I pick up my machine today

[NotLazyJustTired]

Hello all. First time poster here.

First bear with me as I give some background. I have always been a person with low energy which leads me to believe I have suffered with SBD for most of my life. As a youngster I was quite thin; I weighed barely 150 dripping wet when I graduated high school. I am 52 and nearly 60 lbs heavier now. After reading Dr. Park's book "Sleep, Interrupted" I now believe that I was a classic UARS case in that I had frequent episodes of nearly passing out if standing up too quickly. I have noticed over the last several years that the energy levels have really dropped off. At one time I had so many hobbies that my wife would comment that I just move from one obsession to the next. Today it is fair to say that I don't have any hobbies, well maybe watching movies and TV. For the last 15 years or so I always needed a nap after work and for the last couple years I have even resorted to sneaking little cat naps in at work with my office door closed during lunch.

Like so many others it never occurred to me that I had SBD. What actually got me on the road to being diagnosed was acid reflux. Interestingly this is what got Dr. Parks looking into his sleep breathing paradigm. I just figured the reflux was waking me up and that was causing my daytime fatigue. I started off using Pepcid products and that helped for a while. Then I started using OTC Omeprezole. When that stopped working my wife commented that I should go get a prescription and at least insurance would pay for it. On my first visit to the primary care physician I commented on the acid reflux but also asked his opinion on why I am so tired all the time. My doc is gold. He asked me about a ton of other things and also noted that I had moderately high blood pressure. Some of the symptoms he asked about was joint pain, headaches, allergies, sex drive, and had me fill out a questionnaire (which I now understand is the Epworth Sleep Scale, I scored a 13). He indicated in that first meeting that I most probably had OSA and referred me to a sleep specialist. Also the blood work came back and showed that I am hypothyroid and I take 50ugm of Synthroid.

Well it took a few weeks to get in with the sleep doc. It was another full three months before I could get into the sleep lab. In all that time waiting I had done extensive reading on OSA, its side effects and treatment. I was fully convinced I had OSA. Then came the night of the sleep study. I think the anxiety and excitement of finally getting to that point created a bit of insomnia for me, but I did end up sleeping for over 5 hours (though it seemed more like only 2 hours to me).

Another couple of weeks passed before my follow up with the sleep doc. The first words out of his mouth, "You do not have sleep apnea, but you do snore pretty loudly." This was followed by an extensive explanation on how snoring by itself does not indicate a sleep disorder. I was in complete disbelief and was starting to think about looking for a second opinion. But then he started discussing the actual results of the sleep study and what it all meant. It turns out I had an AHI of 1.8 (hence the diagnosis of no sleep apnea), but an RDI of 40.1. He explained that insurance companies, especially MediCare, don't even look at RDI and will not cover treatment if the AHI is under 5. And that seemed to be where he wanted to leave it. So I started probing him with questions like could my fatigue be related to other things like hormones, or could the high RDI count come into play. He kept going back to the insurance debacle. I was getting very upset at this point. I really don't give a crap about what insurance covers, I just want to get fixed. In the final analysis he assured me that the high RDI count is resulting in sleep fragmentation and that CPAP therapy would be beneficial. He agreed to write me a prescription for a CPAP machine but once again emphasized that I would most likely have to pay for this out of pocket. It is interesting that in the entire conversation he never used the term upper airway resistance syndrome (UARS) although I firmly believe that is what I have based on the sleep study numbers (if anyone would like to see more of my numbers I am happy to share).

I did some searching on the net and contacted a local DME. It turns out the DME had the best price by far and this afternoon I have an appointment to pick up my new machine (ResMed S9 Escape Auto) and get started on this journey back to normality. The DME called me last evening and said that they went ahead and attempted to push this through insurance anyway. The person they spoke with at my insurance indicated that there may be a slight chance that this is covered, but I am not overly optimistic based on what I have read.

I would like to hear from others, especially those struggling with high RERAs. From what I understand the Auto machine may be beneficial since folks with UARS may have a low tolerance for consistent high pressure? I am a newbie, so I really don't know what to expect with the whole APAP thing.

I appreciate this forum, especially the posts on folks who have shared success stories. I guess that is what is on my mind now...i.e. how long till I see some effects. Based on what you all have told me already it can be a longish, trying process, but the way I feel right now, I would strap a flaming coal to my head if it would make me normal again!

[LSAT]

I don't have time ti review your entire post...BUT...Don't accept the S9 ESCAPE AUTO.....ONLY ACCEPT THE S9 AUTOSET or ELITE. You will get better detailed data with the latter. Also...Before you go, check the prices on line at our host...cpap.com.

[Pugsy]

Read this link
http://maskarrayed.wordpress.com/

I second what LSAT said...you do NOT want the S9 Escape Auto.
While it does have APAP mode and will show you AHI and average pressure and hours used...it shows nothing else..zip, nada..not even leaks. Nothing that will help you evaluate your pressure needs.
We already know your AHI is going to be low. You need something that will measure Flow limitations and leaks.
Flow limitations are likely going to be an important measurement tool for you with your history.

I would suggest the S9 AutoSet...more flexibility with the machine being able to do both cpap and apap mode.
If that DME wants to jack you around with the price...consider secondwindcpap.com ...They have new zero hour open box specials.
S9 Auto set with humidifier and both hoses $879.
They also have slightly used low hour machines for less if you aren't opposed to gently used.
They are a good source for discounted machines.
http://www.secondwindcpap.com/Open_Box.html

Or check out cpap.com for their prices for new in box...cpap.com is our forum host...they pay the bills for this forum and their prices are right in line with anyone else for new in box items. ResMed has a set price that online sellers have to adhere to for new in box equipment.

