Newbie pls be gentle.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Mcsqueel9
Posts: 10
Joined: Fri Jul 17, 2015 3:31 pm
Location: Australia

Re: Newbie pls be gentle.

Post by Mcsqueel9 » Fri Jul 17, 2015 6:06 pm

I'll call the specialist Monday to see when we can get in to fight for his results. I've found with my extensive googling that I'm not alone in not being given results here in Australia. The specialist is almost aggressive with her own self importance and I do believe it's going to be very difficult dealing with someone who really isn't interested in her patients.
I did see about getting him into another respitory specialist, but he is booked solid for another 2-2 1/2 months. Perhaps despit the wait and cost it will be the best thing for him. I've dealt with the medical board and minister of health before and it seems to be a bum covering operation. Finally you get that irate you give up.
I've read some rather awful things about how sleep apnoea is dealt with here. Perhaps it will have a better outcome if I bite the bullet and see someone else.
It's horrible watching someone you love struggle the night away, feel exhausted all the time and not be able to help. I wish I had the option to shie you video of him asleep on his side. Can any of you think of anything I can do in the interam to help him get a better sleep? Propping him up to sleep ect??
Thank you all so much. I've learnt more and had more support for you than I've had from the people I've paid to be interested. Keep it up, I've got the feeling this forum will be an invaluable asset to getting him three this.

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Wulfman...
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Re: Newbie pls be gentle.

Post by Wulfman... » Fri Jul 17, 2015 6:14 pm

Mcsqueel9 wrote:I'll call the specialist Monday to see when we can get in to fight for his results. I've found with my extensive googling that I'm not alone in not being given results here in Australia. The specialist is almost aggressive with her own self importance and I do believe it's going to be very difficult dealing with someone who really isn't interested in her patients.
I did see about getting him into another respitory specialist, but he is booked solid for another 2-2 1/2 months. Perhaps despit the wait and cost it will be the best thing for him. I've dealt with the medical board and minister of health before and it seems to be a bum covering operation. Finally you get that irate you give up.
I've read some rather awful things about how sleep apnoea is dealt with here. Perhaps it will have a better outcome if I bite the bullet and see someone else.
It's horrible watching someone you love struggle the night away, feel exhausted all the time and not be able to help. I wish I had the option to shie you video of him asleep on his side. Can any of you think of anything I can do in the interam to help him get a better sleep? Propping him up to sleep ect??
Thank you all so much. I've learnt more and had more support for you than I've had from the people I've paid to be interested. Keep it up, I've got the feeling this forum will be an invaluable asset to getting him three this.
One of the things that is recommended for CPAP users when the electricity goes out is to try to sleep in a recliner or more vertical position. Back sleeping is the worst position for obstructive sleep apnea.

From my understanding, acquiring a CPAP (or APAP) in Australia is not hard, but quite expensive. Many users from "down under" manage to purchase their equipment from some suppliers in the U.S. Some manufacturers have restrictions on shipping the equipment out of the countries, but there are other ways to get around that at greatly reduced costs.


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

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Julie
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Re: Newbie pls be gentle.

Post by Julie » Fri Jul 17, 2015 6:16 pm

Not sleeping on his back if he does that now will lessen apneas and possibly help keep his mouth closed. And for the record - apnea is thought to be the cause of weight gain, not the other way around, so your doctor is doubly ignorant!

We've asked but not been answered, about where you live. IF you're near Melbourne, I know that Monash (Albert) Hospital has a very good program and good people...
Last edited by Julie on Fri Jul 17, 2015 6:27 pm, edited 2 times in total.

Mcsqueel9
Posts: 10
Joined: Fri Jul 17, 2015 3:31 pm
Location: Australia

Re: Newbie pls be gentle.

