Newbie - Needs some straight talk... NOW!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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DreamDiver
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Re: Newbie - Needs some straight talk... NOW!

Post by DreamDiver » Sun Aug 24, 2008 1:06 pm

CorgiGirl wrote:This is very different than our experiences with Apria. They have a 30 day mask exchange policy. My husband is going in tomorrow to exchange his. The RT's we've worked with are very knowledgeable about OSA. They have downloaded data for both of us with no problems. Apria staff took time to talk with me about problems I was having *before* I became their customer. The "trial period" with a machine seems to depend on your insurance plan. (Our experience is with Tricare, which follows Medicare and rents the machine for 15 months before you own it.)

We are so pleased with Apria, after dealing with two other DME's, that we wrote a letter commending the staff at our local office. Like any big company, it depends upon the people you're working with directly. Sounds like DreamDiver got some bad ones and we found some good ones.
CorgiGirl,

That's awesome. I wish my Apria were like yours. [Edit: Further I would like to apologize for lumping them all together in one basket.] I truly wish more DME's would join the forum. I'm sure there are excellent ones out there, and I'm glad to hear that some of them are on the forum. It means someone's listening.

I'm curious why none have filled out the survey yet. It is anonymous, if they prefer. The interaction could be mutually beneficial. We'd learn more about the guff DME's put up with from cranky people like us, and they'd learn what we actually go through. If you don't have OSA and your business is OSA, where better can you go to get a clue what your clients go through? It may be that joining a forum like this where we talk about mouth taping and other unconventional mods that void warranties and skirt legal concerns could make them appear liable if they offer advice. However, like everyone else on the board, I'm guessing they're also subject to the clause at the bottom of every page: "The information provided on this site is not intended nor recommended as a substitute for professional medical advice." It's part of what we agree on when we join the forum.

I applaud the one RT who took the survey so far. Thank you.

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Last edited by DreamDiver on Sun Aug 24, 2008 1:08 pm, edited 1 time in total.
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Most members of this forum are wonderful.
However, if you are the target of bullying on this forum, please consider these excellent alternative forums:
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Chris

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Wulfman
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Re: Newbie - Needs some straight talk... NOW!

Post by Wulfman » Sun Aug 24, 2008 1:08 pm

FWIW:

The Blackstone acquisition of Apria was first reported by Slinky in this thread:

viewtopic.php?f=1&t=33262&p=282111&hili ... ne#p282111

From DreamDiver's link, I found this interesting:

"Lake Forest-based home healthcare provider Apria Healthcare Group Inc. released partial second-quarter results Wednesday but delayed final figures because of a possible accounting issue.

The company, which is being bought and taken private by Blackstone Group LP for $1.6 billion, is looking into a possible overstatement of accounts receivable reserves used to offset customers that don’t end up paying their debts. "

I wonder if some of their accountants came from Enron?

There are a number of these companies that are in trouble. One of them got de-listed from the NASDAQ earlier this year......it's stock is just about worthless.


Den
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
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swezey
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Re: Newbie - Needs some straight talk... NOW!

Post by swezey » Sun Aug 24, 2008 10:03 pm

Looks like I kicked off a little controversy - I'm sorry I didn't mean to. I'm happy to take ALL suggestions and try them and keep the ones that are effective for me and discard the ones that aren't but EVERY OPINION IS VALID. I've also decided that I will start a NEW thread as my journey begins. I'll try to name it something obvious or come back here and point a link to it after it's created. I hope many of you will join me on my journey back to better health! If you do, I promise to make regular posts about my progress, things I try, things that aren't working, things that improve my experience and health, etc. Maybe together we can make a model that encourages others to be intimately involved in their own therapy and help raise compliance levels to unprecedented new highs! Again, thanks to everyone who has shared their valuable experiences, advise and opinions - I APPRECIATE YOU ALL! I am seriously thinking about ordering my own equipment tomorrow so I can have it by Wednesday or Thursday at the latest - I am excited to get started! Look for the new thread and THANKS FOR JOINING ME!

P.S. Thanks for all the links RE: OSA and depression. I really think most if not all my depression is OSA related. My plan is to get on the "hose" as everyone class it and give it at least a few weeks and see if I notice any change in attitude. I'm not expecting miracles but I think I'll be able to tell if its having an effect. If not, then off to the doctor again....