[NotLazyJustTired]

Thanks guys for that quick advice. I will bring up the AutoSet with my DME this afternoon. Since I will likely be paying this out of pocket they will most likely comply or I will walk. They are quoting me $727 for S9, humidifier and mask and I haven't found that sort of deal anywhere even for an Escape Auto.

BTW, I agree that flow limitation data will be vastly important to me. I didn't realize these machines even captured that data. Great!

[chunkyfrog]

You might be able to get an Autoset from secondwindcpap.com.
You really, really, will need the data.

[Pugsy]

See this thread for a few examples of Flow limitation graphs
viewtopic.php?f=1&t=87328&p=796793&hili ... ph#p796793

The machines actually gather a lot more data than the flow limitations.
Check out the SleepyHead user guide in my signature line for some examples.
Or the ResScan tutorial
http://montfordhouse.com/cpap/resscan_tutorial/

For dollar comparisons....see what that DME wants to charge for the S9 AutoSet....CPAP.com gets not quite $1100 for theirs..that's machine/humidifier/ travel case/climate line hose/ SD card.
https://www.cpap.com/customize.php?PNum=3151&PAID=0

[NotLazyJustTired]

Good news! The lady I spoke with was misinformed. As it turns out my sleep doc always prescribes the AutoSet and that is the machine I got! I took a nap with it when I got home. I had to turn the humidifier off since I didn't have any distilled water. It was one of the best naps I've had in a good while. I am using the Swift FX nasal pillows and so far so good. I am actually looking forward to this evening. I am definitely going to need to get the ResScan and/or SleepyHead software. I am a propeller head anyway so this analytical stuff appeals to me. Thanks again for the swift advice.

[jdm2857]

I'd mention that I use tap water (high-quality public water supply) in my humidifier without problems, but that would stir up a hornet's nest.

So I won't.

[cosmo]

Congrats on the machine.

If you were to use tap water, make sure to pre-boil and let it cool down first. Too many parasites and little buggers out there. Look at that water tank girl they found in that seedy motel...Walmart distilled water is only 88 cents. 2 bottles will last 1 month. I hoarded 5 bottles the last time I was there. I couldn't reach the rest It will also come in handy as drinking water for any disasters. I avoid walmart at all cost but they have the cheapest price on motor oil so I only go there for that.

[LSAT]

Congrats on the machine.

If you were to use tap water, make sure to pre-boil and let it cool down first. Too many parasites and little buggers out there. Look at that water tank girl they found in that seedy motel...Walmart distilled water is only 88 cents. 2 bottles will last 1 month. I hoarded 5 bottles the last time I was there. I couldn't reach the rest It will also come in handy as drinking water for any disasters. I avoid walmart at all cost but they have the cheapest price on motor oil so I only go there for that.

You fry your food in motor oil and drink distilled water....no wonder you look so pale!

[Pugsy]

Make sure that you go into the Clinical setup menu and check to see if Sleep Quality is set to ON.
Default from the factory is for "Usage" and that means only hours of use.
For the detailed data you need Sleep Quality set to "On".

If you don't have the clinical manual that tells you how to get to the clinical setup menu..
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf

[cosmo]

You fry your food in motor oil and drink distilled water....no wonder you look so pale!

I don't know about cooking in motor oil but you can use it on hair*.




I'll drink distilled water if I have to. You won't see me in one of these lines if another big one hits Frisco.



Use at your own risk. Cosmo takes no responsibilities for any and all hospitalizations.

[NotLazyJustTired]

Make sure that you go into the Clinical setup menu and check to see if Sleep Quality is set to ON.
Default from the factory is for "Usage" and that means only hours of use.
For the detailed data you need Sleep Quality set to "On".

If you don't have the clinical manual that tells you how to get to the clinical setup menu..
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf

Thanks Pugsy. Yeah, I have the manual and did notice yesterday that Sleep Quality was set to ON. It is against my general nature, but I am going to resist looking at the data until I get used to the mask and can wear it for at least 4 hours a night. I think then the numbers will be more meaningful. I may be back with questions about the software later, but for now my priority will be adapting to this new way of sleeping.

[archangle]

Congrats on the machine.

If you were to use tap water, make sure to pre-boil and let it cool down first. Too many parasites and little buggers out there. Look at that water tank girl they found in that seedy motel...Walmart distilled water is only 88 cents. 2 bottles will last 1 month. I hoarded 5 bottles the last time I was there. I couldn't reach the rest It will also come in handy as drinking water for any disasters. I avoid walmart at all cost but they have the cheapest price on motor oil so I only go there for that.

There's absolutely no need to preboil your tap water if its safe to drink. Drinking it would kill you a lot quicker than using it in a CPAP machine. In most parts of the world, including much of Europe and Australia, distilled water is not easy to obtain and CPAPers use tap water with no problems.

If you use tap water, you'll need to dump the water every morning and refill at night or it may get nasty smelling. It will also build up minerals in your tank more quickly. Most of us use distilled water and don't dump it every morning.

[StuUnderPressure]

You can also just use tap water for a few days until you find some distilled water.