Day 0 questions from a total newbie

[cathyf]

First off, my apologies for starting this as a new thread -- I've been searching the threads for a couple of weeks now and everything seems too "advanced" for me -- using abbreviations and comments that make it obvious that I don't know squat about what's going on. I know everyone has probably already answered all these questions a zillion times before, so maybe you could just point me at some previous answers?

In May I used an ApneaLink for a screen, which got me a sleep study in July. The results from the screen were an AHI of 8 with a lowest desaturation of 79%. BUT, the ApneaLink breaks out the desats:
#desaturations: 100

• 89% < sat ≦ 90% -- 12min
  88% < sat ≦ 89% -- 3min
  85% < sat ≦ 88% -- 2min
  80% < sat ≦ 85% -- 1min
  79% < sat ≦ 80% -- less than 30 seconds...

So, yes, the lowest saturation is a scary 79%, but that was a pretty brief dip, and 2/3 of the under-90! time was only down to 89.

In the full sleep study, the final interpretation is "The findings indicate moderately severe obstructive sleep apnea with associated hypoxemia and sleep disruption (minimum SpO2 80%)."

There are a bunch of things which I find kind of surprising in the study. This started out as a question of narcolepsy, because my dad sleeps at all sorts of inappropriate times (at the dinner table, in the middle of social events), and also because I dream pretty much constantly when I sleep -- if I fall asleep at my desk for a minute or two is when I have pretty strange dreams. But the sleep study pretty much clears up the narcolepsy worry.
Total Recording Time: 462 min
Total Sleep Time: 357 min
Sleep Latency: 40.5 min
REM Latency: 116 min
Sleep Efficiency: 84.7%
Wake After Sleep Onset: 64 min

% of Total Recording Time (% of Total Sleep Time)
Wake Time: 22.7% (0%)
N1: 1.4% (1.8%)
N2: 52.2% (67.5%)
N3: 9.8% (12.7%)
REM: 13.9% (18.0%)

That looks like I dream outside of REM sleep, and that if anything I'm a little low on total REM sleep and a little slow getting there. The N3 looks like it's about 2/3 what it's supposed to be, which could explain why I wake up feeling like I was running a marathon while I was sleeping and got hit by a bus at the finish line.

The report also says that my snoring is "FREQUENT MODERATE TO LOUD" which surprises my husband, since he says I normally don't snore. EKG showed my heart rate was 85/102/73 while awake and 79/91/71 while asleep (Avg/Max/Min). My whole life I have had a fast resting heart rate combined with low blood pressure, but in the last year my blood pressure has gone up to normal and I've started on a low dose of beta blocker that has nudged it down. So, yeah, it's high, but lower than it was! The "EEG & Sleep Analysis:" was "Sleep was moderately fragmented" Leg movement analysis: "PLMS INDEX 6.7"

So now to the breathing...

Total events: 91
AHI: 15
AHI during REM: 45
AHI during NREM: 9

Hypopneas -- NREM: 34, REM: 43
Obstructive Apneas -- NREM: 9, REM: 5
No Central or Mixed Apneas

Position: #Events/AHI
Prone: 0/0, Supine: 23/19, Side: 68/14

One other piece of data -- I have Hashimoto's and an enlarged thyroid. When I lie on my left side (right lobe of thyroid -- the larger one -- is on top), I occasionally hear a little "squeak" or short whistle at the very end of a breath.

So, now to my questions... My PA has ordered a CPAP machine for me, but I haven't seen the prescription, so I don't know exactly what she has ordered. I have talked to two DME's in the town that I work in that are in network. One says that they carry Respironics machines, while the other says both Respironics and ResMed. The 2nd DME told me that their ResMed machines are "S9 VPAP Adapt". The machines come in a overwhelming array of features and price points. From reading here, the message I get is that I need a machine that is fully data capable and in a form that I can read the data, but on the other hand my results show no sign of central apneas and moderately severe obstructive apnea so I don't need necessarily a "Cadillac" machine that someone else might need. One "blunt force" way to tell the difference between machines is to look them up in the cpap.com catalog and any machine which is too cheap I'm assuming is, well, cheap. But even that's pretty approximate -- my nightmare is to end up with a machine that's expensive because it has features on it that I don't need, while still not having the features that I do need. Because I don't know what I need!

