New and Excited -- My Solipsistic Update Thread

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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The Latinist
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New and Excited -- My Solipsistic Update Thread

Post by The Latinist » Sat Apr 19, 2014 10:22 pm

I just had my sleep study on Thursday and haven't got my report back yet, but I'm excited. Three hours into my study I woke up with a headache and dry mouth and feeling like crap. The tech bustled in and said I "more than made the cut" for them to try CPAP. Fitted me with a mask and I drifted off to sleep and...wow! Despite the fact that I was wired up like a robot and repeatedly awoke from a leaky mask blowing air in my eyes, the next four hours of sleep were the best I've had in years! I dreamed (I don't remember the last time I could recall a dream). I woke up feeling refreshed and alert. I am sold. My only disappointment is that after having the best night of sleep I can remember I had to go home CPAP-less and wait for my results.

I was told that my results were being flagged priority and that my doctor would review them first thing Monday morning (he had already told me he would want to get me on CPAP as soon as possible). So I expect to have a call from him sometime Monday. Before I talk to him, I want to be ready with the questions I need to ask to make sure I get the right machine for me. So help me out: what questions do I need to ask? In particular I'm wondering if I should ask about APAP.

I know it may seem premature, but I'm also looking for device recommendations. The Resmed S9s seem popular around here. Are there any others I should consider? I'd love to hear people's top recs for both auto and standard devices.

And of course any other advice would be welcome.

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Last edited by The Latinist on Sun May 25, 2014 11:29 am, edited 8 times in total.

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Pugsy
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by Pugsy » Sun Apr 20, 2014 7:02 am

The ResMed S9 machines are very popular and so are the Respironics PR System One 60 Series machines. Both have minor pros and cons but for the most part it's a toss up. These 2 brands are the 2 main player in the cpap/apap/bipap market. They also offer the easiest to obtain and use software which is also probably the most comprehensive in terms of data collected.

APAP capable machines are a plus because they are full data machines (so people can avoid the figuring out the model difficulties) because they are like having 2 machines in one because they also have a cpap mode available in addition to the apap mode. There are situations when using APAP mode is a great benefit and there are some people who don't do well with it but it's nice to have that mode available just in case it is needed for someone is one of those people who greatly benefit from auto adjusting pressures. Better to have something and not need it than need it and not have it.

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Julie
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by Julie » Sun Apr 20, 2014 7:41 am

Read the following as well from Janknitz -

http://maskarrayed.wordpress.com/
http://maskarrayed.wordpress.com/what-y ... me-part-i/

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The Latinist
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by The Latinist » Sun Apr 20, 2014 11:25 am

Julie wrote:Read the following as well from Janknitz -

http://maskarrayed.wordpress.com/
http://maskarrayed.wordpress.com/what-y ... me-part-i/
Thank you for these links, they're exactly what I was looking for. From reading the forums it was obvious that not all machines are created equal and that there are really only two that I really want. My question was how to make sure I got one if those machines.

Do I understand correctly that it is usually not necessary to have APAP or data capability specified on the prescription, but that it helps? So when I talk to my pulmonologist it might be a good idea to specify user-accessible efficacy data and APAP capability so I don't have to argue with my DME about it?

I have private insurance (Anthem BCBS) with sadly only 50% coverage for DME. I guess I'll have to contact them and find out just how the coverage works. Is there anything in particular I should ask them?

Thanks a lot for your help. Maybe someday I'll be able to pay it forward.

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StuUnderPressure
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by StuUnderPressure » Sun Apr 20, 2014 11:44 am

The Latinist wrote:
Do I understand correctly that it is usually not necessary to have APAP or data capability specified on the prescription, but that it helps? So when I talk to my pulmonologist it might be a good idea to specify user-accessible efficacy data and APAP capability so I don't have to argue with my DME about it?


"MY" opinion is that you should pick which machine you want.

Then, have the Rx written so that there is NO wiggle room for the DME & they have to provide you that machine.

i.e. ResMed S9 AutoSet Pressure Range X - XX

Also, keep in mind that most DMEs primarily sell only 1 brand.

If you want a ResMed, don't go to a DME that primarily sells Respironics.
If you want a Respironics, don't go to a DME that primarily sells ResMed.

Yes, any DME can order a different brand for you.
But, if they buy few units of that brand, their cost will be much higher & they will be less willing to provide it to you. Most will just flat out refuse to do it.

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purple
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by purple » Sun Apr 20, 2014 12:13 pm

Never move a machine with water in it.

