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First post, requesting advice and a little rant
#1
Greetings, this is my first post to the board but I have lurked as a non member for quite some time. Apologies in advance for spelling errors as I am typing this on my phone at work.

Background, 2 years ago I was diagnosed with OSA but could not tolerate the therapy. Always felt like I was drowning even after trying to acclimate for several months. I went off of the machine and tried to change my lifestyle habits to no avail. Fast forward to two weeks ago. I make an appointment with my sleep clinic, they tell me they are booked until October so I will have to wait: that was straw one. 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.

Next I get a call from a tech explaining to me how I cannot have an auto bipap, no such thing. I could not possibly get the same therapy with that machine without a proper titration (never offered by Dr but what I essentially wanted). Go to call her back and she's gone for the day. I am at my wits end at this point.

I have used the bipap two n8ghts 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
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#2
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.

Warning: Eating chocolate may cause your clothes to shrink!
[Image: ry6XtE9.gif] <---- That's ME!
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#3
Hi roudabushmc,
Welcome to the forum, good move on your part to go ahead and join up. Sadly many of us have gone through the same frustration as you are experiencing. You got some good advice from icy in the suggestion to have a responsive medical pro in your corner but not to rely so heavily on that resource that you take your own initiative out of the picture. You are your own best advocate. This forum is a gold mine well worth the time and effort thanks to the relatively few that have and are willing to share so much knowledge and wisdom. I wish you success as you progress on your journey.
Stan
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#4
Hello, roudabushmc. Welcome to the Apnea Board forum.

Yep, sounds like you've had quite a frustrating experience with your doctor's office and DME.

I had a bad experience with my sleep doctor during my visit there last month. I'm still trying to decide whether the relationship is salvageable, or if I should look for another doctor.

Ideally, when someone has an experience like yours, I'd like to think that you could find another doctor who listens and who doesn't order up a CPAP machine for you without telling you first. Also, I'd hope that the people you are talking to would have heard of the machines that you're trying to talk to them about.

I live in a smallish town, so that's the only reason I haven't already changed doctors. I'm trying to find out if the other doctors are any better.

If it turns out that switching doctors isn't a good option for you, you may need to just call your doctor and say "I would like to use the auto-bilevel machine that I have. I would like to be your patient and see you for the twice-yearly visits required by insurance to cover my CPAP supplies. Will you do that for me?" If they say "no", you can either bail and find a new doctor or ask more questions to find out why they have a problem with that. (I made an assumption there that your insurance requires you to see a sleep doctor every six months in order to have them pay for your masks and other CPAP supplies.)

If you have a copy of your CPAP prescription from two years ago (or the most recent prescription that the doctor wrote), you would also have the option of just using that prescription to purchase masks online and skip seeing a sleep doctor.

While I was reading what you wrote, I found myself wondering why the doctor reacted the way that he did. I'd guess that he may have a very rigid personality and require that patients do things his way. That would mean that a suggestion from you that you need a bilevel machine would not be welcomed.

The other thought that I had was that he has some sort of financial arrangement going on with the DME and wants you to get a machine from them.

On a positive note, you have everything you need to get good CPAP therapy, no matter what route you eventually end up taking to get it. Either your current doctor will come around, or you'll find a better one, or you'll go it on your own.

It's great to hear that the bilevel machine is working so well for you.
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#5
Clearly, if you already feel you haven't been listened to, continue the therapy that is working for you and find a new doc.

I would like things to be a bit different with my current sleep clinic, but I think much of my problem was the wait for everything. I only had to wait a week for an appointment with the doc. It was the sleep studies that took weeks in between - so much time, in fact, that I went out and bought a used machine and set it up with suggestions here. It's true, you won't get the same therapy without titration (insert rolling eyes). My guess is that the doctor does not order auto machines for his patients - only straight pressure. Another reason to run elsewhere - auto units work SO MUCH BETTER for most patients than straight pressure. That's why they are popular.

Now, in my case, I don't have simple apnea, so a titration was really the only option at the beginning. The tech was actually excited to know that I was successful with my used machine and knowledge because we were better able to select masks that might work for me. Since then, I mostly manage everything myself and after adding an O2 monitor, I have as much data as the doc would have, if not more. Now, just working on RLS.
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#6
Hi roudabushmc,
WELCOME! to the forum.!
If I'm not mistaken, you can set up your Auto-bi-PAP machine as an auto-CPAP machine if you wanted to, hang in there for other ideas on this.
If you are doing well with what you are doing now, keep going. I hope you can find a new sleep doc so that you can have better consultations about your treatment.
Good luck to you with your CPAP therapy this time around.
trish6hundred
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#7
(08-11-2016, 11:34 AM)green wings Wrote: If you have a copy of your CPAP prescription from two years ago (or the most recent prescription that the doctor wrote), you would also have the option of just using that prescription to purchase masks online and skip seeing a sleep doctor.

I keep seeing this on the board, but why does it seem like I can buy masks on Amazon without prescription?
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#8
Amazon is free to conduct their business at their own risk.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
(08-11-2016, 02:35 PM)justMongo Wrote: Amazon is free to conduct their business at their own risk.

Ahhh.. but apparently they have friends in high places in a place that's called Washington, D.C.

And for those uninitiated, the D.C. part of the name, (without regard to any political associations) stands for District of Corruption! Annoyed-and-disappointed
Warning: Eating chocolate may cause your clothes to shrink!
[Image: ry6XtE9.gif] <---- That's ME!
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#10
(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.
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