**Please Help!! My pressure needs to be changed!!**

OMG! Glad to be here. I'm a new OSA patient who's walking around completely untreated and bout to lose my job! I've been learning everything I can but started over at http://www.apneasupport.org. They have very strict rules for taking your treatment in your own hands. I hope my post doesn't get deleted but I need help. My sleep doc, her receptionist and my DME rep are completely incapable of getting me proper treatment. I'm at the point where I'm symptomatic all day long with ECS (excessive daytime sleepiness). My job is on the line and they don't answer my calls, emails, anything. She ordered a pressure change but no one at the office knows how to get it on to my XPAP machine. My body and mind is all F'd up right now and I need to get this fixed. Will someone tell me how to change the pressure on my machine myself? Right now it's an APAP set at the broadest range (4-20 pressure). She now wants it and it needs to be set at striaght CPAP, blowing a constant pressure of 13 with a fifteen min ramp up. Will someone show me how to do this since they can't. I'm smart, capable and not gonna screw up this treatment. The receptionist said my pressure settings would automatically change when I inserted my SD card back into my machine. It didn't work! How do I go in and adjust this myself? I hope my question here isn't out of line with the rules of the forum but I'm desperate! I need some REM sleep! I just need your guys' help to get this changed. It's 2:08 AM right now and I'm just a mess. Please help! Here's the machine I have:

31 year old male
dx: moderate OSA
Symptoms: EDS and periodic sleep "crashes" (17-48 hrs long)
Philips Respironics System One REMstar Auto APAP A-Flex w/ SD Card and Humidifier
ResMed Mirage Liberty Full Face Mask
Email: Lfloyd87@hotmail.com


Here's an email I just wrote to my doctor and her crappy receptionist. Arghhhhhh.

Sorry it's so long but I'm desperate here. Will someone help me!???

Hi Brie. It's after midnight, my body is all messed up from this sleep disorder. I'm awake (after sleeping like 18 hours stright and missing work. Again!). I wish I could have accomplished what I needed to do yesterday with you guys. I'm new to San Francisco with a new job and I can't afford to not be able to get any REM sleep. I'm sensitive to apneas and there's too many of them happening per hour when I sleep. Therefore, I'm a disheveled, crazy mess right now and my boss is not happy! I need good treatment and I need to get quality sleep! Dr Bigalow wrote a script to change my APAP (4-20 pressure range) to straight CPAP pressure, blowing at 13. You made the changes in the computer but it didn't pick up or read it when I inserted it into my machine. From what I know about computers, there's more steps to transferring data than simply slipping an SD card into a machine. This is very unfortunate since my job and my sobriety and my whole life is kinda on the line since my body can't get any REM sleep! I despritely need this to happen so I will be at your office with my machine in the morning sometime before noon. I'm writing this so you can get a headstart on what to do to rectify this. I was surprised that Dr Bigalow didn't know anything about how to change these pressures. She passed the buck onto you and there's a disconnect somewhere and I'm not getting the treatment I need. Please line up a plan as to how we're gonna get this pressure changed. Where's Crys on Friday mornings? She never responds to my voicemails. I'm paying alot of money for pretty horse$hit treatment (in my opinon). I don't have a cell phone number for any DME rep. If you can't troubleshoot this at your desk and get my machine up and running with the new pressure changes, I'm gonna have to find some DME rep somewhere who can, track him down and get this done. I guess I need that script that Dr Bigalow wrote in my hand. Will you please get that for me? I'm a medical equipment rep (although not DME) and I've been in the industry for over a decade (capital equipment, implants, disposables, etc..). I work in diabetes care right now. I've worked for companies big and small, boses micromanaging and bosses I barely ever talk to. I say this because If I was working in Crys's position for Grove Medical, I'd be a little bit afraid that someone would complain to my manager about me being somewhat stand-offish and lazy. She's exhibited these behaviors enough for me to start holding a resentment against her. I know Dr Bigalow gives her glowing accolades all the time and says that she's awesome and the best but I might knock on her manager's door and wake them up a little bit. I'm sorry I'm such a high-manteince patient but every day this sleep disorder is screwing over my life and I can barely work. You bet I'm gonna be meticulously picking this apart to learn how to use an XPAP machine and get my life back. I can look on the internet on these sleep apnea message boards (forums). There's tons of people there that know how to take control of their treatment by going in and learning how to change the pressure settings by themselves. Please don't make me have to learn about this. I'm paying you guys to treat me... I will stop in and see you sometime this morning. I hope I walk outta there proper treatment going forward... See you soon...

Hi,

Scroll the wheel to Setup, but don't click.. Hold in both the wheel & Ramp buttons for 5 seconds to enter the clinical menu. (It will beep twice)

Change your settings to what you've been recommended. Turn off the lock feature if it lets you..

If it still reverts to SD settings, you will need Encore Pro to edit your patient record.

I haven't hacked the checksum algorithm to do this without Encore Pro yet.

Hope this helps.

Ok I'll try that when I get to my machine. Quick question though... Since I have some sort of data profile on their computer, will they be able to see what I'm doing and what I've done if they pull up my stuff on their computer?

