Newbie - Introduction - And a 'Thank Goodness'

[quietmorning]

Good morning,

My name is BethAnna - I had my sleep study Monday night and received my CPAP machine yesterday. I was so glad to only wait a day! Last night was my first night. I have yet to speak to my doctor for the full run down of the sleep study - so at this point, all I know is that it is 'severe'.

I was sent to have a sleep study by the oral surgeon who was evaluating my TMJ. I jumped at the chance as I was about to call my doctor about waking up at night having to clear my airway and being very breathless. He made an appointment for me at the Sleep Center THAT DAY - and wow, did I get quite the education.

I'm hoping to:
Wake up in the morning without feeling like I've been hit by a brick.
Begin to lose the 50lbs I gained in the last three years. (have exercise and diet actually count for something)
Return my blood pressure to normal.
Return my heart rate to normal.
Have more than two hours a day alert time.
Give my husband a peaceful night without having to wear earplugs or load the room with white noise.

Last night was the first night with my CPAP - and it was pretty miserable. . .lots of kinks to work out and things to get better at - but thanks to reading so many of your replies yesterday I had a very realistic expectation before I went to sleep. Thank you for being here.

Wow. It's 8:00 AM and I actually feel awake.

Whaddyaknow!



I have a couple of questions. . . I have no clue how to read my machine yet. . .I'll take a look at the manual today with the machine and see if I can decipher what it all means but I noticed three things that were somewhat disturbing:

I kept needing to stretch to get rid of the CO2 buildup in my system during my sleep. Haven't done that during sleep hours before.
My hands and feet ached and got pretty stiff. . . wondering if I was actually getting enough oxygen?
I noticed that I was not breathing a few times (woke up, dangit) but didn't have an obstructed airway. . . is this just getting used to the machine . . .and possibly getting used to not having an obstructed airway for a change?

Thanks!

[Pugsy]

Welcome to the forum.

It does get easier and better.

I see they are using a modem for tracking compliance. SD card will come later? There is software available.
I have same machine that you have listed in your profile. Send me a private message with your regular email address and I can send you the clinician manual (has more information than the standard user manual) if you need it. Also if you want software, let me know. Where is the modem placed? Any SD card will do if the slot is still available. Doesn't have to be the high priced PR SD card. 2 GB cheapo SD card from Walmart will work.

There is data available on the LED screen. Do you know how to get to it?
What are your pressure settings? Also available on screen. If you don't know how to get to it check this link below
http://www.apneaboard.com/PR-System-One ... -Setup.htm

A look at your pressure settings and the AHI on the LED screen might help explain a couple of your questions.

[gasp]

It took months for me to get used to wearing a mask and more months to find a mask that worked for me. It probably took a year for me to sleep restfully and not be aware of my equipment. I wore the mask every night even when tempted to go without it to get a 'good night's sleep' understanding that eventually therapy would work and I'd experience real rest. Four years later I rarely am bothered by the mask or machine.

Best wishes!

[Sheriff Buford]

Keep up the good work. All the things you listed as "goals" can be attainable! You'll lose weight, drop your blood pressure and JUST FEEL BETTER after using cpap. But it will take some getting use to, nevertheless keep it up. Ain't no goin' back now!!

Sheriff

[chunkyfrog]

For me only 5 pounds of weight loss was automatic; but after a few months,
I felt I had enough energy (thanks to CPAP) to learn how to shop, cook, and eat well--plus walk a lot more.
I've been losing weight for the last 4 months and am only a couple pounds over my maximum healthy weight.
(still 'chunky'; but I was 'obese' when I started, and not very healthy)

[quietmorning]

Welcome to the forum.

It does get easier and better.

I see they are using a modem for tracking compliance. SD card will come later? There is software available.
I have same machine that you have listed in your profile. Send me a private message with your regular email address and I can send you the clinician manual (has more information than the standard user manual) if you need it. Also if you want software, let me know. Where is the modem placed? Any SD card will do if the slot is still available. Doesn't have to be the high priced PR SD card. 2 GB cheapo SD card from Walmart will work.

There is data available on the LED screen. Do you know how to get to it?
What are your pressure settings? Also available on screen. If you don't know how to get to it check this link below
http://www.apneaboard.com/PR-System-One ... -Setup.htm

A look at your pressure settings and the AHI on the LED screen might help explain a couple of your questions.

Thank you, Pugsy!

