First night on CPAP.

[congahands]

What a long strange journey it's been.

What a long way to go.

So I got my Respironics Pro w/cflex home yesterday around 4. The RT at the DME had me try it for a while. An initial pressure of 16 hits a lot harder than I expected. So after I got home I set it up and took a nap. I woke up a couple of times in the first hour, but then slept for two hours solid. Pretty encouraging for a start.

I woke up around 7:30. The first thing I noticed was that I wasn't having trouble breathing. I wondered if the pressure had dropped. Of course it hadn't but I was glad that it wasn't the struggle that it started out to be.

While I was up, I built a hanger for my hose, and attached it to the headboard. I went to bed at 10:30, and I woke up three times between then and 2:30 a.m.. Then I was pretty much out until 6:30 when the alarm went off. I woke up kind of groggy but not too bad. I had a significant indentation on the bridge of my nose, and some triangle face.

So I have 11 hours on the mask in the first 24 hours. I'm encouraged about that.

I've been looking through the book, and it says I can see the AHI and Leak information if the DME sets it. Of course they didn't. So any help getting into the menu to change that setting would be appreciated. I've tried a search of the forum but apparently I'm not using the right search arguments.

All the help you guys have given me has been invaluable to getting started on the right foot. Thank you so much!!!!

[congahands]

I found the instructions (THANKS WULFMAN!!!!) for allowing AHI and leak information to be seen!!!!!

[kteague]

Wow, you jumped right in there! With your preparation and eagerness to make this work, I'm guessing your adjustment phase won't be long. Congrats on a great start.
Kathy

[Wulfman]

You betcha!
I think every set of configuration/setup instructions has been posted on this forum (and multiple times) for almost every machine that has "button configurations" (as opposed to much older screwdriver and manometer-type settings changes) by a number of members.....and can be fairly easily found by doing some searching.
I think it boils down to the situation being that the more you know about your therapy, the more you'll care about it and the more successful you'll be with it.

Den

[congahands]

So I made the change to show my AHI and Leak info.

My AHI average is 8.5 and my leak rate is 45.6. I've heard two unofficial statistics from my initial PSG, a BDI of 50, and an AHI of 30.

I'll try to adjust my mask some more. I'm ordering my software and card reader today, but that'll take a few days. Trying to keep my spirits up now.

Don't worry, I'm not giving up. I don't know what I expected but 8.5 wasn't it.

Disappointed but still determined.

[Wulfman]

So I made the change to show my AHI and Leak info.

My AHI average is 8.5 and my leak rate is 45.6. I've heard two unofficial statistics from my initial PSG, a BDI of 50, and an AHI of 30.

I'll try to adjust my mask some more. I'm ordering my software and card reader today, but that'll take a few days. Trying to keep my spirits up now.

Don't worry, I'm not giving up. I don't know what I expected but 8.5 wasn't it.

Disappointed but still determined.

I had a pretty significant AHI my first few nights, too......then it started dropping below 1.0 and I got a big shot of encouragement.
I notice that you have the Quattro in your profile. If you haven't done the "Teflon tape fix" to it yet, you will want to consider doing so......otherwise at some point, it'll feel like it's leaking everywhere. Go up to the Search function and search on the word "Teflon"......should be quite a few threads show up.

Hang in there.

Den

[Cat]

I am a clinician in this area, I am very impressed with your time on the machine for the first night!! Keep up the good work! I would suggest if you have any questions or concerns re: your cpap or sleep habits, contact your provider or doctor, they can be a great help. The purpose of utilizing your clinician is that we want you to succeed in therapy, this can be a lifestyle change, so don't get discouraged, every night in the first few weeks can be different, just keep trying and I promise you will see a significant change in symptoms. Good luck and keep moving forward!

[bdp522]

if you have any questions or concerns re: your cpap or sleep habits, contact your provider or doctor, they can be a great help.

LOL


Brenda

[congahands]

Cat, I appreciate your suggestion. My doctors nurse has told me that I don't need to know anything about my situation until I speak with him after I have been on CPAP for a month. I'm not allowed to know my AHI, or the severity of my apnea, or what stages of sleep my apneas are interrupting. They will not even tell me if I am mild, moderate, or severe. I don't know and can't find out my study O2 sat, even though my cardiologist really wants to know, until the 30 days post apnea appointment.

Everything I know has been either pried out of sleep techs, or figured out on my own. For example, on my initial PSG, they didn't keep me the next day for a latency test, and they didn't think I was in a bad enough situation to switch to a split study. So I am somewhere between normal, and dangerously severe. I know my pressure because the sleep tech during the titration study accidentally left the prescription in my room while she went to get something else. So I read it.

My RT at the DME knows less about different CPAP machines and masks than I do from reading here and cpap.com for a couple of weeks. She can change the ramp time on my machine, since I am not "supposed to know how". Well, now I know how to do that myself so I don't really need her.

The RT at the DME didn't even set up my machine so I could see my AHI and leak averages. I guess they think that waiting a month to send my card results to the insurance company so they can get paid is customer service. I guess I just don't need to know whether my therapy was effective or worthless last night until I see my sleep doc in a month. The DME also seems to think that charging me $20.00 for 2 white filters ($10 each), when I can buy them on cpap.com for $13.99 for 6 ($2.33 each) is a reasonable profit. More than %300 markup is a little silly. I'd rather get them from CPAP.COM without insurance, than get raped by my DME.

