important reasons: getting a prescription, getting insurance approval, and getting an initial pressure setting.

So, the prescription has to go to DME. DME contacts insurance to make sure they will get paid. DME should contact you and arrange for you to get equipment. But you well may have to bug them about it. They are not in a hurry - you are!

Again, my personal advice would be to get your doctor to write a specific prescription for the machine of your choice and give it to you as well as sending it to the DME. This will avoid the usual DME issue of them trying to foist a low-end machine on you.

Ok, thanks. I think it's starting to sink in. I'm waiting to hear back from my PCP about getting the specific prescription then I'll push for one naming a specific machine. I'm thinking the ResMed AirSense 10 AutoSet with HumidAir Heated Humidifier since the sleep lab seemed to already recommend a ResMed mask.