Next question: When I go to the DME and pick up the machine, are they going to show me how to use it? Give me a brochure? Send me to a website? I know I sleep with my mouth open, and that they make masks for that -- is the DME supposed to provide the expertise to tell me what mask to use and to fit it to my face and to teach me how to get it on right? If not them, then who is supposed to teach me these things?

What about pillows? This morning I noticed that when I sleep it's on my side, but my face is turned a bit down, so the whole side of my cheek is against the pillow. Anybody else have this problem and know how to solve it?

Thanks in advance for any tips, pointers, information, etc. This is all really overwhelming -- I started out thinking that I might have narcolepsy, and the ApneaLink screening was free so I took it, and was totally not expecting to show up with apnea/hypopnea.

[englandsf]

What does your prescription say?

Your DME should teach you the basics but don't expect too much, you'll almost certainly get more help here in my experience. Try to get Auto (APAP) machines from either PR or ResMed - that are all good machines. The S9 or A10 from ResMed, I think the 60 Auto from PR.

The key issue is mask type and model - mouth breathers usually try full face masks first - but that may not be your only option if you can learn to sleep with your mouth shut you can use much simpler, lighter less invasive nasal pillows. I was one of those who did and love my P10 now.

[palerider]

First off, my apologies for starting this as a new thread

better to start your own than hijack someone elses

So, now to my questions... my nightmare is to end up with a machine that's expensive because it has features on it that I don't need, while still not having the features that I do need. Because I don't know what I need!

Next question: When I go to the DME and pick up the machine, are they going to show me how to use it? Give me a brochure? Send me to a website? I know I sleep with my mouth open, and that they make masks for that -- is the DME supposed to provide the expertise to tell me what mask to use and to fit it to my face and to teach me how to get it on right? If not them, then who is supposed to teach me these things?

avoid anything from respironics that says "plus" or "se" or has a model/REF number that is less than 460. avoid anything from resmed that has the word "escape" near the power button, no matter what else is says. (escape from the escape, and the plus is a minus).

the amount of tutoring that DMEs give varies widly from telling you everything to shoving the box in your hand, snatching your check and yelling "NEXT!"

[englandsf]

I should have said - find out WHAT your prescription says and match it to the suggestions you get here machine wise. I missed your point about not seeing your RX.

[ChicagoGranny]

Prone: 0/0, Supine: 23/19, Side: 68/14

Do you know how many minutes you slept in each sleep stage while in the prone position? It should be on your sleep study summary.

And about the machine, yes you need a machine that treats the garden variety obstructive sleep apnea (which is what about 90% of people have) and that machine needs to be efficacy-data-capable. Someone should help you with model numbers.

Personally, the only ones that I would accept are,

https://www.cpap.com/productpage/resmed ... chine.html

https://www.cpap.com/productpage/resmed ... idair.html

Those are ResMed machines and I will let someone else tell you about Philips Respironics machines.

Before you accept delivery of a machine, you need to make absolutely sure it is an acceptable model. Be willing to refuse delivery if you are not absolutely sure it is an acceptable model.

[cathyf]

Prone: 0/0, Supine: 23/19, Side: 68/14

Do you know how many minutes you slept in each sleep stage while in the prone position? It should be on your sleep study summary.

Unfortunately the only output I have from the sleep study is a one-page summary. As far as position, it shows only the number of events and the AHI for prone, supine and side. I'm just assuming that zero events while prone is because I spent no time prone -- in my weight class, I can't really lie on my stomach when awake, and don't think that I'm getting there while asleep! On the other hand, as I put on a different thread, I was utterly shocked that the study had me Supine at all. This is the first hint that I have ever -- in 51 years -- been asleep on my back. My husband says that he has never seen me asleep on my back in 24 years of marriage. If I read the report correctly, I had 23 events and an AHI of 19, which would mean I spent about an hour-and-a-quarter asleep on my back during the study.