- "Living Well is the Best Revenge"
- "Living well is the best revenge."

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goose
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Re: Newbie - Needs some straight talk... NOW!

Post by goose » Sun Aug 24, 2008 10:55 pm

Don't apologize for controversy Swezey!!!! Many times it brings out the best in our thought processes and the opinions are sharper......You'll find controversy in a lot of the posts here, so don't be shy!!!!!

I wouldn't give too much credibility to "Guests" that don't have the gumption to register and be identified before spouting their BS .....The guest here is no exception. I think he/she is lost. It's the OTHER FORUM that always tells people to go see their doctor, and if you try to take control of your own treatment you must be crazy, so perhaps they just got lost.......
When the doctor turns out to be less than adequate or just plain incompetent folks end up here asking questions. Many doc's still have the "God" complex -- you know, "Don't ask me any questions. You're not capable of understanding the answer" -- those kinds. World's full of 'em......

So in my mind, give this guest the attention he/she deserves.......none!!!!

Take care
cheers
goose

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Todd123

Re: Newbie - Needs some straight talk... NOW!

Post by Todd123 » Sun Aug 24, 2008 11:16 pm

Just to explain a little of what your results actually mean..
When it says you are on a pressure of 12, that is in centimeters of water pressure units. (hot mmHg or PSI). It is commonly put as 12cwp. Basically a normal CPAP device will have a pressure range of 5cwp to 20cwp. The pressure someone will need depends on their individual severity. The more often a persons airway is obstructing, or the longer its obstructing for, the higher pressure they will need. The basic principle behind the CPAP(continuous positive air pressure) device is that air is pulled in from the room, and sent through the hose and nasal mask at a higher pressure where it enters your airway and exerts an outward force - holding your airway open. Now, your stats were the following: 62 times per hour your airway was obstructing, 37 times there were arousals from sleep associated with these obstructions, the oxygen level of your blood went as low as 66% due to these airway obstructions when breathing becomes limited (it should stay above 90% at all times sleep or wake), and your heart rate maintained a fairly rapid rate of 77% because of the work it was having to do as a result of your desaturated blood oxygen level. Now, the "62" number is usually what we call your "AHI" or your "RDI". AHI= Apnea/Hypopnea Index...RDI= Respiratory Disturbance Index. Basically for most purposes these acronyms represent the same thing...how many times your airway was closing off per hour..whether because of complete airway obstructions that lasted 10seconds or longer in duration (Apneas) or complete obstructions of shorter duration (Hypopneas) or even because of partial obstructions where there was some airflow but it was very limited. An AHI of 62 is considered severe sleep apnea since anything above 45-50 respiratory events per hour is labeled as severe. 20-45 is moderate, and 10-20 is mild. Now, the "37" number represents how many times per hour you were experiencing arousals from sleep due to these 62 respiratory disturbances. As a person falls asleep at night, they progress through stages of sleep. Stage 1,2,3,4 and then a 5th stage of sleep called REM (rapid eye movement) sleep. Each stage is progessively deeper, and depending on our age, we are to spend an approximated time of sleep in each of those stages before entering REM sleep. REM sleep is our deepest stage of sleep (its where we dream) and it is where we obtain our REST and REJUVENATION for the next day. A normal adult (below the age of about 60 where our deep sleep becomes shorter in duration) should spend about 20-25% of their total nights sleep in REM sleep. When a person has sleep apnea, this architecture of sleep staging is interrupted constantly throughout the night. As one is progressing through these stages of sleep, they will experience an airway disturbance. As a result, the brain panics (mainly because of the fact that when we stop breathing, or 02 levels go down) and wakes us up to regain control of our airway. Even if we aren't waken up to the point of being bright eyed and bushy tailed gasping for air or choking, our brain is taken back from a deeper stage of sleep to a lighter stage of sleep..(ex. stage 3 to stage 1). As one can see, if this is happening constantly (or in your case..37 times an hour..once or twice every two minutes) its very difficult to initiate or maintain a deep sleep becuase we are constantly being interrupted in order to re-open our airway to breathe properly. So, as a result... someone with sleep apnea feels excessive sleepiness throughout their day...fatigue, sluggishness, depresssion, all sorts of things because they are never obtaining a DEEP SLEEP during the night.
The dangerous part of sleep apnea (besides the obvious feeling crappy during the day) is the 02 desaturations. Common sense tells us that if we stop breathing, we obviously aren't getting enough oxygen. This happens at night every time our airway obstructs....the oxygen levels in our blood decrease. This is very dangerous because it puts much uneeded stress on our hearts. As we know, our heart is the organ that pumps oxygenated blood out to the rest of our body. If our blood has much less oxygen in it than it should, then our heart has to work overtime (beat harder and faster) to do its job. Having to do this 6-8 hours a night puts our hearts at risk to be stressing itself for basically 1/3 of its existence. Research and study has made a strong correlation between Sleep Apnea and heart failure, heart arrythmias and such. A common scenario for many people with severe sleep apnea is the following: They fall asleep, start experiencing apneas- their 02 levels desaturate to dangerously low levels..(anything below about 65 is considered dangerous because it can cause sudden heart attacks). Because of this low 02 level, the heart starts beating like crazy to get 02 out to the body....it gets into some rhythm it can't escape from and bam...it goes into arrest. Now, this obviously doesnt happen to everyone, but it happens to more people than we like to think. Many people die in their sleep, and many people die of heart attacks... especially older people (who are more likely to suffer from sleep apnea since is a progressive disorder...meaning it gets worse as we get older). Think about it... USE YOUR CPAP MACHINE, not only will it make you feel better, it could SAVE your LIFE.
Now, the reason your CPAP helps you so much is because of what I touched on at the beginning. It holds the airway open. It doesnt nessecarily "help" you breath (unless your on a bipap machine with a backup breath rate...these types of machines are needed for pt's that have trouble remembering to breath during the night, not because they are 'obstructing'), it just holds the airway open allowing your body to work naturally and breath properly. When the airway is help open like it should be, our body begins naturally enting and staying in deep sleep like it should. Our oxygen levels also stay high and remain high throughout the night. The CPAP eliminates 99.9% percent of ALL airway obstructions, and can help us sleep like we've never slept before.
Ok, well hopefully that was some useful information to some of you!
I'm a registered sleep technologist with a bio degree. I've been working in the sleep field (clinical and business side of it) for about 6-7 years now. I love helping people feel better and watching their lives change due to getting a good nights rest!!

