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First post, requesting advice and a little rant
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pholynyk Offline

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Location: Ontario, Canada

Post: #11
RE: First post, requesting advice and a little rant
(08-11-2016 03:22 PM)jessamnda Wrote:  
(08-11-2016 02:35 PM)justMongo Wrote:  Amazon is free to conduct their business at their own risk.

Absolutely. Quite shocking though that a company that size would sell items requiring a prescription. They don't sell cpaps, I assume it would be just as easy to filter masks. Just thought it was interesting.

I suspect that if you look at the masks for sale you will find that they are sold and fulfilled by a third party vendor, not by Amazon. Perhaps that insulates Amazon from liability.
08-11-2016 04:18 PM
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DariaVader Offline
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Post: #12
RE: First post, requesting advice and a little rant
and there *have* been machines for sale there (3rd party) from time to time. I suspect Amazon does not "allow" it, but they don't have automation in place to catch it and must do so manually

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
08-11-2016 04:26 PM
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Ockrocket Offline

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Location: Windsor (near enough) NSW, Au.

Post: #13
RE: First post, requesting advice and a little rant
(08-11-2016 07:19 AM)roudabushmc Wrote:  So I went out on my own and researched machines. It just so happens that my uncle had a brand new dreamstation auto bipap that he did not need (long story regarding a poorly planned move to a new state there). I asked him if I could try or have the machine since and he said of course. He has been a long time advocate for cpap.

One week ago I get a call that there has been a cancellation at the doctor and I can come in on the 3rd. I take them up on it, this is just an office visit to assess what to do next. I tell the dr why I went off before, that I think a bipap would better suited my needs and he essentially blows me off. Tells me he will submit to insurance for a home study and scurry out. I ask the receptionist how long until I should hear something and am told 3 weeks. Yesterday I get a call, no new sleep study (2 year old one is what we are working with) and the dr has taken the liberty of ordering me the same cpap machine at the same pressure from the DME across the hall. For rental, not for insurance to pay for outright.

This all seems wrong, I call back to speak with the dr but can only speak with his nurse. I explain my concerns that they are changing nothing from before, that I would like to try an auto bipap (that I cansupply) and she is flummoxed why I don't just want to rent the cpap from DME. Hang up with her with nothing resolved.


I have used the bipap two nights now, first night full auto full range. AHI 3.2, no snoring or complaints from my wife. Last night after looking at sleepy head and comparing to my old 5-15 rx I dial it in and have 1.2 AHI. Great sleep both nights.

So here I am, I am sleeping well and don't think I need the dr I have but he has already put my rx in. No call from DME yet and I asked them to cancelled everything. With a full time job and 2 year old I don't have time for unresponsive Dr's who don't listen. Any advice would be greatly appreciated. Will get some logs up soon to get feedback but right now I just need to get through this Dr DME fiasco.

Thanks for your time
Matt

Getting back on topic here, as it seems Amazon put a fork in the road re the questions you asked. SHa_biggrin5

1.
Buy-beg-steal the Dreamstaion off your Uncle, it is working for you and you are happy with it [ok, so I'm biased... I just bought one two days ago after trialing one for two months during my setup and compliance testing.. great machine]

2.
GET A NEW DOCTOR..
GET A NEW DOCTOR..

[it was worth repeating Lolabove ]

...
Use the machine set on auto for a couple of weeks to see what your average max/min pressure numbers are, then you can work out what to set it for at fixed pressure.
That is basically what my specialist ordered be done for me, once he had the results from the auto setting he had the clinic set the machine to a fixed pressure... mainly because fixed pressure can give even better AHI numbers than auto from what I understand from him.

Though it sounds like your original 5-15 R/x is pretty much close to on the money.

But if you get a new doctor, plus already have the machine that can be set to auto for diagnosis purposes, between you and he things should be able to be worked out as to what fixed pressure settings suit you best.

I don't know how the system works for you over there, but here in Australia if we are not happy with our doctor or specialist we can just go and find another one until we get one we are happy with.

I'm new to all this CCRAP.... errr, I mean CPAP stuff myself, it is a steep learning curve.
I fully understand that you couldn't tolerate CPAP the first time around.
When I first started I was ready to give up after the first couple of weeks, it was a horrible period of even worse sleep than I'd had before using the CPAP.
The only reason I stuck with it is because my employer promised me I would be transferred back to my driving job if I got my commercial licence fully reinstated [medical based licence suspension following a work accident].
A week and a half ago I informed my employer that my specialist was prepared to sign me as medically fit to hold a commercial driver's licence, and that I would have my licence reinstated at the Court appeal scheduled for next week.
So a week ago, knowing they could put back on the monthly driver roster for September onward...... my employer sacked me, my manager is claiming 'restructure' so that I have no legal recourse against management or the Organisation I work for as a whole.
The real reason, I suspect, is that one particular manager doesn't like me as I've challenged her in the past to get better services for our aged clients, and also to fix issues that have put the drivers at risk.
She has now moved further up the management tree and is now 'in' with those who have the power to make big decisions.

There are many more knowledgeable people on this forum who will correct me on errors in my information or opinions.

Gather all the knowledge you can, and find a doctor who will work with you..

It is your health and your life at stake.

Good luck Matt.

