[CPAP] Newbie looking for help/opinions please!

[buckrogers76]

Just had the call i was dreading from the hospital sleep department who's  care i am under. Long and short of it i got a bollocking for changing my settings and told that i should have called them to get them to change it. The nurse was saying its their equipment and the minimum pressure I've got it on is to high etc etc. I came down to my laptop whilst on the call to start citing my numbers I'm achieving on SH but i felt that it was falling on deaf ears!

The nurse is going to discuss with my consultant and i should be getting a call tomorrow. Im worried now that they might take the unit back or something like that. Do they even know what they are doing as she's talking about putting my min pressure down to 4-5. She said that leaks might be causing the spikes in pressure as the machine auto adjusts to compensate. However the SH data tells me all i need to know.

She also said that i would have been prescribed my original pressures for good reason , these were 4-17. A few days into treatment i got a call saying that i wasn't getting anywhere near 17 so it was lowered to 15!

Get the feeling that these nurses and sleep clinic workers don't appreciate joe bloggs self educating himself in order to get more from CPAP therapy , thats understandable as they spend a long time at college and uni in order to do these jobs.

Another thing one of the other nurses said to me at the start in relation to app results figures etc was forget all and that its how you feel that matters as these machines are not as clever as people think and record a lot of false data etc.

Anyway i'm confused now as they have access to all the data i have on SH , i'm now under 3 for AHI through my own changes made as advised on this forum by the helpful members.

Edit: they called again and the consultant is unhappy that i have made my own changes , however she is happy for my upper pressure to be left at 20 but wants my lower pressure lowered to 5. I'm guessing that all thats going to happen is my AHI is going to go back up and lots of disruption from the machine having to auto adjust up from 5 to 15+ through the night.

The nurse has said that I'm going to now do an overnight oxygen type test whilst wearing/using my CPAP and will also have to come into clinic to go through it all with the consultant. I feel a stern lecture coming my way!

Tell me what you think guys

Regards

Buck

[buckrogers76]

Just checked my machine and despite being told on the phone that my max would stay at 20 and the min at 5 the actual settings are 4-14

Cant wait for the brilliant results I'm now going to get from those pressures!

Buck

[Gideon]

Believe it or not I've seen several Titration Protocols that call for setting ANY APAP (Auto CPAP) to 4 - 20 presumable because they auto-adjust. We know that just doesn't happen.

I do see "Airplane mode" sometime in your future.

Keep in mind that the "Pros" know more than everyone else. You may have to play along for a while. That may mean calling them on a daily basis saying your therapy isn't working.

We can help you with the why's.

[buckrogers76]

Believe it or not I've seen several Titration Protocols that call for setting ANY APAP (Auto CPAP) to 4 - 20 presumable because they auto-adjust.  We know that just doesn't happen.  

I do see "Airplane mode" sometime in your future.

Keep in mind that the "Pros" know more than everyone else.  You may have to play along for a while.  That may mean calling them on a daily basis saying your therapy isn't working.  

We can help you with the why's.

Hi Fred

What i'm most annoyed at is that i just been lied to over the phone , the nurse said that my upper pressure would stay at 20 as agreed with the consultant and min lowered to 5 , yet when i checked the machine just now it's set at 4-14 which is more or less my original prescription.
Not looking forward to 30 plus mins a night spent in apnea!

Should i ring them up and ask why or am i going to rock the boat to much?

Regards

Buck

[Sleeprider]

It's pretty simple to let their settings go for a week then remind them they tripled your AHI and you feel like crap. At that point they either agree to change back to what you demonstrated will work, or you fire them.  It's damn inconvenient and kind of expensive, but you can get your own machine from Supplier #2 who ships internationally.

Just sayin' we know what happens for you at 4-14.  It's not pretty.  What does your "consultant" use as the basis for the prescription?  Wild ass guess?

[Gideon]

I know that you are upset. With them you will have to play along. After all they know better ;-)

You need time on there settings, then you call them and basically say you are feeling like crap and your AHI is up. Or you can do as SleepRider has suggested.
Do you have a way of firing them?

[buckrogers76]

It's pretty simple to let their settings go for a week then remind them they tripled your AHI and you feel like crap. At that point they either agree to change back to what you demonstrated will work, or you fire them.  It's damn inconvenient and kind of expensive, but you can get your own machine from Supplier #2 who ships internationally.

It's funny i went upstairs and now the settings are 5-20 as agreed on the phone in accordance with the consultants blessing! 

Wonder how that happened? if anybody from the clinic calls to say that you have changed the settings again my response will be simple.
I checked the machine and noticed that the pressure settings were 4-14 not the 5-20 we agreed , so i assumed there had been an oversite and changed them myself so they were as agreed!

Buck

p.s aeroplane mode would really rile them up!

[Gideon]

I think I'm getting Dave's Sarcastic notes here.

[buckrogers76]

I think I'm getting Dave's Sarcastic notes here.

Hi Fred

It's a little different here in the UK , i am receiving my treatment through the NHS ( national health service ) which is not private. Had it been private you have more of a leg to stand on as it's your money directly.

Am thinking that maybe i put the settings back at 4-14 and then call them back with the rubbish SH data and then i can query why is the pressure set at 4-14 when we agreed 5-20

Would this be a better course of action rather than playing naughty boy games with the man!

Buck

[Gideon]

They set it, just question the numbers that you are getting. "I was getting better numbers and I was feeling better when I was naughty, why?"