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Just wanted to say thanks
#1
Just wanted to say thanks
Hey everyone,

Just wanted to thank you guys for the advice. As I posted in my other threads, I was having a lot of trouble, but I followed the suggestions and got an ASV machine, and it's much better.

Neither my respiratory therapist nor my sleep specialist knew I needed an ASV machine, even after another night in the sleep clinic. But sure enough, the ASV did the trick. Smile

So thanks! Thanks
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#2
RE: Just wanted to say thanks
Hi robotman,
It's great to hear that you were able to get an ASV machine and that you are doing well with it.
Keep up the good work.
trish6hundred
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#3
RE: Just wanted to say thanks
I just wanted to say thanks too for the Forum which helps people like robotman and people like me who study the answers on the board and learn how to make this therapy work. It has meant more to me than the Sleep Doctor and clinicians, although they have a large case load these days. It helps all of us to be heard about our CPAP and trials! Thank you Apnea Board.
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#4
RE: Just wanted to say thanks
(08-21-2016, 02:48 PM)robotman Wrote: Hey everyone,

Just wanted to thank you guys for the advice. As I posted in my other threads, I was having a lot of trouble, but I followed the suggestions and got an ASV machine, and it's much better.

Neither my respiratory therapist nor my sleep specialist knew I needed an ASV machine, even after another night in the sleep clinic. But sure enough, the ASV did the trick. Smile

So thanks! Thanks

I'm glad to hear you solved the problem through your own initiative. You had a very severe complex apnea. It's not easy to look at an individual's graphs and tactfully let them know their doctor and therapists are full of sh*t. You took it, and solved the problem.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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#5
RE: Just wanted to say thanks
Thanks to all for sharing helpful information. Keep up the wisdom of hard earned lessons for the education of us less informed.
Sleep-well

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#6
RE: Just wanted to say thanks
I've been a member of this forum for about 8 months now. One of the things that has become clearer is that OSA is not very well understood by the medical community, even by those who profess to be 'experts in the field'.

For example, I don't know of any organisation here in Australia that deals specifically with medical issues resulting from poor sleep. The only 'experts' I can talk to are the guys at the sleep clinic and based on my post diagnosis experience all they appear to be able to do is interpret sleep studies and make general recommendations. My own GP freely acknowledges that I now know more about sleep apnoea than he does but that's not surprising as he is a GP, not a specialist.

The sleep industry also seems to be driven by money over patient welfare. Sleep studies are bulk billed (free on Medicare with a GP referral) here and there is competition to provide those studies. However, there is no money for them in follow up with the exception of CPAP equipment providers. Sleep study providers are not allowed to also provide equipment - medical ethics was the reason given. But regardless of what you go through, there is no follow up. Interestingly, none of the providers monitor forums like these.

A few months ago I was at a DME trying to get a new nose piece for my mask. While I was waiting I started chatting to a woman who had brought her machine in so that the data could be read from the SD card. Obviously, I told her about Sleepyhead and forums such as this one and how she could read her own data by downloading SH. The conversation progressed to what changes had been made to her treatment. None!

When I went to the counter to order the nose piece which they didn't have in stock it was obvious the person behind the counter was unhappy with me, not surprising I suppose. When she said that the advice I gave the woman was illegal and she should report me I simply asked - "who to?" No response. The conversation that ensued made it clear that this company was not allowed to give any advice for fear of litigation.The bottom line is that we have GPS who know very little about sleep disorders being provided information by companies that aren't allowed to interpret the data they collect. No wonder there is a failure rate of over 50% of those who start OSA therapy.

So to reinforce the message from the OP - thank God for forums like these. You certainly got me on the right road after a dodgy start.
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