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Permalink Reply by sleepycarol on September 6, 2009 at 10:05pm

It is interesting that sleep apnea is a relatively new field. It makes you wonder how many people simply went to sleep and never woke up, really had sleep apnea and with proper treatment could have lived longer.

I am just glad that I was proactive and am now feeling more like my old self. I still have days when I get pooped out and feel my age -- but I went for many years feeling old beyond my years due to fatigue.

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Permalink Reply by susan mccord on September 7, 2009 at 12:54am

Me too. Exact same deal. Complained for YEARS about fatigue bordering on exhaustion. Had tons of labs run, saw my MD. etc. It was finally my cardiologist who referred me for a neuro workup, sleep study resulted. Gotta bless the young, differently-trained docs coming along!! Although my new sleep doc has been in this area for many years, is probably in his 50's or so.

Susan McCord

Mike said:

I'm 100 percent all for anything that raises awareness of sleep apnea in a responsible, intelligent manner. I don't know anything about the WomenHeart organization other than what you just mentioned, but sounds great. Susan, I'm game to put some time and effort into this. Let talk about what I can do to move things forward.

susan mccord said:

Carol, ME TOO!! Since I know how MANY years I've had undiagnosed apnea symptoms now, I was thinking about the very same thing yesterday. I too, have had multiple major surgeries and 4 heart caths, in the midst of chronic c/o of chronic fatigue--no one ever mentioned apnea to me. When I think of all the times I've been under anesthetic for significant lengths of time and the sleeping that occurred after waking from that, it's a worrisome and also intriguing thing to contemplate. I wonder how many people who have "died on the table" or "didn't make it", etc. actually died from apnea......Jeez!! Makes me want to go stand at the door of every surgery suite I can find and stand there with a sign that says, "Do you have CPAP on board for this patient???" Can't imagine what it's gonna take to get the massive public education rolling......well, actually, yes I can. There's a powerful organization called WomenHeart, to which I belong, that began with 3 women with heart disease sitting around a kitchen table talking about how underdiagnosed women's heart disease is. Out of that discussion was born a HUGE network of women who are trained and educated re: same, and WH has a very structured program of selective training to get women with HD out into their own communities to do presentations, work local functions, etc. to promote early awareness and diagnosis of women's heart disease which presents VERY differently from men's and is frequently overlooked and/or ignored by many, many healthcare personnel, including MDs. Progress is being made now--what started out with big ideas and tiny steps, has become a national organization working in tandem with Mayo Clinic/Rochester!!!! Now, THAT kind of thing would be a magnificent arena for apnea patients. The format could be tweaked, if necessary, but I for one would LOVE to get on board for THAT kind of pro-active educational stance in regard to sleep apnea. Wondering now.....we should all give this some thought.

HEY MIKE!!!, what are your thoughts on this???????????? Or anyone else who may be reading this discussion.....whatta 'ya think? I think I'll start a Discussion in a couple of days about this very thing.....

Susan McCord

susan mccord said:

sleepycarol said:

Interesting concept. I do believe it would be beneficial. I was the one that requested a sleep study. I have had a few surgeries and shutter to think that no one ever suggested, nor screened me for sleep apnea. I often complained of severe fatigue and yet not one doctor suggested a sleep study.

By this type of screening in the hospital would be beneficial for thousands that were like me.

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Permalink Reply by sleepycarol on September 7, 2009 at 9:37am

Of course when it comes down to it money will be key factor.

It is a shame that everything revolves around money.

If it is cost effective it will be done, otherwise it is a great concept that won't get off the ground.

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Permalink Reply by Mike on September 7, 2009 at 12:43pm

I agree that a lot comes down to money. but as a general principle, and not specifically with respect to this hospital thing, i think that things become more "cost effective" and WILL HAPPEN the moment we patients decide to allocate more of our own discretionary income away from our houses, cars, knick-knacks, etc., and toward our own health. in other words, we patients have some power/control here in setting the agenda.... the power of the purse.

sleepycarol said:

Of course when it comes down to it money will be key factor.

It is a shame that everything revolves around money.

If it is cost effective it will be done, otherwise it is a great concept that won't get off the ground.

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Permalink Reply by sleepycarol on September 7, 2009 at 1:20pm

I live in Missouri and our unemployment rate is up and that isn't allowing for those that have exhausted their benefits and no longer are drawing them (they aren't included in the numbers).

Jobs are difficult to come by around here, even at some of the fast food industry, etc.

Many jobs have been lost due to the economic times and others have had to move to other less paying jobs within the same company. Others are on reduced work weeks, etc. I am sure this same thing is being played out across America.

Many do not have the luxury of having much discretionary funds to play with. We have kids that are coming to school with no school supplies this year, up from previous years. More are on free and reduced lunches. My son's school has almost 3/4 of its student population this year on free or reduced lunches. Ours hasn't gotten to that point, yet.

That is where my train of thought is going, more and more people are having a difficult time just paying for the bare necessaities let alone worry about their health care costs.

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