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To those of you not yet sure about all of this stuff:
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retired_guy Offline

Preferred Members-2

Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #1
To those of you not yet sure about all of this stuff:
Dear newguy, or newgal,

I was just thinking a few thoughts, and I thought I'd thunk them out here.

My sleep doc and clinic is the VA center in Portland. They diagnosed me, did my sleep test, and provided me with my equipment.

When they gave me the machine, they said "This is your machine now. We won't take it back."

"Ok," I thought; "if it's my machine I'm going to figure out what makes it tick."

That's when I discovered apneaboard.com and began my journey.

I have done great. At this point I really can't think of anything I would change or try to improve (which is a little frustrating for me). Things are really going well. Yes, sometimes I'll have a night where the leaks are a little goofy or something, but overall I have no complaints.

So I've been waiting for my latest followup appointment with my sleep clinic. I've been looking forward to it so I could show them what a good soldier I have been. I just kind of want them to know that their efforts on my behalf have paid off and I am very appreciative. I want them to know that when they told me the machine was mine, I took charge of that and my own health condition, and made it my business to do what needed done to get a good result. So yeah, brag a little. Besides, they think everyone is different. So I just wanted to show them I was the same.

This morning I woke up from another one of those "this is the best ever nights of sleep ever" experiences. If you have not had one of those "this is the best ever..." you will. They're great. If it weren't for the freight train running through the room (also known as the puppy chase) I would probably still be asleep. I was in a groove. Ahi? 0.0... Hours sleep? 9. Leaks? under 3. Pressure? Humming right along at the 11'ish range. Flow limit? Calm as can be expected. Number of times awakened - potty break? 0. ............a great night.

So I cancelled my appointment.

Here's the email dialog I had with the sleep clinic:

................................................................................​...........................................

Good morning sleep clinic guy,

I have an appointment scheduled with you guys on August 18th. I've been looking forward to this as I enjoy visiting with your team. However I am doing so well with my therapy that I really think I'll just be taking up space. So if your scheduling is such that you would be able to see someone else sooner if we cancelled my appointment I'm good with that.

If desired, I could send the data from my SDCard as an attachment for your techs to review and update my records. What you will see is my ahi stays much below 0.5 daily. My leak numbers are good, and my usage is typically 8 - 9 hours a night. What it won't show is how pleased I am with this whole thing. From the very beginning when the sleep lab hooked me up to all your strange gadgets to now. It has been a most positive experience.

I would like to give back somehow. I know that the drop out rate from cpap therapy is quite high, and I know the learning curve is also sometimes challenging for people. If there is something I can do to be helpful to others please sign me up. Sometimes lay-lay interfacing might be a good thing.

Anyhow let me know if you agree that we could/should skip the August 18th appointment.

..and thanks for the Resmed P10 mask. I highly recommend this thing to others, and I was the poster child for "can't breath through my nose."

--- Retired_Guy

............................

Mr Retired_Guy,

I'm glad to hear you are having such a good experience with you CPAP device. Please remember to order new supplies every 3-4 month that way you are not dropped from our Program. I will cancel your appointment for 08/18/14 and if you need to see a CPAP Tech just give us a call or send me a secure message and I will call you to schedule. Thanks and have a wonderful day.

sleep clinic guy

(Actual names redacted to protect all the good folks at Homeland Security.........)
................................................................................​............................................................

What is my point in all of this? Just simply this: I know many of you get discouraged as you begin this journey. I know sometimes it's really tough to get it all figured out. I know sometimes you just want it all to go away. I know all the bad stuff........

But I also know the bright end of the tunnel, where you no longer snore like a fog horn, you no longer fall asleep walking across the room, you are not banned from the bedroom because the cats can't rest. No longer do you have to feel guilty because you take so many prilosec or other gerd pills that you have created a shortage in the rest of the free world. You will drink coffee if you love it, not 15 cups a day in order to survive. I also know that my body feels better than it has in years. I know my heart is better than it was. Ecologically, I know I save water by not flushing 5 times a night. I know these things and many others will come for you too.