alnhwrd
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Re: Newbie - Needs some straight talk... NOW!

Post by alnhwrd » Sun Aug 24, 2008 11:45 pm

Excellent post Todd! I had heard that if your o2 levels dipped below 90% while you were in the hospital they put you on supplemental oxygen. Is that the case?

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Snoredog
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Re: Newbie - Needs some straight talk... NOW!

Post by Snoredog » Sun Aug 24, 2008 11:46 pm

swezey wrote:WOW WOW WOW!! THANK YOU THANK YOU THANK YOU!! I just logged back on after watching the Steelers pull out a close one over the Vikes (I actually stayed awake to the end!) to see if anyone had read my post yet - I COULDN'T BELIEVE IT - 8 REPLIES! I literally had tears in my eyes! What a great bunch of people but the best part was finally having some HOPE that things WILL get better and I will not feel this way the rest of my life....

To answer a few questions, I DID have the second sleep study done and they prescribed a "12" (not sure of the units PSI? mm of Hg??). I STILL have not gotten the results of the FIRST study but the same tech did both and she asked me if I had my first test results yet. When I told her "no", she said well I'll tell you a little (I guess they aren't supposed to say). I had an average of 62 SA's an hour, woke up an avg of 37 times an hour, my heart rate never went BELOW 77 BPM and my oxygen level got down to 66%. I'm not exactly sure how to interpret all that yet but it sounds pretty bad to me. She also said I slept a total of 182 minutes all night.

I DO have my prescription finally! It is for a CPAP at pressure "12" as I said above with "inline heated humidification" and a Respironics ComfortGel mask and head gear "size medium". As I mentioned, I'll probably buy this myself as Aetna wants me to use their "preferred provider" (who they probably own) who wants to charge my $250.00 upfront PLUS $60 a month for a year for a standard CPAP with no exhalation relief or auto adjusting and no way for me to view the data that is recorded overnight. I think I can get the ResMed APAP with A-Flex for less than this! Which brings me to a new question - does anyone know how to get the Encore Pro software?? I can get the card reader (I'm in the computer biz) but it's the software I can't seem to find.... Any thoughts on this would be great as I definitely want to monitor my own progress.