If you are suggesting that I contact the techs at the sleep center, that is a great idea. They seem to be the most concerned about me of anyone in the process. Unfortunately, they are bound, apparently under threat of losing their job, to remain mum on anything having to do with my results. I may call them and ask some questions, but I doubt I will get an answer.

So far the only medical people who seem to give a darn about helping me manage my therapy, are my internal medicine doctor, and my cardiologist. Unfortunately my sleep doc appears to be keeping them in the dark as much as he has me.

I'm going to let my sleep doc know that his process for getting people on CPAP is about as patient unfriendly as it can possibly be. If he doesn't show some significant customer service skills, he's losing a patient. I already have a recommendation for a sleep doc who treats his patients like a part of the process, instead of like a problem to be dealt with by the "underlings" at the sleep center and the DME. It's quite possible that most of his patients just want to be told what to do and don't bother them with the details. That doesn't work for me, and if the fact that I do my homework and have at least a basic knowlwdge of what O2 sats, ejection fractions, leak rates, and AHI are, what mine should be, and want to know what mine are, then he's gonna be unconfortable with me as a patient.

Pedastals are for vases, not doctors.

If you have some suggestions for working with a doctor that sure appears to be a prima donna, other than giving him one more (undeserved) chance, and then firing him, I'm open to suggestions.

So far the best information on my condition and the only help in dealing with the emotional side of OSA has been from my co-hoseheads here. And if I haven't said it enough yet, I am soooo thankful for the encouragement and support of the CPAP community here!!!!!

[Georgio]

Doesn't he have legal rights to his medical information/records/sleep studies?

You couldn't make me wait a month! I think you have other options.

I would tell them hand over everything immediately, or you are going to check on it with your state professional licencing board.

Good luck,

Georgio

[rested gal]

Well said, congahands.

About this:

I've heard two unofficial statistics from my initial PSG, a BDI of 50, and an AHI of 30.

Instead of "BDI", that was probably RDI (Respiratory Disturbance Index) 50 and AHI 30.

I think an AHI of 30 is generally considered the threshold for being in the "severe" OSA category. If so, that AHI alone lands you in "severe."

These are the figures I'd go by, but I'm not anything in the health care profession:

0-4 AHI - "normal"
5-14 AHI - "mild"
15-29 AHI - "moderate"
30+ AHI - "severe"

At this link:
Practice Parameter

Quoting from page 3 of:
Practice Parameters for the Use of Continuous and Bilevel Positive Airway
Pressure Devices to Treat Adult Patients With Sleep-Related Breathing Disorders
An American Academy of Sleep Medicine Report

"The respiratory disturbance index (RDI) is used synonymously with
the apnea-hypopnea index (AHI) unless stated otherwise. Mild,
moderate and severe OSA are defined according to criteria used in
the accompanying review paper: Mild, 5 ≤ RDI ≤ 15; Moderate,
15 ≤ RDI ≤ 30; Severe, RDI > 30 episodes per hour of sleep."

[congahands]

The good news is that I had another full night of sleep with the mask on. It was only a little over 7 hours. But I'm not finding any reason to pull it off in the middle of the night.

So I put teflon tape on the swivel of the mask, and corrected the seal. The few times I was awake I checked for any leaks I could feel. My leak stat is down slightly (45.6 to 42.2). My AHI is up from 8.5 to 13.5. I'm ordering the card reader and software this morning. I don't think I will know anything until I get those.

Okay, here's a REALLY stupid question that just occured to me. When I get up to go to the bathroom(2-3 times a night), I just unhook the hose from the mask and hook up again when I get back. I can see where that might register as a leak, would it register apnea or hypopnea events???

Maybe my numbers are just because I'm an idiot and am not hitting the off button during my bathroom breaks.....

If that's my problem.....

[deerslayer]

perseverance & a positive attitude are half the battle , along with folks in the same boat as you. you will succeed in spite of the Geraldines(flip wilson) reference you may come in contact with.....to know is everything good luck !

[Guest]

If you are suggesting that I contact the techs at the sleep center, that is a great idea. They seem to be the most concerned about me of anyone in the process. Unfortunately, they are bound, apparently under threat of losing their job, to remain mum on anything having to do with my results. I may call them and ask some questions, but I doubt I will get an answer.

....ahhh.....am I missing something here.....
or am I actually showing signs that my cognitive ability to
process and evaluate information is improving.

If it's a great idea but you doubt you will get any answers,
why are you contacting them????
They are concerned but remain mum with information on
your results.........concern isn't going to help w/your therapy.

Just wondering......

[echo]

Hey congahands! Great to hear you're doing so well on your first few nights!!
As for

Okay, here's a REALLY stupid question that just occured to me. When I get up to go to the bathroom(2-3 times a night), I just unhook the hose from the mask and hook up again when I get back. I can see where that might register as a leak, would it register apnea or hypopnea events???

The only stupid question is the unasked one

No, there should be no way that your machine will register an event if the hose it off and air is leaking all over the place. How it will make your leak numbers a bit higher than they effectively are

Sounds to me like you should be changing sleep docs. These sleep-breathing-disorders can be really complicated in some cases, and if you're one of those, you don't want to be at the mercy of your prima donna doctor. I find it strange that even your cardiologist cannot get a hold of your data?!?? What they are doing is completely illegal. You have a right to your data, with or without the followup appointment!
Time to write a polite but strongly worded letter, and mention reporting them to the appropriate authorities.. that should get their attention!

Your rights to have access to your medical data, thanks to HIPAA: http://www.privacyrights.org/fs/fs8a-hipaa.htm#6