Post by Mcsqueel9 » Fri Jul 17, 2015 6:16 pm

Sheriff,
We've not purchased equipment yet. I have done extensive reading and even with our medical insurance it looks to be cheaper buying new from overseas. I was sure to include shipping and conversion rates, read the importation laws and I'm still $500 better off not using our insurance.
I've done so much research. But getting advice from people who've been in this situation and are living with it seems to be the way forward to learn now.
And how can I pass up the opportunity to say to my man "I told you so", it doesn't happen very often

Mcsqueel9
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Location: Australia

Re: Newbie pls be gentle.

Post by Mcsqueel9 » Fri Jul 17, 2015 6:18 pm

My apologies Julie. We are in adelaide.

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Sheriff Buford
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Re: Newbie pls be gentle.

Post by Sheriff Buford » Fri Jul 17, 2015 6:36 pm

Mcsqueel9 wrote:Sheriff,

And how can I pass up the opportunity to say to my man "I told you so", it doesn't happen very often
Sorry, I was speaking from my own experience. If my wife used that phrase to me... it would be in every other sentence!

Sheriff
I don't know if Resmed is the brand that is readily availiable where you live, but if it is. Airsense 10..autoset (new) or an S9 autoset for a used one. Make sure it doesn't say "Escape" anywhere on the machine. look for an Airsense 1

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palerider
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Re: Newbie pls be gentle.

Post by palerider » Fri Jul 17, 2015 7:00 pm

Wulfman... wrote:Thanks for the "welcome".......
well, of course, better late than never!

I shoulda guessed oz with high cost and dollars, as well as crap treatment.

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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palerider
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Re: Newbie pls be gentle.

Post by palerider » Fri Jul 17, 2015 7:05 pm

Mcsqueel9 wrote: From what I've read the whole sleep therapy/doctors seem to be nothing more than a racket.
there are a LOT of aspects of the whole cpap medicine thing that smack of it being a racket. it really can pay to learn and take control of the situation, thus figuring out what's bullshit and what's good, and avoid being taken for a ride.

the treatment DOES work for most people, and the success rates would be much higher if people came here first, rather than going through the mill. so you've already got a leg up.

_________________
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: S9 VPAP Auto
Get OSCAR

Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

yaconsult
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Location: "Silicon Valley", CA

Re: Newbie pls be gentle.

Post by yaconsult » Fri Jul 17, 2015 11:50 pm

Welcome!

It's wonderful when folks like yourself take the initiative to understand and look into their options - especially if they haven't been stuck with an overpriced dumb machine already. DMEs (Durable Medical Equipment suppliers) are the ones who provide the equipment when one goes through insurance. It's a lousy system because their profit is much greater on the lower end machine, so they do not have your best interests in mind.

Get a copy of the sleep study and a written prescription for an auto cpap machine. They may try to tell you that you have to deal with their equipment suppliers and their inflated prices. This is not true. I hope this process isn't too difficult for you. Here, we usually just call the doctor's office and they print a copy and drop it in the mail.

To get an idea of prices for new machine, our sponsor cpap.com has some of the best prices around. For used machine, we have secondwindcpap.com and they provide a warranty. Also, there are a number of respected forum posters there that will buy used machines when they see a good deal and resell them. Others here sell machines that they no longer need.

According to google, you also have craigslist there in AU, but most machines for sale on craigslist are grossly overpriced because everything is based on the "insurance" or "list" price. Sometimes there are good deals but it requires a lot of care in verifying that the machine works properly, wasn't used by a smoker, isn't too old, provides data, etc.

We get lots of visitors from other countries where the prices seem to be grossly inflated for the identical equipment. We should be able to help a lot. We always like to see people get machines that are compatible with the wonderful, free SleepyHead cpap software as this allows us to see the details of our nightly therapy and gives information we can use to make changes to our settings as necessary. Please check with the folks here before buying any cpap equipment to verify that it will have what you need.

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Mcsqueel9
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Joined: Fri Jul 17, 2015 3:31 pm
Location: Australia

Re: Newbie pls be gentle.

