Assessing Clinical Menu on CPAP / BIPAP Units

[DreamLady]

The only thing I want to add to what everyone else has said is this.

Your attitude mirrors that of many sleep professionals and I find it condescending. It is this attitude that drives most of us HERE in the first place. IF our sleep professionals would discuss our condition with us logically and take the time to explain our therapy thoroughly, PERHAPS we would have the confidence and trust in them to seek out their advice. Oh, wait! I have done that, and found the answers never quite answered the question that was asked!!! There are many stories here of people who were told "you have apnea" and were handed a machine and mask and basically thrown out in the cold!

I have never even set eyes on the sleep Doctor who wrote my prescription, and the DME RT does not know as much about sleep apnea as she should for the role that she is supposed to be playing in my therapy. Interestingly, there are many DMEs who seem to think the correct way to fit nasal pillows is to stuff the cones all the way into the nares! Patients don't know the difference until they come here to find out how to fix their sore nose! There are a thousand stories here from patients whose "clinicians" didn't know much more than how to access the clinical menu, and the PATIENT had to show him/her how to change something.

When I started therapy I decided I wanted a second machine to leave at my daughter's house so I don't have to schlep a machine across country when I visit 6 times a year. The sleep center was of no assistance whatsoever. I came here and got GREAT advice on what to look for and ended up with an S9 Elite that I purchased out of pocket from my DME. I like this machine so much I use it nightly (at the PRESCRIBED pressure) and have relegated the S8 Escape Auto as my 'backup' machine. Guess what? When I sent them the data, the sleep center didn't even notice (or care about) the change in machine! When it was time to review my data, I took in a printout of my therapy for 30 days for a consultation, and the PA did not look past the compliance data. When I pointed out the existence of the other 30+ pages of data, she was most impressed and complimented me on my dedication to understanding my therapy and said she wished ALL patients would take as much interest in their therapy and perhaps that would increase compliance rates. She also said she didn't even know you could get such advanced data from anything other than a titration machine!

If the "clinicians" were as knowledgeable and helpful as you believe them to be, your points might have more validity.

[mayondair]

Ditto Dream Lady. I will only add that some MDs and DMEs seem to be more interested in insurance payments than the welfare of their patients. That's how I wound up here, and I couldnt have made CPAP work without this forum.

[Madalot]

Ditto Dream Lady. I will only add that some MDs and DMEs seem to be more interested in insurance payments than the welfare of their patients. That's how I wound up here, and I couldnt have made CPAP work without this forum.

I agree with you both (and everyone else too). In some ways, my DME and RT were great, but on some fronts, they didn't help me at all. When I began noticing problems on the bipap, my RT had no clue what to look at and when she didn't know what to do, she basically blew me off and sent me home. When I kept reporting the problem, I was told that I must have been asleep, despite my insistence that I was sitting up, awake, watching Roseanne. When I finally got the DME owner to really look at the problem, he insisted that I was holding my breath or intentionally breathing shallow so the bipap wouldn't switch to the inhale pressure. Because my husband was there and got in their face saying "she's NOT holding her breath or trying to breathe shallow -- this is her REGULAR breathing!!" they finally took it seriously, with the owner turning pale when he realized the TRUTH about what was going on and HAD been going on for weeks.

Does this make the DME or RT totally incompetent? No, but what they thought to be right and truth was not at that moment for me. They LEARNED something from me -- not to disregard a patient's complaints simply because you think you know more than they do.

As to the OP, I welcome your participation on this forum. I'm sure there's a lot you can contribute here. But please don't think that everything you know and have learned is the absolute right thing or truth for everyone. There's an awful lot of kind, caring and compassionate people here and a lot of really SMART people. Just because they're not RT's doesn't mean that don't know what they're talking about.

I really believe that if not for this forum, I will still be using a bipap machine that wasn't working for me -- or I'd possibly be dead.