Oof. This is really disheartening to hear. (someone alerted me to this thread as well as a few others) Really hope you don't mind me chiming in.
Upgraded my website and lost all contact information in the process.
I 100% remember you, in a good way!
Your APAP wasn't responding to these needs at all, so static pressure was utilized. We increased and increased.
The increasing was for what I call "stubborn airway". You (as happens for some people) weren't responding to increases in pressure. Very clear flattening of airflow waves prior to arousals. Obstruction is the airway itself. We didn't use EPR because on exhalation your airway would be allowed to collapse. (this will seem to be contradicted in just a minute) EPR of 3 we were going to not use unless we started to see CPAP induced central apneas or central hypopneas. Only to be used as a "poor mans bipap".
Bilevel is the go to in situations like yours. You don't have a bilevel, so we were working with what tools we have at our disposal. Exhaust everything.
It got to the point where I recommended you speak with your physician about getting a bilevel or getting one in an unconventional manner. You needed much higher inspiratory pressure, but a larger pressure support. EPR is generally very weak (PS of 3 max) where as PS of bilevel can be 4-10 or more. This huge pressure support if appropriate (considering co2 retention etc) can really open up your airway. EPR transitions are slow and weak when compared to a true bilevel that will hit the obstruction much harder on transition especially with a larger differential.
Everyone is so different in terms of where the obstruction is coming from and how pliable the tissue is. What is the level of cmH20 where CO2 is retained...lot of gray area. This train of thought is specific to you and your needs based on your airflow pattern.
Last correspondence was that a bilevel isn't in the budget.
I really truly believe all this was communicated face to face as I always take notes on what I'm thinking and read them off to people after the notes are made. I don't note things down that I didn't say. This has pretty much always been my process.
Looking at the screenshot that was provided and you can tell that instability of the airway. My recommendations still stand. It's just all part of the progression based on what I am seeing.
Also, very very sorry you thought for some reason that I'm a doctor. Definitely not a physician nor have I ever implied I am one at any point ever in my life. If you feel you were mislead or didn't get what you hoped out of our interactions, I am very sorry. Like everyone that I consult with, I celebrate the wins and take the losses personally. I'll continue to help you if you're still having problems. It's a puzzle to figure out.
The data says bilevel would be more appropriate for you after seeing how you respond to the very low pressures of 4-20 through the pressures we sampled.
All that said: I'm happy to refund you all of your money if that's what you would like.
and........Hi Pugsy!