newly diagnosed - my story

[amyandtoby2011]

After midnight here, and later today, I'll be back at the sleep clinic. I have a mix of emotions--wanting to figure out what my pressure should be, looking forward to seeing people there and working with my tech, terror of wearing the mask, fear of waking up with a horrid case of the shakes again, curiosity of how I'll feel in the morning after CPAP.
I'm afraid of textures setting me off. I've been having better days, since Friday or so, but nighttime is still hard, and I start remembering the paste on my scalp and hor it felt.
I remember being afraid when I woke up and wanting the mask off my face. I don't want that, or the disturbing dream of wearing the thing. I'm tired of my brain freaking out on me.

I am so ready for answers, but in some ways, I'm more afraid now than I was last week.

Someone made reference on another thread to The Highly Sensitive Person. I've read parts of it, and what I've read, I really like. I'd recommend it to anyone who deals with sensory overload. It's not fun at all, and knowing that you're not alone helps and reassure me.

My next major questions, I'll list here, and then I'm not sure if I should start new topics with them, or just see if people can answer them here.

What's the difference between the auto and escape models of several brandnames out there?
I wonder which machine I'll get? EPR is only on the S8 and S9, but I'm not sure if it's on all of them or just certain ones, since there are several of each.
Will I even be able to access data, if my machine can provide is? Is the software accessible for blind users who rely on screen reader technology?
Do Medicaid/Medicare cover everything initially? I've read something about 80% of a fixed cost from Medicare, but I'm not sure about Medicaid. I'm scared of any huge financial costs on my part. I simply can't afford them without months of saving up. (fixed income and all that with it).
How do people change the pressure on their machines? I thought they came programmed set a certain way and you couldn't change them. Or maybe as a blind person I couldn't change it? A friend said she couldn't on hers, but this was years ago, so I'm not sure if it's that she couldn't access how to change it, or that her machine didn't have that capability?
Not sure if I asked this, but what defines a non-specific respiratory event? My doctor spouted off last week that I had 40 events, and 10 others that were non-specific/not specified, so 50 in all, but 50 of what? Is this the AHI people keep talking about? My sats went down to 88. I don't know how loud my snoring was-she didn't tell me anything more than what I just wrote out.

Getting a new doctor after this next meeting to finish out the study. I can't wait. I hope she's more attentive.

I forgot to call my transportation earlier today to set up my rides, and I was freaking out earlier. I was expecting to pay upwards of $40 in cab money. Thank God a couple really nice people from church are going to help out. I'm so relieved, both for not having to spend all that money, and because it'll be wonderful to see a couple familiar faces.

Are RERAs snores, or am I generalizing too much?

Please pray all goes well. I'm sure this is just pre-study jitters, but I'm not sure how much sleep I'm going to get right away. I'm going to try, though, with calming music, etc.

You guys have been a huge help, and I'm really sorry to a couple of you that I haven't replied to your PMs--I can't yet. I'm still getting prompted for captcha confirmation.

Okay, maybe time for sleep.

[Gaga58]

Amy...hoping everything goes well for you...will be thinking of you and Toby as you get through your sleep study!! Hang in there!!

[cnew]

I called the clinic yesterday, and I was contacted by them this morning. They had to go to my doctor and request the doctor change (why they would go to her and not one of the directors or someone who handles such things I don't know). She's ging to meet with me on Tuesday for the results of the study's completion, then I'll be seeing another doctor she said would be a good fit for me. We'll see how it goes, but I don't mind telling you that I find the idea of meeting with her again to be very awkward. I don't do well with conflict, and I don't know if there will be any confrontation-I sincerely hope not.

Amy, I wouldn't worry about your meeting with the doctor. It may simply be that she is afraid of dogs. Did you think about that? That said, she is obviously not a good fit for you. I doubt that she'll challenge your request for a new doctor, but if the subject comes up, all you need to say is that you and Toby are a team, and you need a doctor who can work with both of you. It's just that simple.

[Pugsy]

The S9 ResMed Escape is a limited data machine. It will only gather the number of hours you use the machine.
The S9 ResMed Escape Auto is also a limited data machine. It will gather hours of use, pressure average and AHI. Nothing else. Not even leak...Without leak data how do you know if AHI is accurate? That is why we avoid this machine.

S8 machines are older technology. Even the full data machines will require a hard to find and expensive card reader. You don't want any S8 models for this reason.

