Not Happy Newbie!

[Janknitz]

If your machine has EFFICACY data we can help you look at it and might be able to see what's going on. So please look for the MODEL number.

I became very anemic after prolonged bleeding and felt like dirt. I had terrible headaches every day and felt like a wrung out dishcloth. It took about 4 months of iron supplements to feel better. So that may very well be the issue. But data on your CPAP will help us see whether your settings are contributing to the fatigue.

However, if they stuck you with a brick (see my blogpost "Help, I'm stuck with a Brick") you need to tear the prescribing doctor a new one. How does he/she expect to evaluate the efficacy of CPAP treatment without data??? They are just placating you to get you to shut up and go away.

I second the question as to what is the underlying cause of the anemia??? You need to push on that. Are you taking NSAIDs for pain? Then they MUST rule out GI bleeding.

[Julie]

I would definitely look to a vegan diet being responsible for low ferritin and if you're no longer on it, or if you are, have your levels checked again. You can really feel like crap if it's low - when I was a teenager I routinely had to take iron pills after my period or just wiped out.

[LibbyLou]

I'm looking for a 3 digit number like this if your machine has one:



The number you gave didn't give me much information. It's the label on the bottom of the blower, not the humidifier. Do take out the water tank first, so you don't spill water into the unit.

Does your unit have an 8-segment display like this:

Sorry about that! It's like that one. On the bottom it says REF 220P.

Do I have a brick?!

[LibbyLou]

I would definitely look to a vegan diet being responsible for low ferritin and if you're no longer on it, or if you are, have your levels checked again. You can really feel like crap if it's low - when I was a teenager I routinely had to take iron pills after my period or just wiped out.

I quit the vegan diet around the time I started having all these issues, around September of 2013. I do also tend to have very heavy periods (at least the first few days).

If your machine has EFFICACY data we can help you look at it and might be able to see what's going on. So please look for the MODEL number.

I became very anemic after prolonged bleeding and felt like dirt. I had terrible headaches every day and felt like a wrung out dishcloth. It took about 4 months of iron supplements to feel better. So that may very well be the issue. But data on your CPAP will help us see whether your settings are contributing to the fatigue.

However, if they stuck you with a brick (see my blogpost "Help, I'm stuck with a Brick") you need to tear the prescribing doctor a new one. How does he/she expect to evaluate the efficacy of CPAP treatment without data??? They are just placating you to get you to shut up and go away.

I second the question as to what is the underlying cause of the anemia??? You need to push on that. Are you taking NSAIDs for pain? Then they MUST rule out GI bleeding.

I try not to take a lot of any meds, honestly. I only take ibuprofen if I absolutely have to. I'll have to check out that brick post - as of right now, I have no idea what that means! All I know is that when I picked up the machine, he took the memory card out and put the modem on.

[Pugsy]

Yep...you have a brick
https://www.cpap.com/productpage/pr-sys ... chine.html
See where it says "entry level"...that means bare bones basic machine.
You have the wrong humidifier chosen...the correct choice would be PR System One 60 Series Heated Tube Humidifier with heated tube (even if you aren't using the optional heated hose).
The only data your machine collects is how many hours you use it each night. That's it. No way to have any idea if your therapy is even effective or not.

[LibbyLou]

Yep...you have a brick
https://www.cpap.com/productpage/pr-sys ... chine.html
See where it says "entry level"...that means bare bones basic machine.
You have the wrong humidifier chosen...the correct choice would be PR System One 60 Series Heated Tube Humidifier with heated tube (even if you aren't using the optional heated hose).
The only data your machine collects is how many hours you use it each night. That's it. No way to have any idea if your therapy is even effective or not.

Ah great, a brick.

So, about a week after I got it, I called to talk to the RT about possibly trying a chin strap when my mouth was opening a lot, and he said that yeah, he saw some interruptions or something in my info, and was wondering if that's what was happening. How would he see that? When they use a modem to track my usage, does it show different info than I could get just by getting the info from the memory card?