Anyway, thanks to everyone who has replied and to anyone else who decides to chime in!! I REALLY appreciate it and I am more motivated than ever before to finally get my life back!! THANK YOU ALL!!
Aetna sucks, I had them once, their provider is Apria, both will steal you blind. I'd tell Aetna to pay for the study and doctor visits and go buy the machine on your own and get the one you want. Check and compare your out of pocket for their plain jane "Plus" machine and a AFlex or AutoSet you can buy on your own.

1. Get a copy of your PSG from your doctor, you have been charged for it, have every legal right to a copy, you WILL need it.
2. Get the physical original of your prescription for the CPAP machine, don't let the fax it or say they send it "for you" that means they are going to sneak up and nail you from behind. You get the original, YOU fax a copy to the DME then hang on it. I suggest creating a folder and put your PSG copies in it and along with the script.

But compare your costs, $250 initial, then $60 x12=$720 +250 = $970 and you won't own it for a year, friggin rip-off, make sure you email cpap.com for your final price. I'd look at the Sandman Auto, Aflex or AutoSet II. You can get software for either one.

https://www.youtube.com/watch?v=pP7AJiQM2RI
someday science will catch up to what I'm saying...

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Virtus Velox
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Re: Newbie - Needs some straight talk... NOW!

Post by Virtus Velox » Mon Aug 25, 2008 6:06 am

Heck ya Swezy, I'd think we'd all want to stay informed of how you're doing! Keep it up..gets nuttin but better
Virt
Guest? sorry about your issues...hope you get them handled

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txnative
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Re: Newbie - Needs some straight talk... NOW!

Post by txnative » Mon Aug 25, 2008 6:32 am

Snoredog wrote:
Aetna sucks, I had them once, their provider is Apria, both will steal you blind. I'd tell Aetna to pay for the study and doctor visits and go buy the machine on your own and get the one you want. Check and compare your out of pocket for their plain jane "Plus" machine and a AFlex or AutoSet you can buy on your own.

That is a very general statement. I think your experience may depend more on what insurance plan you have rather than on the provider. I have Aetna and have had very good service from them!

When I called Aetna and told them about my bad experience with the DME my DR sent me to for the titration, they told me I could go to any DME and it would be covered. That is also when they told me I could purchase online and get reimbursed.

I was able to use my RX from my ENT and purchase the equipment (APAP) from cpap.com and get 100% back by check from Aetna. YMMV

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Began CPAP on Jul 22, 2008. Split Night Study failed to get a good titration pressure. Titrated (2 week home APAP) at 10. Currently using APAP at 13-15. Not using Humidifier. Even with SA under control, still can't sleep all night!

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gasp
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Re: Newbie - Needs some straight talk... NOW!

Post by gasp » Mon Aug 25, 2008 9:31 am

carbonman wrote:swezey, I don't need to quote anything from your story, because it is my story.

Tomorrow night will be my 2 month anniversary on the hose.
For me, it has not happened over night.....but it is happening.
It was the morning of the 4th day, that I got to work and I knew something was different.
Since then, it gets a little better everyday.
The fog is lifting, the depression is being replaced w/hope.
My energy is returning. I am returning to the person I was 6-8 years ago.
My brain and body are coming back to life.
I am a cyclist and I can feel it and see it as I get stronger and can recover after each ride.

If I wasn't seeing, feeling and living this recovery, I don't know that I would
believe someone telling me my story.

Get your equipment ASAP.
Get educated.
Become your own best therapist.
Embrace the mask.
Be patient w/yourself.

This is your life.

I always want to say Good luck, but it's not about luck,
it's about you taking charge of your therapy,
putting that mask on everynight,
and returning to the person you used to be.
ditto

and - you may have to try several masks before you find one you're able to embrace : ) I used the ComfortGel (my first mask) and ended up many masks later with a new favorite, the ComfortLite 2. One person's fav is not always the best choice for you, but one thing I've seen is that there are so many people that liked this mask I gave it a try and found it fabulous for me.

Also, as a noob I needed a mask that had lots of stability on my face. Over the last year I've learned to not squish my face into my pillow (thereby unseating a mask) or other such activity to keep my mask from unseating and thereby leaking.

Best wishes - I hope you get as much good info, support, and pleasure from communicating with the members here as I have!

