Newbie Story - With Questions

Hi All,

I have been intently absorbing all the information from the CPAP Talk forum. What a wonderful resource. Of the hundreds of questions I had most were answered here. The care and compassion you all have for each other is very supportive.

My wife said I would stop breathing while sleeping and my snoring would wake her up. So, in September 2008 I went for a sleep study. There was not time for a CPAP titration but the report came back with moderate sleep apnea (AHI=23.1) coming in clusters mostly while on my back. In February 2009 I was diagnosed with Dilated Cardiomyopathy (DCM). Since I know sleep apnea can contribute cardiac problems I decided to get titrated in March 2009.

The CPAP titration was one of the worst experience of my life. I used a different sleep lab than the the one I used for the initial study. I am not sure if that was a factor or not. I tried a couple masks. The best one left marks on my forehead and the bridge of my nose. That was nothing compared to the soreness of my upper lip. I saw myself in the mirror while getting up to use the bathroom. Between the mask and the sensors I looked like Hannibal Lechter from Outer Space. I didn't pull any punches on my feedback form. Bottom line I got titrated to a pressure of 8.

The DME called me to set up an appointment. Based on what I was reading here I was curious to know what machine I was getting. They said the doctor requested a ResMed S8 AutoSet II with humidifier. Cool! Sounds like a good one. So I came here to learn about masks. Very pleased again when they recommended the Swift LT Nasal Pillow mask. No facial trauma like I had during the sleep study.

Last night (4/10/2009) was my first night sleeping with the CPAP. I was very pleased that I made it through eight hours without major distress. By absolute standards it was not a good night's sleep but it was good for a first night's CPAP sleep. I checked the ResMed machine in the morning to get my numbers. AHI was down to 16.5. Not ideal, but a step in the right direction. Mask Leak was 0.58. Not very good. But when I got up to use the bathroom I took the mask off and left the unit on. I guess the machine saw this as a huge leak.

My only physical problem was one sore nostril. Normally I would be upset but I have read here that this is not unusual and will go away. In the mean time I am using ChapStick on my nose until I can find the Lanolin. I also picked up Ayr Saline Nasal Gel to soothe my nose.

Now for the questions:

When I get up to use the bathroom should I turn off the machine?
But then what about the ramp? I have it set at 10 min to come back up quickly.

I took a nap this afternoon for 44 minutes. My AHI went up to 25. Am I really that bad or could it be that I was awake much of the time. I don't want to accidentally skew my numbers.

The doctor has the S8 set to CPAP mode even though it can do APAP. Am I missing out on anything by not having APAP? The concept of auto-titrating sounds like a great concept.

The DME told me not to put the data card into the machine until the doctor told me to. Any ideas why?

An interesting piece of info from the DME was to use the machine at least four hours a night for at least five nights a week. That is the minimum the insurance company (Aetna) needs to keep paying for the unit. If I don't meet that they can refuse to pay.

I am sure there are at least half a dozen other questions that I can't remember right now. But I have rambled on enough for now. I can always post a new question.

Thanks for being a resource. You make a difficult time easier.

Mark in NJ (Ganesha)

Hi, welcome to the forum and hope we can help you. You may not know it, but sleeping on your back is the worst position with OSA - causes more apneas, so your "real" number might have been lower than your test, though it doesn't mean you don't have apnea. If you just get straight out of bed, use the bathroom and go straight back, you could probably leave the machine on as many do because it will otherwise not necessarily record things properly if the 'event' occurred before 4 hrs were up. If a gap shows up on the stats, or records as a very large leak as a result of leaving the machine on, you can just explain what happened. Also, you should use your machine every time you nap, because it's just as meaningful as any other sleep, whether or not your machine records a proper session - your body will be aware of it. The DME was right about the 4 hours/night, but compatibility for insurance should not be your main goal, proper sleep is, of course. Now, has anyone ever told you that when you sleep your mouth falls open? If so, then it's important that you address it, because with a nasal mask, you'll be losing all the 'good' air, which may be why your AHI was high. You may need a 'full face' mask instead, so your mouth can stay open without the Cpap air being lost. The business about the data card is just nonsense. If you have a card reader (needs to be a specific type however), plus the software that can interpret your results through the reader and your computer, you can begin to manage your own care quite effectively, but the DME's and even many MD's don't necessarily like that, but that's their problem, not yours. There are lots of people on the forum here, long time experts, who can help you get organized about how to do it all, so keep posting and asking for help with it (I don't use the S8, so would not be the best person to do so now... sorry). Your MD may want to see your results prior to putting you on Apap, but you might want to talk to him more specifically about it, find out why he felt it necessary.

Hi Mark ,while i'm new to all this myself i can tell you you can find lanolin at walmart near the breast feeding pumps ,this will help greatly with keep you nares from being sore and will also provide a good seal ,it's made by lansinoh it works great,my dme also told me about using the machine so the ins.co. will pay for it ,i don't remember the amount of time but like they say use it or lose it .....or pay for it out of pocket . good luck !