What it requires is committment to the program. A willingness to be the solution and to understand what your body is doing, what the machine is doing, and how to make the two enjoy doing it together. What I used to call "become one with the mask." I do not advocate doing anything without the knowledge and approval of your medical team. I do advocate personal responsibility to the extent that you figure out what you feel needs to be done and if necessary educate your docs as to why you have reached this conclusion. Reasonable and responsible health care providers will work with reasonable and responsible patients to achieve the best outcome for their condition. If you have one of the "less enlightened" docs, one that just cannot be educated, then move on. It is your body, your machine, your life, and your responsibility.

It takes work. Sometimes lots of work.

But we're here to help. That's what Superguy set out to do when he invented this site. So you have already taken the first step: you're here too.

Good job with that.
08-08-2014 12:28 PM
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rjbar46 Offline

Members

Posts: 7
Joined: May 2014

Machine: ResMed S9 auto set
Mask Type: Full face mask
Mask Make & Model: F&P Simplus - It ROCKS
Humidifier: ResMed S9
CPAP Pressure: 14
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Alamogordo, NM

Post: #2
RE: To those of you not yet sure about all of this stuff:
What a GREAT story! Its just what some people will need to keep going. I am new and share your thoughts and attitude towards this and after just one night believe I will once again enjoy my awake hours insted of fighting through them.

Thanks again!

Robert.
08-08-2014 12:42 PM
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surferdude2 Offline

Advisory Members

Posts: 1,077
Joined: Jul 2014

Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro & Optilife
Humidifier: ResMed H5i @ #3 if nose breathing & #5 if mouth breathing
CPAP Pressure: 12 ~ 20 & 11 ~12 if nasal mask
CPAP Software: ResScan SleepyHead

Other Comments: Late stage 2 emphysema

Sex: Male
Location: Mousetown, Southern Illinois

Post: #3
RE: To those of you not yet sure about all of this stuff:
You're an inspiration to all who come here. This site has no doubt improved many lives and likely has saved several as well. Sleep deprivation is acknowledged as being a major factor in suicides.

I salute you and rest of the wonderful group here who take the time to help those of us who are just beginning out journey back to normal lives (hopefully). Well, actually how normal is it to wear headgear to bed?

The treatment here is splendid and it's much quicker than waiting for an appointment with some guy that probably doesn't understand how miserable life when sleep won't come.

Did I mention that the price is right... just kick down a few coins for a donation and keep this site going forever more. Let your conscience be your guide and your wallet be your limit.
08-08-2014 12:46 PM
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trish6hundred Offline

Advisory Members

Posts: 6,436
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #4
RE: To those of you not yet sure about all of this stuff:
Hey retired_guy,
Thanks for your very encouraging and helpfulpost.
It's so good to hear that you are doing well after all the work you have put into your CPAP therapy, such a reward is that.
I know you will keep up the good work, CONTINUED SUCCESS.!

trish6hundred
08-08-2014 02:34 PM
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trish6hundred Offline

Advisory Members

Posts: 6,436
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #5
RE: To those of you not yet sure about all of this stuff:
(08-08-2014 12:42 PM)rjbar46 Wrote:  What a GREAT story! Its just what some people will need to keep going. I am new and share your thoughts and attitude towards this and after just one night believe I will once again enjoy my awake hours insted of fighting through them.

Thanks again!

Robert.
Hi rjbar46,
WELCOME! to the forum.!
It's great to hear that you have such a positive attitude toward CPAP therapy, that will go along way for you as you go down this road.
Best of luck to you and keep on going.

trish6hundred
08-08-2014 02:40 PM
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Bompa Offline

Monitors

Posts: 854
Joined: Mar 2012

Machine: DreamStation Pro
Mask Type: Nasal pillows
Mask Make & Model: Nuance Pro
Humidifier: DreamStation Heated Humidifer
CPAP Pressure: 12.0
CPAP Software: SleepyHead Other Software

Other Comments:

Sex: Male
Location: Falkenburg,

Post: #6
RE: To those of you not yet sure about all of this stuff:
You make me proud of you retired_guy.

You an inspiration to us all, Not just newbies but some of us older fellas.

Keep up the good work my man!

