looking for feedback

[sleepma]

Hello,

I work for a sleep center in CT and am looking for CPAP users feedback.

I help our patients with cpap problems all day, and am interested in hearing what CPAP users experience has their problems.

I'd like to put together a sleep discussion group, but would need some topics for it.

Any information would be helpful, and if I could answer any questions I'd be happy to!

Thank You,

Sleep MA

[robysue]

I work for a sleep center in CT and am looking for CPAP users feedback.

I help our patients with cpap problems all day, and am interested in hearing what CPAP users experience has their problems.

I'd like to put together a sleep discussion group, but would need some topics for it.

Spend some time here and you'll get a good sense of what kind of common problems new PAPers have. You'll also get a sense of problems that we've faced that are not exactly common, but are also not so uncommon as to be rare. You'll also get a sense that many, many of us did NOT get any useful help from our sleep docs or our DMEs on fixing those problems. So your ideas of a sleep discussion group for patients is a good idea.

Potential topics I can think of right off the top of my head:

• Some real information on what OSA is that goes beyond, "Your airway collapses n times an hour." Newbies are constantly looking for information about what actually causes their OSA---in the sense that they already know the problem is that their airway collapses, but they want to know why the airway collapses. You obviously can't tell each patient in a discussion group what causes their specific problem, but a run down on the various anatomical problems known to be factors would be useful. It helps to understand the problem can be caused by things like an over small airway, a long palatte, a tongue that is too large, etc.
• A brief run down of some of the consequences of untreated OSA. When we get the diagnosis, we're often given a list, but sometimes its vague. Or focused on things we don't have. It's worth pointing out too, that the connection between untreated OSA and weight gain is bidirectional: Some people gain the excess weight after developing OSA and having OSA-related metabolic changes; others develop OSA after gaining substantial amounts of weight.
• Masks. Don't just discuss the different kinds. Try to provide the new PAPers with a chance to handle them and if possible try them on. Discuss things that affect mask comfort. How to properly fit a mask----not too tight, but not too lose is a hard concept for many newbies to really understand. How to tell when a mask is just not working out for you and how to decide whether to try a new mask of the same sort or a different sort.
• Leaks. What they are, how to measure them with the aid of a full efficacy data machine (make sure ALL your patients are set up with full efficacy data machines). Mouth breathing is one form of leaks, but so are leaks caused by a mask that is adjusted wrong or a mask that is simply the wrong size. Along with leaks, it's worth talking about mask liners and how they can help with leaks as well as the more common notion of "try a chinstrap."
• Getting to sleep. A lot of newbies face real problems during the first few weeks to the first few months simply getting to sleep with a six foot hose attached to their nose. Problems can be caused by any number of things, but all too often, when we tell a sleep doc, "I can't get to sleep," the response is simply to keep trying harder.
• Aerophagia. What it is and how to address it. It's also important to tell newbies that they should NOT suffer significant tummy pain just because they're using a CPAP and that if their aerophagia is painful enough to wake them up at night, it is reasonable to call the sleep doc's office and report the problem.
• When to call for help. Many newbies are very reluctant to call their sleep doc's office because they already know that it's tough to get an appointment and they don't want to be labeled a "troublesome patient." Providing guidelines beyong "call us if you have problems or questions" is really necessary.
• Reasonable expectations. Many newbies expect a miracle cure for their daytime sleepiness and fatigue. And when they wake up feeling even worse after the first few relatively sleepless nights, they're quick to assume that the PAP is just not going to work for them. And that leads to giving up way, way too early. It's worth pointing out to newbies that most people do go through a few weeks to a couple of months of learning how to sleep with the dang alien attached to the face. And that you're not likely to feel better until after you learn how to sleep with the machine. At the same time, newbies need to be told what to do if they're still feeling no subjective improvement after three to six months of therapy.

[zoocrewphoto]

I high recommend using a cpap yourself for at least a week, better yet, meet compliance for a month. That will help you understand what new users are going through.