It is getting easier and better. . .just a few more kinks to work out.
The SD card will come later. . .I can't for the life of me remember when that will come. I believe at the end of three months, but I'm not sure. I really don't like how little information I have currently or that I didn't have a diagnoses discussion with the doctor after the sleep study and was only sent home with the word 'severe'. Heh. . .my control issues kicking in, I'm sure. :-/ All the same, I really wish there were more communication up front and THEN the follow up.

I looked at the data on the LED Screen - it is very very limited at this point. . . just whether I am compliant or not and for how many hours. The rest is sent via modem.

I'm not the kind of patient that likes having all the information held as if it's the doc's property. I like being a partner and being responsible for making decisions about my care - so this is going to be something discussed when I have my follow up. Letting doc's make all the decisions has nearly killed me several times.

I will contact you via email, thank you!

My pressure settings are 4 for ramp and 6 for cpap. The Tech said that I'm lucky that it doesn't take much pressure to keep my airway open. I'm still stretching at night, but not nearly as much as I did the first night. It seems to be just something I needed to adjust to more than anything else. (Maybe I wasn't stretching at night because I wasn't getting enough air in the first place?)

My hands and feet haven't ached past the first night.

I haven't woken up from not breathing w/o having to clear my airway past the first night, also. So, I'm thinking it may have been just my body wanting to know what was going on with all this AIR getting to it for a change?

[quietmorning]

Thank you everyone for the warm welcome!

I'm doing better with the machine. . .and am actually spending some hours a day not 'sleep walking' through it!

[LinkC]

Welcome!

Let me echo... It will get easier. And you will feel even better once you get your therapy dialed in. Mask fit and minimizing leaks is the priority at this point.

Even on a modem, you can see SOME of your daily data. Right now the "AHI" is the crucial data point. If you were diagnosed as "Severe" it indicates your AHI was 30 or more before CPAP. (That means you stopped breathing 30 times or more each hour. Scary, huh? I was 33...) You can compare that with your AHI on CPAP to see the difference.

Glad to hear you are having results already in the way you feel. Makes it worth the hassle, huh? It only gets better from here on...

[quietmorning]

Welcome!

Let me echo... It will get easier. And you will feel even better once you get your therapy dialed in. Mask fit and minimizing leaks is the priority at this point.

Even on a modem, you can see SOME of your daily data. Right now the "AHI" is the crucial data point. If you were diagnosed as "Severe" it indicates your AHI was 30 or more before CPAP. (That means you stopped breathing 30 times or more each hour. Scary, huh? I was 33...) You can compare that with your AHI on CPAP to see the difference.

Glad to hear you are having results already in the way you feel. Makes it worth the hassle, huh? It only gets better from here on...

Thank you, Link C - yes!! Definitely worth the hassle! It's great to wake up in the morning AWAKE and not like I have to sleep another four or five hours. . . and then finally wake up at 2 in the afternoon!

I looked at my AHI - it was 3. I think two of those episodes was water up the nose. **laughing**



I don't know how many times I actually stopped breathing the night of my test - but yes, 30 or more is scary!

[gasp]

. . . I'm not the kind of patient that likes having all the information held as if it's the doc's property. I like being a partner and being responsible for making decisions about my care - so this is going to be something discussed when I have my follow up. Letting doc's make all the decisions has nearly killed me several times. . . .

You'll fit right in here as this forum wouldn't exist without people who want to partner in their care.

[quietmorning]

. . . I'm not the kind of patient that likes having all the information held as if it's the doc's property. I like being a partner and being responsible for making decisions about my care - so this is going to be something discussed when I have my follow up. Letting doc's make all the decisions has nearly killed me several times. . . .

You'll fit right in here as this forum wouldn't exist without people who want to partner in their care.

Unfortunately that seems to be a constant battle here in the South. I've only met one doc in the last 10 years that wanted his patients to be informed and a partner in their healthcare.

[gasp]

. . . I'm not the kind of patient that likes having all the information held as if it's the doc's property. I like being a partner and being responsible for making decisions about my care - so this is going to be something discussed when I have my follow up. Letting doc's make all the decisions has nearly killed me several times. . . .

You'll fit right in here as this forum wouldn't exist without people who want to partner in their care.

Unfortunately that seems to be a constant battle here in the South. I've only met one doc in the last 10 years that wanted his patients to be informed and a partner in their healthcare.

I have a very good friend who lives in Tennessee and she agrees. She had to work at it to get her docs to include her in treatment plans. Keep up the good work! : )