What would really be interesting to me is the number of events on my left side vs right side. I have a fairly significant goiter (my thyroid is about double the size it should be), and I noticed a couple of months ago that every so often when I am awake and lying on my side I have this little squeak or short whistle at the very end of a breath. I think that I have figured out that it only happens when I'm on my left side, which would put my right thyroid on top. (My right thryroid is significantly bigger than left.) I would be impressed if the software keeps track of which side you are on -- has anybody ever seen that output?

And about the machine, yes you need a machine that treats the garden variety obstructive sleep apnea (which is what about 90% of people have) and that machine needs to be efficacy-data-capable. Someone should help you with model numbers.

Personally, the only ones that I would accept are,

https://www.cpap.com/productpage/resmed ... chine.html

https://www.cpap.com/productpage/resmed ... idair.html

Those are ResMed machines and I will let someone else tell you about Philips Respironics machines.

Before you accept delivery of a machine, you need to make absolutely sure it is an acceptable model. Be willing to refuse delivery if you are not absolutely sure it is an acceptable model.

The one DME that I talked to that gave me specific information about the machine that they have told me that it's an S9 VPAP Adapt. According to the resmed description,

The S9 VPAP™ Adapt is an adaptive servo-ventilator (ASV) specifically designed to treat central sleep apnea (CSA) in all its forms, including mixed sleep apnea, complex sleep apnea and periodic breathing such as Cheyne–Stokes respiration (CSR). The device continuously monitors and adapts to the patient’s breathing pattern throughout the night to ensure they’re receiving the right pressure at the right time.

Which is what has me worried... The two machines that you linked to as being fine run in the $700-$900 range on cpap.com, while the S9 VPAP™ Adapt I found at sleepdirect.com for $3,300. That price difference is definitely YIKES! I have no sign of CSA, CSR and all that other exotic stuff, and this sounds like TOTAL overkill for my needs!

[Pugsy]

I would be impressed if the software keeps track of which side you are on -- has anybody ever seen that output?

Not with these xpap machines or their software but there are apps you can get and/or devices that can appoximate sleeping position.
I am not personally familiar with them and at the moment I can't think of one by name to tell you what to look for but they are out there and not horribly expensive.

The S9 Adapt is a very special machine. It would require more than a general cpap prescription. It's not something that a DME would normally provide unless the RX called for it. Insurance won't normally pay for it unless specific documentation as to need is provided.

You only had the ApneaLink study...that's a home study isn't it? And haven't had a sleep study in a lab? If so....it's hard to come up with documented need for the Adapt from a home study with the results you seem to have.

Now they might be thinking the regular S9 VPAP bilevel pressure machine but even then it normally isn't a first line machine given to someone who hasn't even had a titration sleep study to figure out what pressures are needed.
Normally one of the machines that CG showed you are the first line of machines..not those high end machines unless something shows up on the sleep study or pressures higher than 20 cm are needed.

I would be scratching my head as to why the mention of the Adapt too...it doesn't make sense with what you have said so far unless they have some information that you don't. I would be talking with them to clarify things.
A DME that only provides the Adapt...highly unusual because they cost so much and insurance won't pay for them unless specific criteria are met.

[ChicagoGranny]

the S9 VPAP™ Adapt

Believing what you said about your diagnosis, it would be an unusual surprise if a VPAP were prescribed.

It would be good to nail down the exact model in advance of expected delivery. Then you can come here and discuss it with Pugsy and others before you take delivery.

[cathyf]

You only had the ApneaLink study...that's a home study isn't it? And haven't had a sleep study in a lab? If so....it's hard to come up with documented need for the Adapt from a home study with the results you seem to have.

