repost of Jeff's response to Gerry, a patient who was at his wit's end with the medical system:

"If the doc gave Gerry the diagnosis, the doc did his job. In my opinion, few sleep docs have the time, the patience, or the emotional makeup to be able to show much empathy. Many of them are like cops that way. They love people, but they have a job to do, and it is more important they do their job well than that we like the way they do their job. Once they've done their part in saving one life, they move onto to the next life to save--kind of like firemen. Sleep specialists have a lot of fires to put out these days.

Few people make it through the first few nights with the mask on all night. It takes baby steps. Many wear it for a few hours the first night, wear it for more hours the next night, until eventually they can make it all night with the mask.

The person who delivers equipment is the equipment delivery person, rarely an actual RT. They get beat up on verbally. So I try to be nice to them. And I don't expect them to hold my hand through the whole process. We've got Sleepguide and other communities for that, to do that for each other.

There are ways to make the therapy work. It takes some time and effort, but it can be done in virtually every instance, with a few extremely rare exceptions.

Here is my "tough love" statement: Giving up because we don't feel like we were treated well is counter-productive. I don't care if the pharmacist hands me my pills nicely or throws the bag at me from across the store -- if those pills are going to save my life, I'm going to take them. I don't say to myslef "I'll show them--I just won't take those pills!" No, I take the pills anyway, and live.

That CPAP machine may be the pill that will save Gerry's life if he has 71 events an hour. I understand discouragement. I've been there. I understand depression. Been in that ballpark, too. Sometimes it takes a little tough love for a friend to say: "What? Are you out of your mind? JUST USE THE MACHINE! I love you too much to let you turn your back on the one piece of equipment that may very well give you your life back!"

That would be the kind of tough love I would give Gerry if he was my pal. But I'm not sure tough love always works so well when it comes from strangers. So I guess my post simply is what it is.

If we can precisely define exactly what our problem is using the machine, though, we then are halfway there to finding the solution to each obstacle one at a time until we get the larger problem solved. Sleeping and breathing are worth taking a methodical appoach with, since improving them can have a profound effect on a person's quality of life. CPAP can save lives, but only if it is used.

We have to generate our own success. No doc or delivery person is going to do that for us. Yes, they should be more helpful. But the satisfaction comes from outliving them. :-)

jeff"