Cheers,
Steve Sleep-well
08-11-2016 06:00 PM
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stanleydean Offline

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Post: #14
RE: First post, requesting advice and a little rant
roudabushmc and green wings,

After I kept bugging my PCP about some concerns he finally said "I want you to see Dr. M-----. Well, Dr. M--- who is in the same clinic, which is a plus, had been for me a well kept secret. He is listed as a pulmanologist but has specialty in sleep medicine and, after two visits I am well pleased. I had no clue that there was a sleep doc. in town. So you might explore that possibility and see if there might be a similar well kept secret in your case.

Stan
08-11-2016 06:42 PM
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icyura10 Offline

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Post: #15
RE: First post, requesting advice and a little rant
It used to be all sleep dr's are pulmonologists but not all pulmonologists are sleep dr.s

Recently (say within the last month or so) I was introduced to the notion of some very specialized off branches of sleep dr.s that are neurologists and psychiatrist.

I can wrap my head around the idea a neurologist could very well be a sleep specialist...

I'm still grappling with the idea of a psychiatrist specializing in sleep medicine.. I'm wondering if it's related to nightmares, or something like insomnia caused by some kind of psychosis or nightmares, what a truly scary thought!

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08-12-2016 06:33 AM
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roudabushmc Offline

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Post: #16
RE: First post, requesting advice and a little rant
So quick follow up, I have severed my relationship with that Dr. I feel that the way it was handled and the relationship with the DME are both no go's for me, just feels too fishy. Day 3 on my machine with my settings and it's only getting better so far (that I can tell anyway, data dump coming this weekend for some better analysis than I can do).

Buying masks or parts from Amazon is no issue for me, I don't really care to get insurance involved anyway. The word compliance (by threat of not covering my costs...) makes me want to scream and do other things. I don't like my hand being forced and the clinic and DME I went to feels like it is run by street thugs the more I think on it. So now that I am past the angry phase it is time to consult new docs. Worst case my pcp will write me an rx for masks in case amazon dries up. As an aside they do have several older 60 Series machines listed there now. If my uncle had not been so gracious in giving me his spare I would have gone that route. But I am loving my DS Smile
08-12-2016 09:36 AM
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green wings Offline

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Post: #17
RE: First post, requesting advice and a little rant
Ha ha! I feel exactly the same way. When I first heard the term "compliance" in relation to CPAP use, my immediate reaction was "I don't want to."

Yes, DME employees can come across very badly. I think there's some very unsavory "corporate culture" in that industry. The one I use does have a really excellent respiratory therapist right now, though. She's very patient-oriented.

I think a big shake-up in the DME business model regarding CPAP machines and supplies is going on right now in the US, so we may be seeing some defensiveness on their part as they see their profits threatened.

(08-12-2016 09:36 AM)roudabushmc Wrote:  The word compliance (by threat of not covering my costs...) makes me want to scream and do other things. I don't like my hand being forced and the clinic and DME I went to feels like it is run by street thugs the more I think on it.
08-12-2016 10:07 AM
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icyura10 Offline

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Post: #18
RE: First post, requesting advice and a little rant
It's immaterial about the industry.

Anytime, people in any "service industry" adopt the mentality and attitude they needn't listen to the client's concerns, requirements, desires, needs and questions it's high time to sever the relationship with that particular supplier.

First, I'm sorry to hear it came to that for you.

Second, I'm happy you grabbed the bull by it's horns and wrestled it to the ground.

Sometimes it takes real eggs to do it!

Good luck with your new supplier.

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08-12-2016 10:33 AM
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FFOGHORN Offline
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Post: #19
RE: First post, requesting advice and a little rant
(08-11-2016 08:47 AM)icyura10 Wrote:  I'd welcome you to the forum but there are others that do a much better job of it than me!


YECH!

First things first... take a deep breath, getcha' a cup o'joe n chill out.

Second, GET A NEW DR!

I no longer have time, nor will I tollerate for "medical professionals" that are self appointed "Demigods". These are the kinds of physicians that unintentionally do bad things to patients. Any time a physician refuses to listen to the patient, it's time for a change!

I can tell you I threw out a cardiologist out of my fathers room, then went and had a firm, direct, pointed conversation with with the chief of cardiology pertaining to this cardiologist that ordered a medicine to be given to my father that would flat out kill him. He's deadly alergic to it and the cardiologist wouldn't listen. I had to stop the nurse and everything else. That Dr. no longer has hospital privileges at that hospital. Whether he's still a Dr. I don't know.

So, again I'd recommend you to GET A NEW DR! and try again... it's worth while to have a medical professional in your corner on this particular affliction as there seems to be new technology going on all the time.


I can tell you I've learned this the hard way. Saying that, I've become my own best advocate as I take a very active interest and actively participate with the decision process of my medical care.

It's in your court.

Excellent post!!!

I feel like we're soul-mates.

Grouphug3
08-14-2016 01:46 AM
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icyura10 Offline

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Machine: RESMED AirCurve 10 VAUTO
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Post: #20
RE: First post, requesting advice and a little rant
(08-14-2016 01:46 AM)FFOGHORN Wrote:  Excellent post!!!

I feel like we're soul-mates.

Grouphug3

https://youtu.be/eYlJH81dSiw Dielaughing

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08-14-2016 06:31 AM
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