Introduced my doctor to Sleepyhead

[QueSera]

I went to my sleep doctor today, expecting to argue about ... well, everything. My last visit with her was not encouraging. She was wonderful today! She looked over my Sleepyhead daily printouts, fascinated, said she had never seen it before. She discussed and answered every question I had about my sleep study reports and gave me a clear plan of action. She asked who had adjusted the pressure on my machine; when I said that I did, she said that she didn't know how to do that! I taught her how to access the clinician's menu and make changes. This visit was a real eye-opener for both of us.

Without this forum, I would be, to be a honest, a mess. I really can't thank you all enough for the information and the support, and for SLEEPYHEAD!

[lilly747]

+1

A Great Post.....

[Wulfman...]

What did you and your doctor decide about this situation?

viewtopic/t111137/viewtopic.php?f=1&t=1 ... 2#p1066162


Den

.

[QueSera]

Den, you are on top of things! She wants me to do APAP at 6/12 for at least two weeks and keep monitoring my results on SH. If I still see too many CAs at that point, I should switch it to CPAP, letting the machine set the middle point between 6 and 12, and try that for at least two weeks. If I don't see what I want to see - AHI less than 5 pretty consistently - call her and let her know, and well go from there.

I think the most important thing I did was that I went into that appointment prepared. If you hadn't asked me those questions, I doubt I would have been.

[Cardsfan]

It just shows you the importance of educating yourself. I can't believe a sleep dr doesn't know these things about how operate a machine and what Sleepyhead is.

[QueSera]

I thought so, too. I think it's a sign of how compartmentalized everything has become, and the importance of taking control of one's medical care. She said that the techs at the sleep center know all the machines well. I suppose if she wants someone to get a pressure change, she has it done remotely, since the machine isn't in front of her and most patients don't know how to do it anyway.

Also, I saw the "report" my DME had sent her with the data from my machine, and it was all summarized, a list of averages (of AHI and one or two other things); it was mostly about compliance, not health. She said that I am the only patient she has who has ever come in with the kind of information I had. (And the volume, I bet. )

I think what's needed is a CPAP for Dummies-type handbook, or maybe a few classes offered at hospitals. The first thing I would tell people in such a class is about this forum. I've looked and haven't found anything at all, and I live in a densely populated area with excellent availability of medical care. Has anybody ever heard of such a thing?

[QueSera]

BTW, I don't mean to imply that the information isn't here at the forum; of course it is. But newbies need to find their way here to get it, and it probably takes some a while, while others won't ever get here. There needs to be a pamphlet or a flyer that accompanies every diagnosis, a kind of what-to-do-next thing.

[amenite]

I went to my sleep doctor today, expecting to argue about ... well, everything. My last visit with her was not encouraging. She was wonderful today! She looked over my Sleepyhead daily printouts, fascinated, said she had never seen it before. She discussed and answered every question I had about my sleep study reports and gave me a clear plan of action. She asked who had adjusted the pressure on my machine; when I said that I did, she said that she didn't know how to do that! I taught her how to access the clinician's menu and make changes. This visit was a real eye-opener for both of us.

Without this forum, I would be, to be a honest, a mess. I really can't thank you all enough for the information and the support, and for SLEEPYHEAD!

You should send your doctor a bill for your services. I'm only half joking here. At the least you should get that visit gratis. I think of the time and effort Jedimark and others have put into creating SleepyHead from nothing and all the good it does for all of us, and it's provided at no charge. Then I look at some of these medical bills I have here and wonder how some of these providers sleep at night and it dawns on me - for some of them at least they clearly sleep very very well at night, on satin sheets, on very expensive mattresses.

[BlackSpinner]

It just shows you the importance of educating yourself. I can't believe a sleep dr doesn't know these things about how operate a machine and what Sleepyhead is.

A doctor does diagnosis. The day when doctors made their own medications is long gone. None of my mothers doctors knew anything about the equipment to provide palliative care. To put in a catheter, to operate a lift, how to actually physically lift a person, where to get a wheelchair, the soap that doesn't need rinsing, The mobile ultra sound equipment and all the other equipment. They don't analyze the output from an MRI or Ultra sound - they just read the write up by the specialist.
They don't need to know how to operate each different cpap machine any more then they need to operate the Xray machine or do blood tests.

[chunkyfrog]

When I showed Sleepyhead to my sleep doc, he geeked out like a little kid!
My 15 minute appointment went to 45, sorry about the folks scheduled right after me.

[Mudrock63]

BTW, I don't mean to imply that the information isn't here at the forum; of course it is. But newbies need to find their way here to get it, and it probably takes some a while, while others won't ever get here. There needs to be a pamphlet or a flyer that accompanies every diagnosis, a kind of what-to-do-next thing.

Totally agree. I wonder how many walk away from treatment from frustration and lack of information. I know I was exhausted when I stumbled, thankfully, on this forum.

My doc also geeked out when I showed her some Sleepyhead reports.

[Sir NoddinOff]

I did that a couple of years ago. I showed my Sleepyhead results to my then sleep doctor (I took my laptop in, I didn't print out the reports). I subsequently got a big ho-hum and some song and dance about how I should let him do thinking about my CPAP therapy. He said it in a nice way, of course, but I knew it was a big load of BS and that he wasn't a very understanding or capable doctor.

[chunkyfrog]

Agreed, SNO.
Nothing beats a good benchmark for which doctor is worth keeping.

[amenite]

I did that a couple of years ago. I showed my Sleepyhead results to my then sleep doctor (I took my laptop in, I didn't print out the reports). I subsequently got a big ho-hum and some song and dance about how I should let him do thinking about my CPAP therapy. He said it in a nice way, of course, but I knew it was a big load of BS and that he wasn't a very understanding or capable doctor.

I didn't even make that much effort. When the old sleep doctor told me they just looked at compliance data I made sure to grab a copy of my prescription on that visit and made it my last visit.

[QueSera]

And as it turned out for me, this was exactly the benchmark I needed my doctor to reach. I was very disappointed in my last visit, and I seriously expected yesterday to be my goodbye to her. I've been looking for a new doctor. But, as reported, she was interested in my data and process, and respected what I was doing.

I may have mentioned elsewhere, I have a variety of chronic conditions. This means I have a long list of doctors I see regularly. (I've joked in the past that I've seen a doctor in every field of specialization except a coroner.) But I do not stick with a doctor who doesn't treat me with respect and courtesy because, to paraphrase, I don't have time for that. I know that everyone doesn't have the same range of choices that I have due to my location, but a doctor who doesn't take a patient seriously is worse than useless.