Ganesha wrote:When I get up to use the bathroom should I turn off the machine?

Yes, to keep your leak number meaningful.

Ganesha wrote:But then what about the ramp? I have it set at 10 min to come back up quickly?

As I understand it, the machine will not score events during ramp time. That is nice if you are keeping track of your numbers because it will keep the centrals that can naturally occur as you fall asleep from being counted against you. Some hit the ramp (or turn the machine off then back on right away) whenever they wake up at night for that reason.

Ganesha wrote:I took a nap this afternoon for 44 minutes. My AHI went up to 25. Am I really that bad or could it be that I was awake much of the time. I don't want to accidentally skew my numbers.

It is good to always use the machine whenever you sleep. Were you on your back? Also if you were doing the dozing-in-and-out thing, that can do a number on your numbers. But that's OK. Dozing in and out for an hour is kind of a nice thing to do right now with the machine on. Every time your body goes to sleep with the mask on and wakes up with the mask on, it learns that the mask and the air are OK for it. That helps you get used to it.

Ganesha wrote:The doctor has the S8 set to CPAP mode even though it can do APAP. Am I missing out on anything by not having APAP? The concept of auto-titrating sounds like a great concept.

Smart doctor! One day you may want to move over to APAP mode, but for now you may want to cooperate with the doc's gameplan as much as you can. After a while, you can ask your doc if he/she minds if you try a higher pressure, or try APAP with the minimum set at your titrated pressure, to get your AI and AHI down, if they are obstuctive events and that is possible for you. He/She may have a reason for not agreeing to that yet, though.

Ganesha wrote:The DME told me not to put the data card into the machine until the doctor told me to. Any ideas why?

Hmm. Not sure why. It shouldn't matter. But I would play along. You can get the info you need from the screen right now on that machine anyway.

Ganesha wrote:An interesting piece of info from the DME was to use the machine at least four hours a night for at least five nights a week. That is the minimum the insurance company (Aetna) needs to keep paying for the unit. If I don't meet that they can refuse to pay.

The insurance needs proof you are compliant in the sense of using the machine that minimum of time. Of course, you know to use it every time you sleep for the whole time you sleep. And "compliance" beyond that is another matter.

Ganesha wrote:I am sure there are at least half a dozen other questions that I can't remember right now. But I have rambled on enough for now. I can always post a new question.

Right now you should be concentrating mostly on getting used to the routine of sleeping with the mask on and getting into good sleep hygeine habits. Step two will be getting your leak down to 0.0 on that machine. (Is "Swift" chosen in the mask setting on your machine?) Julie's point about addressing mouth-leaks is important, since you are using nasal pillows. Step three will be watching you AI number and ignoring your HI and AHI numbers for now. You can worry about them later, maybe.

Be sure to get personal copies of your sleep studies and a personal copy of your prescription. The info from your sleep studies will help you down the road if you need to tweak how much pressure your machine puts out.

Keep doing the research and keep asking.

It's nice having you here. Keep learning, but have fun here too. This forum is good for both!

jeff

Thanks Jules and Vipertec,

My mouth does open once in a while, but less since I can now get air though my nose.
As for the lanolin... I will be making a trip to Walmart tomorrow.

Mark

Jeff -

I like the tip about the quick off and on when getting up at night. With a ten minute ramp that should cover the numbers.

Regarding the nap numbers: Mask Seal = 0.02, AI = 3.2, and over 20 hypopneas.

Thanks,
Mark

I predict that it won't be too long before you stop having to get up at night to pee.

In my case, having to pee in the middle of the night was caused by high blood pressure....elevated because of sleep apnea.

You'll probably find that a side benefit to CPAP therapy is lower BP.

Thanks Gerald. I didn't know that getting up was a by-product of high blood pressure. I always just chalked it up to prostate (BPH).

Ganesha wrote: The DME told me not to put the data card into the machine until the doctor told me to. Any ideas why?
Mark in NJ (Ganesha)

On the Resmed the data card is not left in the machine like it is for the Respironics. When you need to download data, it is inserted, loads the data, and you remove it, all pretty quick. I don't know for sure what would happen if you left it in, but it has a flashing message to remind you to remove it.

It doesn't erase anything, so if you decide to get a card reader and software, you won't cause any trouble with the data by using it in between when the doctor asks for the card. In fact, the card only holds 3-5 days of detailed data, so if you don't download more frequently, that detailed data is lost.

I knew I forgot something in my first reply - are you aware that the ramp is only there as a comfort factor for people who feel the need of it, and that you can choose not to use it at all (which most of us do beyond the first couple of days)? If it's getting in the way of your comfort by using it, try not doing so and see how things go.