I did the ApneaLink in May, and then a sleep study in a sleep lab at the end of July. The only documentation I have is the 3/4-page ApneaLink output and the 1-page summary from the sleep lab study -- and those are obviously pretty light on information. I haven't seen the prescription, either. Nobody that I am dealing with is really covering themselves in glory in the competence department throughout this whole thing! There was the 6-week delay getting into the sleep study because they lost my file after the ApneaLink. Then they told me they would have the results back from the sleep study in 2 weeks, and it was 4. Then I called my insurance company to find out which DME was in network, and they told me Lincare. The doctor faxed the prescription to Lincare and then *nothing*. I called Lincare, and they said, no, sorry, we know that CIGNA keeps telling patients that we are in their network, but we aren't. Then I called CIGNA back, and they said that there is one other DME in the big town near where I live. I finally got through to that phone number, and it's not the name that CIGNA gave me and it's not even an equipment company -- it's a 3rd party administrator for companies that self-insure! When I looked up the NAME that they gave me, it's on the other side of the country, and doesn't have cpaps either! So I got names of 3 DMEs in a different town (where I work) and I started calling them on Tuesday. At one of them the girl who answered the phone told me "ResMed S9 VPAP Adapt" -- and this might have been somebody who knows nothing about it who was just reading the box on the shelf... OK, rant over, I'm not going to let this drive me any crazier than I already am!

I've done the ApneaLink, and I've done the in-lab study, but other than that I've got no idea what is happening. I don't think I've ever been in the same room with a cpap machine of any variety, and the only thing I know about any of this is what I'm learning here. I'm really grateful to everyone here who has so much information! And thanks to everyone who has responded...

[Pugsy]

So I got names of 3 DMEs in a different town (where I work) and I started calling them on Tuesday. At one of them the girl who answered the phone told me "ResMed S9 VPAP Adapt" -- and this might have been somebody who knows nothing about it who was just reading the box on the shelf..

Gottcha. I imagine that the girl just read off of a box on the shelf. Most likely that DME normally dispenses ResMed S9 machines and the Adapt was just sitting there and the girl didn't know the difference. I bet there are other ResMed models available at that DME.

If you go with the ResMed S9...avoid anything with Escape in the model name...they aren't full data despite there being a SD card in the slot. There is a S9 Escape Auto and it gives one tiny data point..generic AHI and that's it..no leak data, no event category distinction plus it uses an older less desirable algorithm anyway.

If you go with the brand new ResMed AirSense machine.....get the AirSense 10 AutoSet for Her...it has a special algorithm for women and it's a full data machine. This has only been released a couple of weeks so not a lot of feedback yet on it but so far nothing but positive comments. If it were me...I would push for this model.
If that DME has the S9 Adapt..they can get this machine.

Unless you had a lot of centrals during the sleep lab study...you don't need the Adapt.

You really need to get your hands on a copy of the prescription though....if it's for a regular cpap/apap machine...get the Autoset if you are wanting ResMed and make them give you the latest AirSense A10 AutoSet for Her model. If they bitch about the prescription saying "cpap at a fixed pressure"...they can set the AutoSet in cpap mode and fulfill the RX requirements that way.
Insurance won't care...they pay by HCPCS billing code and not by model name or brand.

[cathyf]

Yeah, there have been no signs of any central apneas in either test -- in fact, not so many obstructive apneas, either -- I had 14 apneas and 77 hypopneas during the sleep lab test. I only had 1 apnea vs 65 hypopneas during the ApneaLink home test. (Hey, I thought it was impressive that I could desaturate to 79% with only one apnea )

What is not clear to me either is what the purpose of the machine is. My PA made it sound like they were going to get me this machine and then I was going to use it for awhile, and then I would bring in the SD card and they would decide on treatment plans from there. Well, first of all this isn't going to work if nobody has the job of showing me how to use the machine. (Just from the pictures and knowing basic physics, it's pretty obvious that it's not going to do any good if I don't put the mask on right side up, and I quite literally don't know which side is up!) It wouldn't make any sense to be buying this before having a treatment plan, right?

