Sometimes It Takes a Doctor

I have to say that the information, advice and guidance I got here helped me work better in partnership with my doctor and clinic.

I understood much better what was going on, what to look for, and what to ask.

You guys helped me be a part of my own healthcare team.

And all for free!

pootsie wrote:I have to say that the information, advice and guidance I got here helped me work better in partnership with my doctor and clinic.

I understood much better what was going on, what to look for, and what to ask.

You guys helped me be a part of my own healthcare team.

And all for free!

This is the way I too would describe the benefits I received and continue to receive from cpaptalk.

After a terrible night in my cpap titration sleep study and horrible headaches the next day, I got repeated calls from the office manager and others "to come in and get set up with your machine." Because of what I learned here, I refused until I could get a copy of my report, which they claimed wouldn't be typed up for six weeks, but they got the report to me in two days when I refused to come in to get my machine. After studying the report and learning I had a serious case of central apnea and learning here about the machines to treat it, which I learned about on cpaptalk, I called back and asked if the machine I was supposed to pick up was a VPAP Adapt. "Oh no" said the person on the phone at the clinic, "You have to be on a regular CPAP machine first for at least ______ weeks and then we will see." I asked for an appointment to talk to the doctor and was told I couldn't see him until I had been on the machine for six weeks! But, based on what I learned here about how that would have seriously aggravated my central apneas and would have probably been intolerable for me, I escalated the conversation to my sleep doctor by letter, since the staff wouldn't give me an appointment with him, making the points by letter that I had learned on cpaptalk. He called and complimented me on the knowledge I had acquired here, and had me re-tested and approved for the VPAP Adapt. That never would have happened if it hadn't been for cpaptalk. I would have instead suffered on a machine that would have made me worse and which I probably would have refused to use and would have quickly become non-compliant.

Instead, thanks to cpaptalk, I have been compliant and had wonderful therapy for a year and a half, and my doctor and everyone at the sleep study clinic now treats me with kindness, patience and respect.

Best wishes, Nate

In my situation I have been on the machine for just over 3 years.... I have yet to hear a word from the DME or the sleep doc... do you wonder why I'm still here... this is the ONLY help I have ever received concerning my sleep apnea. I figured I would have heard from the doc or the dme a couple of weeks or months after starting this journey with "how are you doing, have any problems or questions", but alas....nothing. If it wasn't for the wonderful group here I would have never made it in one piece, I'm sure I would be worm fodder by now The folks here are super... yes sometimes you need to sift through the advice to get exactly what you need, but you WILL get help. From some of the stories and rants I have read over the 3 + years, patients sometimes do get the help they need from their sleep team but usually the help comes from right here on the forum.
Again, I have to thank all the good folks here.... as I've said before (many times) I WOULD HAVE NEVER MADE IT WITHOUT YOU... and for that "LOVE YOU"!
Cheers good friends.
Nan

The comments made in the original post would be valid *IF* more people reported experiences with doctors that showed more than a miniscule amount of knowledge & interest in sleep apnea and it's treatment. So many people report their doctors have a "Here's the machine. Go use it and I'll see you in a year" attitude and got zero assistance when they had problems.

That says that the number of doctors that can be used when "sometimes it takes a doctor" are so few and far between. And by that conclusion, the post is a little insulting to this forum and the people that give so much of their time and themselves to help those that have no access to doctors that give a damn.

NateS wrote:

pootsie wrote:I have to say that the information, advice and guidance I got here helped me work better in partnership with my doctor and clinic.

I understood much better what was going on, what to look for, and what to ask.

You guys helped me be a part of my own healthcare team.

And all for free!

This is the way I too would describe the benefits I received and continue to receive from cpaptalk.

After a terrible night in my cpap titration sleep study and horrible headaches the next day, I got repeated calls from the office manager and others "to come in and get set up with your machine." Because of what I learned here, I refused until I could get a copy of my report, which they claimed wouldn't be typed up for six weeks, but they got the report to me in two days when I refused to come in to get my machine. After studying the report and learning I had a serious case of central apnea and learning here about the machines to treat it, which I learned about on cpaptalk, I called back and asked if the machine I was supposed to pick up was a VPAP Adapt. "Oh no" said the person on the phone at the clinic, "You have to be on a regular CPAP machine first for at least ______ weeks and then we will see." I asked for an appointment to talk to the doctor and was told I couldn't see him until I had been on the machine for six weeks! But, based on what I learned here about how that would have seriously aggravated my central apneas and would have probably been intolerable for me, I escalated the conversation to my sleep doctor by letter, since the staff wouldn't give me an appointment with him, making the points by letter that I had learned on cpaptalk. He called and complimented me on the knowledge I had acquired here, and had me re-tested and approved for the VPAP Adapt. That never would have happened if it hadn't been for cpaptalk. I would have instead suffered on a machine that would have made me worse and which I probably would have refused to use and would have quickly become non-compliant.

Instead, thanks to cpaptalk, I have been compliant and had wonderful therapy for a year and a half, and my doctor and everyone at the sleep study clinic now treats me with kindness, patience and respect.

Best wishes, Nate

Nice story Nate.
It's interesting how the medical professionals treats a patient when they realize the patient has done some homework.

Best wishes to you, too.

Den

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Sometimes It Takes a Doctor

Yes, this is correct. I need my doctor to write a prescription.

But, the law needs to be changed. The (How does DreamStalker say that?), on yeah, the corporatized (sp) fascist and monopolistic medicine cabal (?) needs to be busted up.

All should be free to buy CPAP machines without a doctor's permission.

SleepingUgly wrote:A doctor who has specialized knowledge, skill, experience, education, and training in sleep medicine and is conscientious, thorough, dedicated, and has lots of time to devote to helping his patients would be at least as good as the best we've got to offer on this forum. Unfortunately, just the "time to devote" part of the former sentence would knock out of the running every doctor I know. But in theory, a doctor could know everything people here know, and would have the medical expertise to understand it at a level (including its interaction with other illnesses) that none of us non-medical practitioners can. I definitely listen to what competent doctors have to say. Because I know a little bit about this field, I am in a better position than I once was to assess whether a doctor seems to be competent or not. But I don't believe in knowing nothing myself and leaving my fate solely in their hands.

Nice post. Adding little more to it that mostly a professional doctor is way more important then medicine as in such cases they mostly talk about this by the way that patient feels release about its problem and there minds distressed for some time.