If you are not satisfied w/their service what do you care whether they will be able to see what you're doing and what you've done if they pull up your data on their computer?

I have a PR SystemOne BPAP Auto w/Bi-Flex and I can change my settings via the LCD screen (haven't tried setting via EP2).

Grrrrrr. The forum can't seem to figure out whether I am here or not! Or who I am!

Paul Van Dyk wrote:Ok I'll try that when I get to my machine. Quick question though... Since I have some sort of data profile on their computer, will they be able to see what I'm doing and what I've done if they pull up my stuff on their computer?

It is YOUR body, YOUR machine YOUR Data and they work for YOU. Not the other way around. Think of diabetics - my 80+ year old mother can check her sugar level and give her self shots, why should you not be able to give yourself AIR?

SlinkyToo wrote:If you are not satisfied w/their service what do you care whether they will be able to see what you're doing and what you've done if they pull up your data on their computer?

I have a PR SystemOne BPAP Auto w/Bi-Flex and I can change my settings via the LCD screen (haven't tried setting via EP2).

Grrrrrr. The forum can't seem to figure out whether I am here or not! Or who I am!

I wouldn't give a $hit if they knew. I just wouldn't want them to be able to change it back after I manipulate it or shut it down or call my insurance or something stupid. Once I don't need anything from my doctor's office, they can go fu*k themselves. They're not smart people. The smartest people are here. Experienced, been in the trenches, doing the dirty work. When you come back for your follow-up appt, the doc seems to get pissed if you start asking in-depth questions.

BlackSpinner wrote:

Paul Van Dyk wrote:Ok I'll try that when I get to my machine. Quick question though... Since I have some sort of data profile on their computer, will they be able to see what I'm doing and what I've done if they pull up my stuff on their computer?

It is YOUR body, YOUR machine YOUR Data and they work for YOU. Not the other way around. Think of diabetics - my 80+ year old mother can check her sugar level and give her self shots, why should you not be able to give yourself AIR?

Wow! That's a great little compare/contrast statement to have in my pocket and fend off stupid clinicians with. Thanks! I'm gonna prolly use that sometime!

Hi Paul! Welcome, and I'm glad you found this place because the people here really, truly, and deeply know their stuff. I doubt I would have stuck with it without these folks.

Rest assured, your insurance company does NOT care what your pressure is, or if you are changing it on your own, or if you are proactive and managing your own therapy. They only care about compliance, i.e., are you using it for about 4 hours a night on average.

Blackspinner's analogy is spot on and perfect. It still amazes me that xpap patients are kept in the dark so much regarding their own therapy.

Congrats to you for taking charge of your therapy and doing what you need to find that "sweet spot" for pressure. It may take a bit of experimentation on your part, but you'll find it.

Weezy

Yes, very well put, BlackSpinner.

Paul, if you take your data card to anyone with the "pro" version of the software, they'll be able to see what settings you were using. I don't know if it shows whether the pressure was changed manually or through the SD card. But assuming they're organized enough to notice (and from what you've said, I wouldn't count on that), and assuming they object to you setting your machine to the pressure your doctor prescribed, what exactly are they going to do about it? I suppose your doc could refuse to continue treating you, but how bad would it be to trade these folks in on a competent team? No matter what the excuse about Encore Pro and the SD card is, if your doctor objects to you following her own prescription, I don't think she's even sane.

Hi Paul! Welcome, I'm sure you'll find lots of practical, uncensored advice here. That other board sure does a lot of moderating . Get some soft wear, Encore Pro, ask around, or Encore Viewer ,99$ at CPAP.com. You'll get everything sorted out and feel so much better.We are here to help! Kathy

I've worked in healthcare for over a decade. Most of the time, I know more about what's going on than any doctor or clinician there. It's hard because you just have to keep your mouth shut so they feel like they saved the day! Retards! LOLz

Paul,

If you search in the box under CPAPTalk.com, you can find links to the entire clinician's manual for your machine. With that and the software, you're good to go. Don't worrry about the CPAP police if you change any settings--nobody cares and even if they did, all the changes you are making are those your doctor's tech THOUGHT she did already.

The clinicians in my sleep lab are great, but they were having difficulty changing the settings on the machine from the software as well--it seems to be a bit tricky. Much easier to do on the machine itself, and if you can take your MACHINE in to the next appointment they may be able to do it right there (they will probably hide how to get into the clinician's menu so you won't be able to "mess" with the settings ). Really, they are so full of themselves sometimes!

You doctor sounds OK, but most doctors don't get involved in the settings on the machine. The disconnect happened between your doctor's office staff and the DME. So for now, keep working with your doctor, but as settings need to be changed, you can do it yourself and save (yourself ).

Preaching to the choir, kid!
Welcome to our 'little' gang of rebels.

chunkyfrog wrote:Preaching to the choir, kid!
Welcome to our 'little' gang of rebels.

+1

Welcome to the dark side, my young apprentice.

Drowsy Dancer

Drowsy Dancer wrote:Welcome to the dark side, my young apprentice.