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Chronitia
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Re: Newbie - Needs some straight talk... NOW!

Post by Chronitia » Mon Aug 25, 2008 9:44 am

yes, yes, yes!

It's funny...i'm about 2 weeks on the hose and have only slept through the night with it once. Most nights I have it on about 3 hours before I wake up and rip it off. So when people ask me how it's going I say "well...I'm still getting used to it...I don't know if it's having any effect."

Then my friends point out...in the last 2 weeks you've stopped whining about mornings, you don't yawn during the day, and you've started playing sports again and suggesting going out instead of sitting around.

So yeah, even a few hours a night on the hose has changed my life. Even if you don't notice it yourself, the change in energy is there and it will impact every area!

Also, I had a very hard time losing weight before...now in 2 weeks I've lost 6 pounds, just from using my extra energy and resting my heart a few hours a night!

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swezey
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Re: Newbie - Needs some straight talk... NOW!

Post by swezey » Mon Aug 25, 2008 11:17 am

Thanks again to everyone who continues to POST! I feel like I have so many friends here after just a few days! A few comments:

GOOSE - I'm not afraid of a little controversy either. A spirited conversation is always energizing to me. I just don't want someone to feel like they SHOULDN'T give their opinion because they might feel like someone else will attack it. Being new to this, I want to hear as many opinions as possible and don't want to scare someone away from posting. That being said, trust me, I'm not taking "Guests" advise of getting out there and walking 5 times a night. The sweat I wake up in every morning tells me I'm already probably overworking my heart every night as I struggle to sleep and breathe.

TOOD123 - WOW! What can I say!!?? Excellent post - thanks for explaining all the readings to me. Can I come back to you when I get my sleep study results and start getting info from my CPAP??

SNOREDOG - Sorry to hear about your troubles with Aetna. They were great during my diagnosis period. I just paid my copays and that was it! But getting the equipment seems to be a whole other ball of wax. I'll let you know how it ends up.

VIRT - Thanks - I definitely have decided to post ALL my OSA related experiences here. My hope is that it will help someone who is maybe too shy to post, or doesn't have the energy or time but by following my experience it will encourage them and help keep them on track as well. Seems like a small thing I know, but maybe it will help just one person.

TXNATIVE - As I mentioned to SNOREDOG, Aetna's been great up until the getting of the equipment part. I am going to try and get them to reimburse me but the math shows I'm better off if I go my own way. I end up with a more capable machine for less.

GASP - Thanks for your comments on masks. I kind of assumed I'm going to be in for a rocky ride until I find a mask I can really deal with well. I think I'll try the Comfort Gel since it seems to be pretty popular but I'm guessing that I'll be in a FF mask before long since I think I tend to open my mouth when I sleep. Maybe with the elimination of the SA's I'll keep my mouth closed but if not I'll be looking for a new mask pretty quickly I think.

CHRONITIA - WOW! This is the first question that led me to this forum in the first place. Sounds like you are doing GREAT after just two weeks! You don't know the kind of hope that gives me! THANK YOU for sharing - this is just the kind of encouragement newbies like me need to hear as we begin to embark on our trip back to wellness.

As an FYI, a VERY kind and helpful member WHO SHALL REMAIN NAMELESS helped me get Encore Pro 1.8.49 up and running on my PC. THANK YOU THANK YOU THANK YOU! Now I'm all set to record and (with some help from all of you) interpret my sleep results. So, it looks like I'm going with the M-Series REMstar APAP. Just have to order the card reader. I'll probably start the new thread today since I have an appointment today for a breathing study (PFT I think she called it??). But I'll post the link to the new thread in this one once I start it. Thanks again everyone!!

- "Living well is the best revenge"
- "Living well is the best revenge."

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gasp
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Re: Newbie - Needs some straight talk... NOW!

Post by gasp » Mon Aug 25, 2008 1:51 pm

You are off to a fabulous start!

Here are some links that may interest you:

Product Challenge Result Winner: Ultra Mirage II Nasal Mask vs ComfortGel
http://cg-umii-nasal.cpaptalk.com/

Respironics ComfortGel User Guide
http://www.respironics.com/UserGuides/1 ... ortGel.pdf

CPAP.com ComfortGel Info
https://www.cpap.com/productpage/comfor ... onics.html

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