The S9 models offer a little, easy to read, SD card to gather the data and it is easily used with your computer.
If your computer has a SD slot...nothing else is needed...if it does not have SD slot an generic SD card adapter reader that will connect into USB port is all that is needed. Maybe $10 depending on where you buy it.

There is a video explaining the S9 Machine. See if you can watch it. It will answer a lot of your questions.
http://www.cpaplibrary.com/machines.html

There is a video on how to use the software.
http://montfordhouse.com/cpap/resscan_tutorial/

Software and the clinical manual can be obtained from Uncle Bob's signature line here. The clinical manual is in pdf format. It will also tell you how to get to the ultra secret clinical setup to alter settings should you wish to.
memberlist.php?mode=viewprofile&u=38643

The S9 Elite and the S9 Autoset....are both full data machines and have all the features of the newest machines and will offer EPR for you.. Anything with "Escape" in the name are limited data machines even though they also have a SD card.

[amyandtoby2011]

I tried to pull up the video on the S9 series. They seem to be in frames, and I can't access them. I clicked on something, not sure how or what, and I got this vimeo page, but it wanted me to register. Is that where the videos are, or is that something else?
Is there another way I can access the video? Otherwise I'll try to sign up.

Thanks for explaining the difference of the machines in simple words. They make each of them sound so good, but they don't give an accurate easy-to-understand explanation on the ResMed site, at least that I saw.

[Pugsy]

Machine Videos should start without need to register. I can just click on the arrow and they work for me (or as well as any video works for me with my internet connection)

I just tried it....play arrow button on the left corner. It was black screen for a little while .. 15 seconds maybe then it started. I was concerned that there was a problem. This was for the S9. Top choice. No prompt to register.

Wonder if you got stuck on the black screen?

[Pugsy]

Wonder if there is a problem with video and whatever you are using to enlarge items on screen?

This link shows how to get to clinical menu with pictures and words. Perhaps it would be easier to see.
All information is also in the clinical manual.

http://www.apneaboard.com/ResMed/ResMed ... Setup.html

I am sorry if I send you to something that you can't get large enough to view. I don't know what limitations whatever you use to enlarge items might have. So I have to treat you like normal sighted person until I know that something won't work.

We can always manually type out answers to any questions you might have after to read the clinical/provider manual.
I believe it is in pdf format so easily enlarged.

[amyandtoby2011]

I'm completely blind. What I use is a screen reader that speaks whatever comes across my screen. It can't handle a lot of flash, some PDF (pictures), unlabled graphics, pictures/images unless they are labled/described. Basically, if it's text or clearly labeled, I can access it.
On the library site, all I see are frames for the different brand names, no buttons or arrows. They are probably visual, but the screen reader isn't picking them up.
Unfortunately, enlarging text won't work for me.

I'll look at t his link you sent, Pugsy.
Thanks you guys.

[Pugsy]

Okay. Now I understand limitations. We can deal with them. Will need to either type everything out in text so your software will speak for you or get some phone help.
Do you have someone who can help you when and if you want to get into the clinical setup to change something?
Or even to change EPR? It does involve being able to see the settings on the machine.
Even changing humidifier settings will need some eyes.
Of course there is always the DME supplier but do you have someone else?
I know Toby is good but not that good. Smile.

By the way, I have a little Toby myself. Border Terrier that I rescued from the pound. He was on the short list destined for permanent sleep because no one wanted him.

Software is composed of visual reports. I don't think it will work with your speaking software. Again may need another pair of eyes to tell you what is being reported.

[amyandtoby2011]

I might be able to find a couple people to help, but none of them are very computer savvy.
I'll ask the people at the clinic tonight for ideas, re humidity etc. I might just have to memorize a set of keystrokes for the machine. I used to do that with my cell phones before I got the iPhone, which reads everything to me for once.
Might need to see about suggesting things to these CPAP companies... Hmm.
Heading out not, but i"ll report in tomorrow sometime and let you all know how it goes.

Thank you a million times over for the help. And Pugsy, your dog sounds soooo cute.

Take care.

[amyandtoby2011]

Meant to write this hours ago, and about to go to bed, but wanted to give what updates Ic ould.