I say when dealing with Docs and DME's to be as wise as serpent and innocent as Doves. That is, one should try not to be confrontational and see how the doc/DME act before pointing out some machines (non-data) are not as likely to be helpful to you as others, and so on. I have never had anything but great DMEs and really good, caring docs.

Others are here on the forum because they had to learn how to treat themselves or die. Meaning they had to fight through either bad docs, or poor DME's. BTW, we are mostly down on chain DME's, like crap-Apria, (although some have had great experiences with Apria) because of they tend to have overworked, not very competent employees. But somehow, people do get better with some poor docs and iffy DME's. Personally I use Lincare (a chain) and they have been wonderful, glad I did not make them angry from the get go by being confrontational.

If you are not hurting for money. One of the things which helped me is having a hose hanger. Which frankly you can make by tying the hose to your head board in some way. This keeps one from turning over and pulling the machine (with water in it) onto the floor. My hose hanger I bought from our sponsor, cpap.com, (Hose Buddy) and it reduces the tension on the hose, so it helps reduce the leaks as well.

Mostly in the first days, you want to work on the leaks, the data is not valid if you have much in the way of leaks. Pugsy's posts all have links to software to read the machine.

You want, if they do not directly provide it, a heated hose. The manufacturer Resmed calls theirs a "Climate Line." I bet the DME provides it, even if the doc does not specify it. You have some insurance, and therefore, selling the hose makes them money. For me, the heated hose was much better than the heated tank, and I do not live a cold place like Minnesota (which can have dry, cold air which can come with rainouts.)

See if you can, from the very beginning get a copy of your prescription, and the titration sleep test (that is the little not more than two page summary of the sleep test). You want to keep a copy of these in your xPAP bag when you travel. Some have traveled and found some part missing, broken. Getting those those supplies in a strange town is made much easier by having those documents. Else you are trying to get your sleep docs office on the phone, to get a copy of the script FAXed to your hotels machine, and then take it to a local DME. Perhaps send a copy of your script to our sponsor cpap.com, to have on file. So you, in the US, are only, some money, and an overnite shipment from sleeping joy. Also having a copy of the script makes changing DME's much more direct.

If one has simple unobstructive Sleep Apnea, some people can get good sleep by sleeping sitting up (but not on their back as in a Lazy Boy recliner), like if the power is out, or perhaps waiting for the docs office to read the sleep test (it is a difficult task to read an entire sleep test. It can not be done by a computer, a human being must do it in like segments of I think thirty second intervals, so it takes several hours to score one sleep test.)

Then your prescription must be sent to the DME (either the one you choose, or the one your insurance mandates) Then they will mess around several days getting paperwork from your insurance company and finding the correct machine model, putting you on their RT's schedule.

If your insurance allows you to choose your DME. Often the Sleep docs have a list of local DME's and how they are rated by patients.

Never move a machine with water in it.

Have a good trip into the land of Nod.

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sleepyb
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by sleepyb » Sun Apr 20, 2014 2:30 pm

Good luck with it. I still remember the feeling leaving the sleep study more awake and alive then i felt in years. Don't be surprised though if when you get your machine you don't get that wonderful feeling right away. There will be leaks, rainout, and all sorts of annoying issues to work through, plus the sleep debt, but it is definately worth it!
You may be lucky with the time between sleep study and equipment. My nurse like yours said she would expedite the results, that was Sunday morning after the test, and by Monday afternoon I had machine and mask. Often it doesn't work that fast, but I think when the nurse is concerned they have ways to get your study to the top of the list.

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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by OboeVet » Sun Apr 20, 2014 5:16 pm

I was fortunate to be provided with a fine machine because I had no idea what a myriad of options there are. Even with close. & caring hands-on DME (Sleep Data, San Diego) and 3 timely visits with real sleep doc MD, it took five (5) masks over six (6) months to get the right fit.

Don't give up, read all you can and be nicely self-protective. Condolences with Anthem BC. I deal with them on everything other than OSA.

Don

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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by sleeplessinaz » Sun Apr 20, 2014 5:38 pm

Ditto what Pugsy said!

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The Latinist
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by The Latinist » Sun Apr 20, 2014 7:57 pm

Thanks, guys. I'm so glad I found this place before purchasing so I won't be going in blind and end up with a brick. My current plan is to choose the APAP setup I want, price it out online, find a DME that carries that line, and ask my pulmonologist to write a scrip for that specific model. I'll then price the same setup at the DME with insurance and go with the less-expensive option. Actually, if the cost of buying online is only marginally higher, I might go that route to avoid the hassle and expense of proving compliance.