[Pugsy]

No, the modem cannot send something that the machine doesn't gather.
He lied to you. I would be throwing a hissy fit at being lied to and potentially putting your health and therapy at risk.
The only thing that can ever be obtained from the machine via modem or SD card is hours of use.

[LibbyLou]

Well that's nice to know! Argh. This is all getting to be SO annoying and frustrating. I'm not even sure where to go from here. Keep on trying to use it and see what happens, or go back in there and throw a fit, or what?!

(I laugh, but seriously, it's getting old. I have to laugh, or lose it totally.)

[Pugsy]

I would be throwing a fit and the fact that you were flat out lied to actually gives you some leverage.
All they need to do is swap the machine for a 460 or preferably the 560 model (they will both work with your existing humidifier). I would be playing the "I was lied to" card big time.....like how in the heck do I even know if leaks were an issue or not and leaks can seriously impact therapy and you have zero way to even verify if leaks are an issue or not.
And the reason I mention leaks as a target point is that any machine that gathers leak data will also gather the other efficacy data.

[Pugsy]

Would you take insulin for diabetes without ever checking your blood sugar?

[LibbyLou]

Now I'm trying to remember which machine I used for the auto titration, because he definitely told me he saw no leaks during that week, and that "all my events were taken care of at a pressure of 6.5 at the highest". I'm assuming that one HAD to have supplied data though, in order for the pulmonary doctor to write an Rx for the one I have now.

[LibbyLou]

Would you take insulin for diabetes without ever checking your blood sugar?

No I would not, good point!

[Pugsy]

It's up to you just how much you want to push for a full efficacy data machine but if you start feeling crappy and wonder if your therapy is optimal there is no way to verify anything.
You may not feel the need now but something might happen later that makes you wonder how effective your therapy is and there's nothing to evaluate.

And about leaks... I am here to tell you that we can sleep through some pretty massive leaks and not have a clue.
Been there and done that myself. In my case it was my headgear that was too stretched out and causing my nasal pillows to slide around all over the place. Nearly 40% of the night spent in really, really big leak and I slept right through it all.

[LibbyLou]

I just don't know what to do. I'm still skeptical of even needing a CPAP, although that could also just be because I hate it.

So, are there others here with only RERAs who have seen improvement with CPAP over other therapies, treatments, etc.?

[Pugsy]

People with just mainly RERAs seem to have a harder time in terms of achieving the desired positive results that they read about from cpap users with plain OSA. I don't know if you have UARS or not but if you do the cpap/apap machine is still considered the first line of therapy. It's just harder to evaluate effectiveness because the AHI is usually not all that remarkable to start with and AHI is one of the first things we OSA people use to evaluate therapy.

The model 460 and 560 PR S1 60 series machines...did you know that they actually flag RERAs? So it would at least give you some sort of idea as to how your sleep is going.
And if you could get the model 560 machine in addition to RERAs it will also flag flow limitations as events when you use the auto adjusting (apap) pressure mode and apap mode is only available on the 560.

I assume that since you have read up on UARS you know that flow limitations can be perhaps a more important data point for evaluation.

In all honesty if I were in your shoes and knowing what I know about these various machines...I would want at least the PR S1 model 560 machine and at best I would want the new ResMed AirSense 10 AutoSet for Her model because it has a special apap mode that may better address the potential UARS and the RERA issues (it also flags RERAs).
There's no guarantee that these machines or having that data available will fix your problems but I think that they at least give you a chance and also allow you to monitor the therapy so you can correlate the therapy with how you feel.

You would probably stand a better chance of swapping the 220 model for a 460/560 than getting the new ResMed model. The longer you keep the 220 the harder it will be to get the DME to swap it out...if they even will swap it out. You do have options though...you can continue to use this machine and see if it helps. If it resolves your issues and you feel great and sleep great then maybe all this other stuff won't matter anyway.
If it doesn't and you later want to try one of the other machines there's always the option of purchasing a machine on your own and out of pocket as long as your pocketbook permits that expense. There are some fairly low cost machines like these above available if you know where to look. So if you want to wait...you can...just so you know what your options are.