I had a lot of anxiety last night, woke up several times, once taking the mask off to give myself a bit of a break from the pressure. My tech-another one since the one from last week wasn't there- was very nice, and very mindful of my texture difficulties. I didn't have any rough sensations when they were taking the electrodes off this morning, which was splendid! Drench my head, or drip warm water on it all you'd like, just don't give me rough textured stuff on there.
Apparently I was in bed eight hours. I think i only slept about six plus hours, but I really don't know. With waking up and all, it's hard to say. But I can tell you that when I woke up this morning, I didn't feel all draggy and like it was impossible to open my eyes. I've not felt that in a long time.
I napped some this afternoon at home, but the whole day I've felt more like myself than I have in over a week. Not a ton of energy to where I'm bouncing off the walls, but I feel something subtle but unmistakable.

My doctor was supposed to call me with the results from my treatment study last night, but she didn't today. I'm hoping she'll call me tomorrow. I'd like to find out how it went.
All my tech told me was that I did really well, and that they tried various pressures, including the 12 I was on last week. Also, I ramped up from 6, and then 8 later. On Eight I felt like I could breathe better, though the pressure felt really odd at times.

Not sure which CPAP machine I'll be getting yet. I'm going to try to find that out tomorrow or whenever I can get ahold of the person the clinic works with at the equipment supplyer. I hear she's very nice and very thorough, and she's the only one from that company that they work with. I'm relieved to hear such good things.

We'll go from here. Soon as I know more, I'll update.

I'd say that despite everything-the anxiety and waking up, and all my questions, I did well, and today I've felt surprisingly good. It's a welcome change.

[amyandtoby2011]

I got the call from my doctor earlier. And just a few minutes ago, the DME called! I'm sitting here in shock. I can't decide whether to be nervous or excited, though I definitely feel the latter. Who'd have thought the little preemie who was on the vent those first six weeks of her life, and who was terrified of masks (particularly just before surgeries), would be excited about a CPAP machine?!

THey tried me at several pressures the other night. Starting at 12, they went up to 14, then later, to 14.
At 14, my apneas were at about 1.5, but since most of my trouble is hypopnea (narrowing of the airway as opposed to not breathing for a few seconds at a time, as far as I understand it), they were the concern. All told, I had 7 events with a pressure of 14, and my snoring was at a medium. Much, much better than the 50 events and snoring from medium to quite loud of before, but they would prefer I have five or less events an hour
At 16, my snoring disappeared, and my events went down to 3. That is incredible to me, and would explain why all day yesterday, I felt so good, even after my mid-afternoon nap at home without the machine.
On 14, I had REM sleep, but on 16, I didn't when I was on my back. She said 14 would be acceptible, but that 16 is ideal, despite the lack of REM on my back. It might hae just been a coincidence, or because of my ever-persistent anxiety. I was encouraged that if there are problems, I should call in to the clinic.

The machine I'll be getting is the ResMed S9 Elite. Medicaid and Medicare cover 100% of the costs. I don't know how often I'll get replacement parts, like the mask, etc, but I'm sure they'll go over all that with me tomorrow.

I felt kind of bad when the DME called, because she was originally looking at Monday for when they could come out to me. I asked if she had anything sooner, and she was able to get me in tomorrow. I worry I sounded a bit too overeager or maybe even a little pushy, but to tell the truth, I'm just so ready for this change, that one less night without CPAP is a welcome reprieve. I'm ready, and I'm grateful they can come out.
Very nice on the phone, very helpful, and she's going to look for an accessible manual for me, if such a thing is out there. I'll have a print one, if all else fails, but I'd like to have something I can read if needed.
Most important is having the machine, though, and having someone out here who can help me get familiar with it. I'm not worried about that.

Taking my first steps down this new path feels good. Having that energy yesterday and even today to a point felt and feels like a dream come true. I've not felt like this in years.

[RomeinDNVR]

Amy--

It sounds like you had a very successful titration study, 6 hours of sleep is really good for being in such an unsual setting. Don't feel like you are being pushy or over eager, you went through a lot of heck to get to this point and there is nothing wrong with wanting to get everything setup right away. I wish you the best of luck, please let us all know how your first couple of nights go!

Regards,

Rome

[Gaga58]

So happy to read your latest post...being eager is your first step!!! And don't worry about pushy at all, this is your treatment and your health and you've just gotten a small taste of what is to come...you keep on pushing to get it even better!!! Yay for you!!

[msradar65]

Amy.
I was looking for post from you. Glad to hear the titration study went well. You are getting a good machine. I have S9 autoset myself and love it. I use it in straight CPAP mode.

I am glad you found a DME that is willing to work with you. I wish you well on you new machine. Keep us posted.