Post by Mcsqueel9 » Tue Jul 21, 2015 10:01 pm

After plenty of phone calls and lots of stress I've found him a new specialist. He goes in for another sleep study tomorrow night and the process starts all over again. How any of you have maintained your sanity I don't know.

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Sheriff Buford
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Re: Newbie pls be gentle.

Post by Sheriff Buford » Wed Jul 22, 2015 5:16 am

I have never seen a sleep doctor. My primary doctor sent me for a sleep study. The study showed I needed a machine an my DME gave me the worst machine! After reading this forum and educating myself, I went back to my primary care doctor and he wrote a prescription while I dictated to him. I got a good (data-capable) machine and continued to educate myself here. I get calls from his newbie patients all the time and I help them thru the process.

Sheriff

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ChicagoGranny
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Re: Newbie pls be gentle.

Post by ChicagoGranny » Wed Jul 22, 2015 7:01 am

Mcsqueel9 wrote:We've not purchased equipment yet. I have done extensive reading and even with our medical insurance it looks to be cheaper buying new from overseas.
When you get a diagnosis and new CPAP prescription, these people should be considered for your machine - http://www.secondwindcpap.com/

They have good deals on new/open box and gently used machines. They ship to foreign addresses.

Make sure to use the advice of this forum on the exact model number before finalizing a machine order.

Good luck,

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carbonman
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Re: Newbie pls be gentle.

Post by carbonman » Wed Jul 22, 2015 7:13 am

Mcsqueel9 wrote:Some of the posts here and in other places have left me feeling angry and discouraged.
Your experience is a Rite of Passage into the cpap world.
Get over being angry. Get educated.....here.
Get over being discouraged.....action kills fear.

Patience and persistence. Perseverance.
Keep asking questions.
It will come together.

I'll see you on the road.
"If your therapy is improving your health but you're not doing anything
to see or feel those changes, you'll never know what you're capable of."
I said that.

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carbonman
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Re: Newbie pls be gentle.

Post by carbonman » Wed Jul 22, 2015 7:34 am

Mcsqueel9 wrote:How any of you have maintained your sanity I don't know.
Ode to a newbie
carbonman wrote:I wish I could tell you how easy it is.
I put on the mask, I hit the blue light,
I'm adrift in the night.

It did'nt come easy you know,
infact it was a fright.
The straps and that mask,
....and....damn those blue lights,

I screamed and swore,
and cried out in the night,
"Why me? Why me?"
This just isn't right.

Out of thin air, through the ethernet,
came a glimmer of hope, as I cried out my plight,
"..please, don't spook me, don't scare me,
I just want to sleep through the night."

My questions were answered,
my mind put at ease.
We're here to help you,
all you got'a do....
is believe.

So, I listened and learned.
I chin strapped and glued,
and sealed up the holes.
I had tender, scraped nares
and a bruised, bleeding nose.

Night after night, I begged for relief.
"Please, please...give me back my life!"
Then one morning, just after first light,
a release from the pain, the fatigue,
just ever so slight.

Now.....it's just that easy.
I put on the mask, I hit the blue light,
I have a new life.
"If your therapy is improving your health but you're not doing anything
to see or feel those changes, you'll never know what you're capable of."
I said that.

mgaggie
Posts: 870
Joined: Sun Apr 21, 2013 4:30 am
Location: Victoria, Australia

Re: Newbie pls be gentle.

Post by mgaggie » Thu Jul 23, 2015 12:50 am

Sheriff Buford wrote:I have never seen a sleep doctor. My primary doctor sent me for a sleep study. The study showed I needed a machine an my DME gave me the worst machine! After reading this forum and educating myself, I went back to my primary care doctor and he wrote a prescription while I dictated to him. I got a good (data-capable) machine and continued to educate myself here. I get calls from his newbie patients all the time and I help them thru the process.

Sheriff
Here in Australia we have to see a sleep specialist.