Just Diagnosed - Advice...in Australia

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Lozz08
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Just Diagnosed - Advice...in Australia

Post by Lozz08 » Thu Oct 07, 2021 10:09 am

Hi,

I have just been diagnosed with Severe Obstrucrive Sleep Apnea with an AHI of 117. My specialist says it’s the highest he has ever seen but reading this forum I see that people have had higher. I am getting an urgent cpap for hire tomorrow but will need to invest in my own. Any advice or recommendations on which one?

I have felt like crap all year and started to fall asleep at my desk and watching tv. Thought it was low iron but my Husband and Sister have noticed me gasping for air and said it was distressing to hear me sleep but only in the last year they have noticed. I’ve always snored. How long do you think I could have had this for, for it to be that bad or if it’s only just been noticed by others have I just only got it this last year?

I have put on 20kgs in the last 2 years after having my first child and losing my Dad. Although have always been on the bigger side. I also have really enlarged tonsils which the specialist said I may need to have removed but recommended several weight loss and maybe even surgery which I think is the only way I’m going to reduce my weight significantly within myself.

Anyway that’s my story any advice from anyone I’d be grateful. Thanks Lauren (Australia)

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ChicagoGranny
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Re: Just Diagnosed - Advice...in Australia

Post by ChicagoGranny » Thu Oct 07, 2021 11:25 am

Lozz08 wrote:
Thu Oct 07, 2021 10:09 am
Any advice or recommendations on which one?
ResMed AirSense 10 AutoSet
or
ResMed AirSense 10 for Her AutoSet
or
ResMed AirSense 11 AutoSet (Has both Regular and For Her modes in one machine)

https://www.resmed.com/en-us/sleep-apne ... -machines/

What are your prescribed pressure settings? Which machine has the doc prescribed?

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Julie
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Re: Just Diagnosed - Advice...in Australia

Post by Julie » Thu Oct 07, 2021 11:34 am

Hi - couple of things (the machines in the last post are the 'right' ones to ask for - very good).

Snoring will not be cured by the machine because you can snore without apnea and have apnea without snoring, but do try to NOT sleep on your back as it provokes snoring, but also many more apneas... there are tricks to use to keep from flipping onto your back overnight.

Losing weight can't hurt, though won't be a 'cure' either.

Hoping Cpap will cure you in time is not realistic either - lots of skinny people have apnea, but Cpap is like wearing glasses - take them off and you still can't see (or stop Cpap and you'll still have apnea).

Don't rush to get your tonsils (or other surg) done because this forum is full of people who paid for their doctor's houses but after a few months needed to go back onto Cpap. Sorry!

Good luck and come back with any Q's to this thread please so we can follow along and help when needed.
Last edited by Julie on Thu Oct 07, 2021 3:20 pm, edited 1 time in total.

Lozz08
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Re: Just Diagnosed - Advice...in Australia

Post by Lozz08 » Thu Oct 07, 2021 11:43 am

Thank you I have an appointment today to collect a hire one maybe that’s where they will suggest the right one. As for the pressure I am not sure but I have been given a prescription so maybe it’s on that.

I realise weight loss can’t hurt and may not be a cure. The specialist did say that he had a patient for the last 4 years who did lose 64kg and apnea went from ahi 103 to ahi 15 and she no longer needed the machine.

Although is an ahi of 15 still bad to not use a cpap?

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ChicagoGranny
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Re: Just Diagnosed - Advice...in Australia

Post by ChicagoGranny » Thu Oct 07, 2021 11:49 am

Lozz08 wrote:
Thu Oct 07, 2021 11:43 am
Although is an ahi of 15 still bad to not use a cpap?
On average, that patient is being awakened every four minutes. How healthy do you think that is?

Lozz08
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Re: Just Diagnosed - Advice...in Australia

Post by Lozz08 » Thu Oct 07, 2021 11:59 am

Yes I see not very good. Guess it’s CPAP for life it seems

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ChicagoGranny
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Re: Just Diagnosed - Advice...in Australia

Post by ChicagoGranny » Thu Oct 07, 2021 12:12 pm

Lozz08 wrote:
Thu Oct 07, 2021 11:59 am
CPAP for life
Double meaning

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Miss Emerita
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Re: Just Diagnosed - Advice...in Australia

Post by Miss Emerita » Thu Oct 07, 2021 12:15 pm

Loss08, be pretty forceful about what machine you get. Don't settle for a machine that lacks data capacity or autoadjusting pressure. In other words, there needs to be a slot for an SD card, and you need "auto" in tshe name omewhere. Like others, I strongly recommend Res Med machines over Phillips Respironics machines. The RM machines follow your breathing much more adeptly.