[Pugsy]

Actually the hyponeas can cause the desats too. Especially if they come close together or are especially long in duration.
What the sleep studies don't tell us is how long the hyponeas or apneas lasted.
During my sleep lab study I barely made diagnosis with 12 AHI but my Oxygen levels went down to 73%. They must have been massive in duration. Remember they only have to last 10 seconds and they get a name. While hyponeas typically don't have the flow reduction that the OAs get...they can still hurt us if we have enough of them and they last long enough. People have hyponeas lasting a minute or more. I have seen some 45 second hyponeas on my reports even now...they are rare and normally all by themselves but if I had 5 or 6 of those back to back it would cause a desat.
Also for me my OSA was worse in REM stage sleep...53 AHI but I didn't get enough REM during the first sleep study to evaluate fully because every time I would hit REM sleep the apnea events would kick me out of REM sleep.

So it doesn't really matter what they are called..enough of them close enough together will sure harm the body..wake us up and deprive us of sleep and cause the heart and bodily systems to go through unwanted stress.

I was going to use it for awhile, and then I would bring in the SD card and they would decide on treatment plans from there. Well, first of all this isn't going to work if nobody has the job of showing me how to use the machine. (Just from the pictures and knowing basic physics, it's pretty obvious that it's not going to do any good if I don't put the mask on right side up, and I quite literally don't know which side is up!) It wouldn't make any sense to be buying this before having a treatment plan, right?

Probably the "plan" is to see how you do and does it help with your symptoms and do the settings need adjusting. You might even have a follow up overnight pulse oximeter test to make sure the oxygen levels are stable now. DMEs do that all the time. Just a little finger tip pulse ox that records overnight and you take it back to them and they see what happened.

Good DMEs will show you how to use the machine and fit the mask and help you with mask selection but it isn't all that difficult to figure out on your own. I did it. Lots of people have. Some have even self diagnoses and self treated.
I know it all seems overwhelming at the moment but it really isn't that difficult. It won't be long before you are wondering what in the world caused you to worry so much...I promise.

Oh....there are tons of mask fitting videos out there for all the masks if you have a problem or your DME doesn't have a clue or even if they do and you just forget what they said.

[ChicagoGranny]

Nobody that I am dealing with is really covering themselves in glory in the competence department throughout this whole thing!

This is typical in heavily regulated businesses. They have to respond to the regulating authorities and licensing boards or they will be closed. These atuhorities become their "customers" and those we typically understand to be customers become annoying afterthoughts.

Become extremely annoying to get what you want.

[cathyf]

Ok, I'm feeling a little less stressed tonight. It occurred to me that the friendly medical records staff at the clinic could of course give me a copy of the prescription. Why I didn't think of asking for that when I got the sleep study report? Well, chronic sleep deprivation makes you stupider!

The prescription is for "AutoPap at 7-20 cmH2O" Which, if I understand everything that I have learned here, is an auto-adjusting cpap, with settings set at 7cm for low and 20cm for high, and with a humidifier. And the two models that CG pointed out would just the ticket.

These atuhorities become their "customers" and those we typically understand to be customers become annoying afterthoughts.

Become extremely annoying to get what you want.

I have to say that there are advantages to living in a small town. Yeah, the giant companies screw up their databases and ignore us when it comes to fixing stuff, but on the other hand everybody knows everybody else here and it's important to get along. Yesterday we had our big parade full of hokey floats and random people and vehicles along with the marching bands and politicians and horses. Including the local DME, which drove their delivery van and the staff and their kids walked the parade throwing candy to the little kids. People here do take care of each other -- you never know when the client you are helping at your business turns out to have a brother who is your kid's baseball coach or your aunt taught them in school or is the girl scout leader who knows that you are addicted to thin mints...

[ChicagoGranny]

The prescription is for "AutoPap at 7-20 cmH2O" Which, if I understand everything that I have learned here, is an auto-adjusting cpap, with settings set at 7cm for low and 20cm for high, and with a humidifier. And the two models that CG pointed out would just the ticket.

Great! Now make triple sure they don't stick you with a "brick". The model numbers/names can be very confusing.