Check the sticky topics at the top. Help people to understand what sleep apnea really is, how important it it is, and really help them to be successful. Ramp is often NOT comfortable unless started at 6 or higher. And many new users are looking for any excuse to quit. Try you best to help them succeed.

[cpierc01]

Should be a requirement that the Sleep techs are required to do compliance for a month to see what it is like in order to actually discuss this with their patients.

[Guest]

Thank you all for this useful information, I will make sure to post when we finally have a discussion group scheduled.

I have used a CPAP before, not for a week, but I have trialed it in the office when I was first hired.

Please continue to post any questions/concerns!

Thank you!

[robysue]

I have used a CPAP before, not for a week, but I have trialed it in the office when I was first hired.

Trialing a CPAP for a few minutes or an hour or so in an office setting is not at all like trying to get to sleep with this alien on your face and knowing that you're supposed to keep it on for the next 7-8 hours---if you ever succeed in falling asleep in the first place ....

[zoocrewphoto]

Thank you all for this useful information, I will make sure to post when we finally have a discussion group scheduled.

I have used a CPAP before, not for a week, but I have trialed it in the office when I was first hired.

Please continue to post any questions/concerns!

Thank you!

It is completely different when you have to fall asleep, stay asleep, roll over, etc. And what pressure? Have you tried it at 10? 15? 20?

How about spending an hour at pressure of 4? How comfortable was it?

How many different masks have you tried?

Have you experienced leaks, mask farting, aerophagia, dry mouth, sores from the mask, etc?

These are the things that new people deal with and most dme people and doctors have no clue about.

Ever sneeze in a full face mask? Have a coughing spasm? Drool? Nose itch?

[Rob108]

Guest wrote:
I have used a CPAP before, not for a week, but I have trialed it in the office when I was first hired.

You can't even "test drive" a mask in that amount of time much less deal with everything else

[zoocrewphoto]

Guest wrote:
I have used a CPAP before, not for a week, but I have trialed it in the office when I was first hired.

You can't even "test drive" a mask in that amount of time much less deal with everything else

And I forgot to add. You need to experience these problems when you are completely exhausted, desperately need sleep, AND you are very tempted to throw it across the room.

I had the right mask to start off with, but I had so much trouble getting it fit correctly that I spent a lot of time in the middle of the night swearing at it. My DME refused to help me with the solution (order smaller head gear), so I switched DMEs. What an improvement!

[chunkyfrog]

Walk a mile in my shoes--don't just try them on and stand in front of the mirror.

[49er]

Hello,

I work for a sleep center in CT and am looking for CPAP users feedback.

I help our patients with cpap problems all day, and am interested in hearing what CPAP users experience has their problems.

I'd like to put together a sleep discussion group, but would need some topics for it.

Any information would be helpful, and if I could answer any questions I'd be happy to!

Thank You,

Sleep MA

Sleep MA,

I don't know what your position is but as one who has had a horrific adjustment to pap therapy for nearly 2 years, my advice would be to really listen to what your patients say. Don't just try to fit their answers to your preconceived ideas of what you think the problem is. Really try to be a detective when someone presents a problem, particular someone who has been struggling for quite awhile.

On a related note, as I was reading the comments for the book, "When Doctor's Don't Listen", I read a comment by a doctor who thought he was a good listener until he read this book and realized he was still trying to put his patients into a box. Please don't do that to the people you are working with.

I also greatly second the advice to trial a machine and mask for a month so you really get an idea of what your patients experience. For example, you need to know what it is like when you know you have to sleep due to a meeting with your boss the next day and your mask wakes you up with leaks after an hour of sleep. And you need to find out what it is like when you can't get a mask to stop leaking and you need to get back to sleep.

Since you don't have apnea, obviously, you can ditch the mask. But for those of us who do, it is a hellish choice.

Thanks for reaching out. I wish more professionals like yourself would do this.

49er