Yes, PAP for life -- and it will probably help you extend yours! Severe apnea puts your long-term health at risk along with making day-to-day life difficult.

When you get your machine, let us know. We'd be happy to help with tips about the best ways to get going with using it.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Lozz08
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Re: Just Diagnosed - Advice...in Australia

Post by Lozz08 » Thu Oct 07, 2021 1:46 pm

Thanks so much for the advice will do

GrumpyHere
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Re: Just Diagnosed - Advice...in Australia

Post by GrumpyHere » Thu Oct 07, 2021 7:01 pm

For best results you would be monitoring yourself via OSCAR (the Open Source CPAP Analysis Reporter)
In general, I would suggest on insisting on the three machines listed by ChicagoGranny.

But if you do decide on another machine, avoid machines that are not compatible with OSCAR.

This wiki article shows currently supported machines.
https://www.apneaboard.com/wiki/index.p ... d_machines

version 1.3 beta suppport some additional machines.
This version of OSCAR contains support for the following new devices.
. [new] Add preliminary support for ResMed AirSense 11 CPAP machines.
. [new] Add support for Fisher & Paykel SleepStyle CPAP machines.
. [new] Add support for DeVilbiss BLUE (DV6x) CPAP machines.
Last edited by GrumpyHere on Thu Oct 07, 2021 7:03 pm, edited 1 time in total.
ResMed Lumis Tx - VAuto mode

Lozz08
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Re: Just Diagnosed - Advice...in Australia

Post by Lozz08 » Thu Oct 07, 2021 7:02 pm

Thanks for that

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Respirator99
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Re: Just Diagnosed - Advice...in Australia

Post by Respirator99 » Fri Oct 08, 2021 12:11 am

G'day Lozz08, welcome to the forum.

A lot of Australian outlets have been pushing Chinese machines like BMC and others. Avoid these - they may well be good machines but are not really proven. And they won't be compatible with Oscar.

Because of the cancer foam recall, nobody should be selling Philips machines other than the Dreamstation 2. If you're offered any other Philips machine, walk away. If you're offered a Dreamstation 2, also walk away - the data is encrypted, which means you won't have access to it except what your doctor decides to show you.

Resmed machines are the market leaders for a reason - they are the best! They're also made here in Australia (North Ryde NSW).

You should ask for a full copy of your sleep test report (including the charts and tables) and upload a copy here. There are often things which are overlooked by the techs and doctors, which we may be able to point out. In particular, there seems to be a tunnel vision effect which says that all apnea is obstructive apnea. This is not so, and can end up with ineffective therapy. You should ask your doctor what percentage of central apneas showed up in your test, and what is their plan to treat it. If you have a lot of central apneas it's possible you'll need a different type of machine (at double the cost).

Best wishes
Paul
* Download Oscar
* Oscar help
* An alternative to Oscar - try SleepHQ

I have no medical training or qualifications. Take my advice for what it's worth.

Lozz08
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Re: Just Diagnosed - Advice...in Australia

Post by Lozz08 » Fri Oct 08, 2021 12:45 am

Thanks Paul have Just been given a rest med as hire for 4 weeks and they will be sending me the reports

Thanks for the advice

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zonker
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Re: Just Diagnosed - Advice...in Australia

Post by zonker » Fri Oct 08, 2021 10:49 am

Lozz08 wrote:
Fri Oct 08, 2021 12:45 am
Thanks Paul have Just been given a rest med as hire for 4 weeks and they will be sending me the reports

Thanks for the advice
a gentle correction-Resmed not rest med.
:wink:
people say i'm self absorbed.
but that's enough about them.
Oscar-Win
https://www.apneaboard.com/OSCAR/OSCAR-1.5.1-Win64.exe
Oscar-Mac
https://www.apneaboard.com/OSCAR/OSCAR-1.5.1.dmg

Lozz08
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Re: Just Diagnosed - Advice...in Australia

Post by Lozz08 » Fri Oct 08, 2021 11:18 am

Haha thanks it seems I have a lot to still learn

I’ve just woken up from 4 hours with the CPAP thought I was on a different planet didn’t think I could walk. What deep sleep feels like!!