So I guess my next step is to choose exactly which machine I want. The question then becomes: ResMed S9 Auto or PR Series 60 Auto? Pugsy says they're basically a tossup, and my research shows they share pretty much the same feature set (although the S9's display seems better). I tried looking for a thread discussing the minor differences between the two, but came up empty. I'd love to hear from people who were in the same position why they chose one over the other.

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Julie
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by Julie » Sun Apr 20, 2014 8:11 pm

I ordered and tried the PR S1 a couple of yrs ago and thought all was ok for a week or two, then out of the blue with no reason I could think of, I put it on one night and it began putting out small air puffs at me immediately... very odd and uncomfortable. I couldn't make it stop and had not touched the machine since the previous night (was still wide awake and literally had just put it on), so I exchanged it for what I use now. I understand the S9 also has some feature that does a similar thing though don't know why (tho' I believe there's some reason) it happens and it may not be a bad thing for some, there may be a good reason for it, but I didn't like it and I'm happy with what I have now.

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Pugsy
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by Pugsy » Sun Apr 20, 2014 8:24 pm

Most people don't get a brand choice and most people don't get a chance to actually use both brands. So they tell you about the machine they use.

Robysue wrote a really detailed comparison a while back so no sense in me duplicating it.
viewtopic/t94287/viewtopic.php?f=1&t=82 ... AP#p866535

If your pressure needs are in the teens I normally suggest that people go with the ResMed S9 if they can. I think that EPR is a potential plus in terms of exhale relief in how it goes about its relief. Respironics exhale relief is still good but at the higher pressure needs I personally think that EPR has the potential to feel a little better.

Respironics new 60 series heated hose feature pretty much really evens out the playing field in terms of humidity delivery and rain out control.

Respironics machines store a lot more detailed data on their internal storage so you don't lose much if you don't have the SD card in the machine (gets left in computer)....the S9 doesn't store any detailed data on the machine as it only stores some summary usage AHI and hours of use and overall leak and pressure numbers.
Yes, the S9 offers more information on the display but to be honest, if you use the software you probably won't bother with the LCD information. That's a personal choice really.

I prefer the way Respironics shows flow limitations, snores over the S9 myself and it will score RERAs and the S9 won't. Now how important that might be...probably not a deal breaker for sure.

Each brand has features I like and don't really care for. None are deal breakers or makers though.

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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by Bama Rambler » Mon Apr 21, 2014 7:04 am

You have gotten really good advice above and all I can add is that I'd call a few local DME's and see what brand they carry and then have the prescription written for the "Auto" machine in that brand (unless you're diagnosed needing a bi-level or ASV). That accomplishes a few things. 1) It gives you an idea of which brand is popular in your area. 2) It lets you interact with the DME's so you get a sense of how they handle people. 3) If you buy a popular brand and something ever happens to it, the locals will be familiar with it and would possibly have unit's/accessories in stock in case of emergency.

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The Latinist
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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by The Latinist » Mon Apr 21, 2014 7:17 am

Thanks, that's what I was looking for. I had been leaning toward the S9 Auto, partly because my father-in-law has the S9 Elite (which he got from LinCare) and really likes it. But I'm not sure that I like the way the S9 Ramp works -- in particular that you can't restart without the ramp and even more importantly that it does not respond to events if you fall asleep early in your ramp. This has me leaning toward the PR 60 Series Auto, depending on what my pressure needs are. In either case, I think I'll spring for the heated hose.

I will take your advice, Bama, about calling around to the DMEs (my pulmonologist already recommended two and warned me away from one at my first appointment). And I understand that if they find I need BiPAP or ASV, then I'll need to come back here for more advice.

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Re: New and Excited -- Seeking Pre-purchase Advice?

Post by Pugsy » Mon Apr 21, 2014 7:25 am

In terms of your ramp concerns...you may not even need or want the ramp feature to be used.
It all depends on your pressure needs and how easily you adjust to the pressure. Some people never use ramp even with pressures in the double digits. Some people think a pressure of 6 is a horrible hurricane and have to use ramp for full 45 minutes.
The exhale relief available with these newer technology machines really helps ease that exhale against the pressure issue and thus often ramp isn't that much of a need so much.
Inhale is easy...it's the exhale that takes some adjusting to.

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