supportive, empowering doctors

My sleep study was a baseline study, no titration. After 2 to 3 months on mostly successful APAP, I succumbed to the hints of my PCP and her backup doctor, and agreement from the insurance company, that a titration sleep study would be useful. It was inconclusive, because I couldn't sleep. The doctor who wrote the sleep report phoned and asked me why I had the study done. I'm the first person he's ever found who has been on APAP and wanted a titration. The supportive part: in the sleep study, he wrote "I agree with her efforts to raise the low level of her autotitration machine from 4 to 5 or 6 cmH2O ... should she find that more comfortable." (By that time, I got a clinician's set up manual, available from ebay or a link and did my own setup.) The doc also wrote " It would also be useful if she were able to down load her own numbers, to be able to follow her response." (I was in the process of getting the card reader and software.) Way to go, doc!

Second supportive doctor, a pulmonologist: when seeing him for the first time, I brought in my EncorePro and MyEncore reports. He helped me interpret them, gave me useful info, no hassle about being empowered and on APAP.

If we educate our doctors through being informed and empowered xPAP users, we can raise the bar (quality standards) for effective care. Ditto for DMEs (a tougher case) and sleep techs.

Strong endorsement of your doctors.

I agree, they should all be that way, but............we should also be pro active about our own health care. Too many of us don't want to be bothered by details, and the effort of learning about our own health care.

Doctors have spent many years in learning what they know, and we come along and in a few months think we are a equal with them. I can certainly understand why they get the way that they are. Few are understanding enough to give us the chance.

The first step to being proactive is joining a group like this and taking charge of your own sleep problems.

The most important thing is to have people who are responsive to the problems you are having, whether it is the doctor, the sleep study technician, or the DME. Knowing every little detail is nice, but not always necessary if you can accurately describe what isn't working for you, and your DME is sympathetic.

It is probably good that I can't fiddle with EVERY setting on my CPAP, but I can't imagine not being able to adjust the basic things like starting pressure (for ramp) and humidifyer temperature. My nasal passages are such that I can't breath through my nose with less than 8 cm of pressure. (At 6 cm I feel like I am choking unless I flare my nostrils and breath really hard.) As a result, my current ramp setting starts at 9 cm, which is higher than some peoples' treatment pressure.

MartiniLover wrote:Doctors have spent many years in learning what they know, and we come along and in a few months think we are a equal with them. I can certainly understand why they get the way that they are. Few are understanding enough to give us the chance.

Umm . . ., you give physicians way too much credit, MartiniLover. A person in command of knowledge is usually glad to be able to display it. The fact of the matter, as many here have discovered, including now Mile High Sleeper, is that a few months of learning usually puts our knowledge of many things xPAP at a level well above that of our physicians. That's why Mile High Sleeper was communicating the way she was - to raise the level of knowledge of her physician in regards to things xPAP. (It does bring into question just who should be paying who though . . . )

Personally, I recommend dealing with physicians on an equal level, rather than putting them on "exalted" status. Treat 'em just as you would any other business relation, and as you'd want to be treated. [/soapbox]

Regards,
Bill

NightHawkeye wrote:Umm . . ., you give physicians way too much credit, MartiniLover. A person in command of knowledge is usually glad to be able to display it. The fact of the matter, as many here have discovered, including now Mile High Sleeper, is that a few months of learning usually puts our knowledge of many things xPAP at a level well above that of our physicians. That's why Mile High Sleeper was communicating the way she was - to raise the level of knowledge of her physician in regards to things xPAP. (It does bring into question just who should be paying who though . . . )

Personally, I recommend dealing with physicians on an equal level, rather than putting them on "exalted" status. Treat 'em just as you would any other business relation, and as you'd want to be treated. [/soapbox]

Bill,

You and I have had versions of this discussion before. I am the last person in the world to exalt physicians, jointly or severally. They range from poor to very, very good just like everyone else.

That said, your contention rejects the possibility that knowing everything there is to know about the algorithms and features of APAP machines is not an important bit of knowledge for a physician to command. Other than the guys who work for CPAP manufacturers (many of whom are physicians, BTW) most of the sleep doctors out there could certainly acquire more specialized knowledge of the equipment internals than they have. That fact does not imply that their knowledge is lacking, it may just as well be that their knowledge (the good ones I mean, not the half-assed ones) is sufficient to the task at hand.

Hundreds of thousands of people have been treated with CPAP for OSA over the past couple decades. Of the ones who are able to be compliant long term most of them have seen great improvements in their condition. Only a vanishingly small portion of those patients know 1/10 as much as you do about APAP machines or have a physicians who can compare and contrast algorithms and data-collection facilities of the various models like you can. Doesn't that argue that it is not in fact necessary to be able to produce MyEncore graphs on a daily basis in order to successfully treat a run-of-the-mill case of OSA?

I could quit my job and devote all day every day to learning about sleep disorders and xPAP equipment. Yet after years of study, there will still be things that a competent sleep doctor knows that I don't. It's definitely to my benefit to learn as much as I can afford to learn. It's also definitely beneficial to find a competent sleep doc and utilize whatever he might know that I don't. I want all the help I can get.

Brent Hutto wrote:That fact does not imply that their knowledge is lacking, it may just as well be that their knowledge (the good ones I mean, not the half-assed ones) is sufficient to the task at hand.

Wish I had time to go into more detail, Brent (but the forum may be glad that I don't ).

I would contend, however, that since only about 50% of CPAP users are compliant, knowledge of things CPAP by physicians is not up to the task at hand.

Regards,
Bill (with work stacking up from vacation)