Coffee 5 SHa_clap2
08-08-2014 02:44 PM
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Terry Offline

Advisory Members

Posts: 553
Joined: May 2014

Machine: Philips Respironics RemStar Auto with A-Flex (560P)
Mask Type: Nasal pillows
Mask Make & Model: P/R Nuance & Pap Cap
Humidifier: Integrated
CPAP Pressure: Auto
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #7
RE: To those of you not yet sure about all of this stuff:
(08-08-2014 12:28 PM)retired_guy Wrote:  My sleep doc and clinic is the VA center in Portland. They diagnosed me, did my sleep test, and provided me with my equipment.

When they gave me the machine, they said "This is your machine now. We won't take it back."

"Ok," I thought; "if it's my machine I'm going to figure out what makes it tick."

That's when I discovered apneaboard.com and began my journey.

Thanks for the story! Mine is similar, although not with the VA.

Apparently the only way to make this stuff really work is to take charge of your own life and do it yourself.

It might take trying a bunch of masks and even "losing" money on those that don't work out, and learning how to read your own data, but I can promise that nobody on the planet cares as much about how you feel, than you. (not just "you", but any "you")

Read the data, find the problems, fix them and be persistent. Rinse and Repeat 8-)

It pays off in the end with waking up with "Hey! I'm awake!" instead of "I'd give anything to not go to work today".

The only sad part about this whole business are the people who get sent home with a machine and a mask, and something doesn't work, and that's the end of it.

I think all the new machines should come with a big sign that says "This probably won't work really well without a bunch of tweaking. Call if you're not feeling great.", however that's not really how most docs and DMEs can work anymore.

So if anybody is discouraged, don't be. I spent 40+ years waking up, feeling like crap. I didn't even realize it was possible to wake up and feel great until a little over a year ago.

Terry

PS. This is from two days ago and is what "happy" looks like. 8-) It's quite an improvement from the AHI of 50+ without the machine:

[Image: sh_terry.png]
(This post was last modified: 08-08-2014 03:23 PM by Terry.)
08-08-2014 02:53 PM
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nightflight Offline

Members-b

Posts: 33
Joined: Aug 2014

Machine: Philips System One
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: unsure
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #8
RE: To those of you not yet sure about all of this stuff:
Sounds like it takes a lot of money to be successful with this, something not all of us have. I was looking at oral devices and that's really expensive.

Must be nice though to feel okay during the day.
08-08-2014 02:56 PM
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surferdude2 Offline

Advisory Members

Posts: 1,077
Joined: Jul 2014

Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro & Optilife
Humidifier: ResMed H5i @ #3 if nose breathing & #5 if mouth breathing
CPAP Pressure: 12 ~ 20 & 11 ~12 if nasal mask
CPAP Software: ResScan SleepyHead

Other Comments: Late stage 2 emphysema

Sex: Male
Location: Mousetown, Southern Illinois

Post: #9
RE: To those of you not yet sure about all of this stuff:
nightflight, Oral devices can be had for less than 100 bucks. I tried one and although it reduced my apnea, I couldn't stand the drooling and jaw pain it caused. That may just be me. YMMV so don't let me stop you from trying if you think it's best.
08-08-2014 03:10 PM
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Terry Offline

Advisory Members

Posts: 553
Joined: May 2014

Machine: Philips Respironics RemStar Auto with A-Flex (560P)
Mask Type: Nasal pillows
Mask Make & Model: P/R Nuance & Pap Cap
Humidifier: Integrated
CPAP Pressure: Auto
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #10
RE: To those of you not yet sure about all of this stuff:
(08-08-2014 02:56 PM)nightflight Wrote:  Sounds like it takes a lot of money to be successful with this, something not all of us have. I was looking at oral devices and that's really expensive.

Must be nice though to feel okay during the day.

You mean the masks?

I've probably spent $400 on masks that didn't work out, but if you consider that it's a one-time expense and about the same as the co-pays for 8 doctor's visits, it's not too bad. Also, some online places will sell you "insurance" so you can send back any mask you don't like. I was eternally optimistic, so I didn't buy the insurance often enough. 8-)

If you're talking about the jaw thing, my wife had one but it didn't work out well.
(This post was last modified: 08-08-2014 03:16 PM by Terry.)
08-08-2014 03:16 PM
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