self syled therapy and the system collide

Hi All

big meeting next week - very important to me. The phone call I made the other week suggests there's going to be a few conflicts.

I'm from the UK and for one thing I bought and imported my machine from the USA - then I changed the settings, I still change them now searching for my perfect setup. The pillow mask is far from perfect. But I manage.

This is an appointment I have waited ages for - supported therapy in the UK - before this, it was only me and my hard to control mask. So one thing I'll definitely get out of it is a new mask - I am going for a FFM because this hedges my bets. I keep the pillow mask as it's mine. On the phone the therapists said "bring the machine " and "we'll have to switch it for one of ours of similar class" - obviously I keep my old machine, as again, it's mine.

Two things leap out here - 1. a free backup machine, this is amazing news , peace of mind I could not possibly afford otherwise. 2. they will want to do traditional locked down "prescribe a pressure" therapy. I'm not up for this because I work full time and I'm also not up for suffering loads of bad nights if they get it wrong.

.. so I can trawl the net for the providers guide, if it's exactly the same, I don't even need to do that, or I can ask one of you lovely people for where to get the guide etc...... and here we go again

appreciate you're mostly USA - this (joining US forum) was a conscious decision on my part because I happen to think the US is far more advanced in its attitudes to sleep apnoea - and this is probably due to sheer volumes of people who suffer it over there. Whereas I come from a small country and not enough people are getting plagued by this terrible illness for it to shake the money boxes of many institutions. People here go undiagnosed for years, and suffer in silence. I had to diagnose myself and then fight to get in the system - performance at work ( or lack thereof) eventually drove me to look at why this was the case i.e. why would an intelligent human being be so mentally slow and acting like an old man..

but if anyone has had any experience like this where they have to bring two totally different ideas of therapy together, I'd appreciate a reply - what was your experience. Did you fight with a therapist over your therapy or is there understanding out there for those that are not prepared to be miserable 24/7 and wait in a queue until the system is ready for them ?

all the best
Andy

Even if they "lock down" the settings on your machine, it's easy enough to change them on your own. So just nod your head and smile at their recommendations, take the new mask and new machine, and continue to do what works best for you. Even in the UK, I assure you there are no CPAP police who will come to your home and arrest you for changing your settings.

They may not be happy if they check your data (and that's assuming the machine they provide you will even have data!), but so what?

I think it's hard to judge based on a short phone call. If you have purchased good therapy for you and you just need a mask or something, great, tell them that you're quite happy with your machine. The other option is like you said, you can take their machine (as long as they don't take yours) and you can try it. If it doesn't work, use yours. Not a big deal.

If I felt like you, I would explain to them that you wanted to explore the care style in the US and it is - "working well" or "working well except..." or? I would just be honest. I would also expect that they would want you to follow their regimine, including their machine, their settings. I would explain what experiments you've done, how they have worked for you and tell them that you don't want to redo the process again. Frankly, this is what I'm going to tell my new doctor. Here's where I've been, this has worked, this hasn't, need help in this way.

Apneaboard.com - follow the dots and find your clinician's manual.

Here is a link for the manuals at the Apnea Board, scroll down for the manuals. If you get a new type machine it will probably be in section 3. http://www.apneaboard.com/adjust-cpap-p ... tup-manual

thank you all, this is amazing!

I'm compliant after doing it my own way - I tried before that, their way, and fell flat, and then had a couple of years of bad sleep! It always disturbed me that if I so chose I could go out there right now and jump off a cliff..but the manual... no no he's an adult, don't trust him with THAT!

all the best
Andy