New BiPAP ST user Vet with complex apnea

[SHatfield]

In an effort to be accurate and not put words in anyone's mouth, here is their last response ...

"Teamwork...
The mask shows ordered 3/24 so I expect the usual two weeks ETA pending any drastic changes due to Corona-19.
Also, I consulted with Adam Winters about your current concerns regarding your pressures, etc. Please see below for his comments.

"On Hatfield, his graphs do not look bad with a few hypopneas and apneas here and there. The device is overcalculating his AHI with RERA but the device does not know if awake or asleep so I don't put much into that. His EDS score was just 6 so I would never expect him to "feel" much of a change as he was not that symptomatic to begin with given that score. I generally tell folks that if they had low scores to begin it will take months for the curve to shift to where they may feel some better. On CPAP 10cm he is 100% compliant and I'm not worried about his AHI < 10 at this time."

He wants to leave you on the pressure that you are currently on as your numbers have improved. Also, you would not be a candidate for the BiPAP ASV machine.

I know that this may not be what you want to hear but it is common for some patients to not notice (significant) improvement in their daytime fatigue or other sleep issues or get their AHI "perfect".
I liken it to things like a patient that is on 3 different blood pressure medicines to control their blood pressure but their blood pressure continues to be elevated."


Dave, here's my exact reply.  It's meant for them to respond by either telling me, "Yes, you're not going to see much improvement" or explain exactly what benefit they think I'm getting, because I see none as of this date. I have not "asked" for an ASV ASV titration verbatim,  but they have already indicated I don't qualify in their opinion.  

"Thanks again Barb, I realize that y'all are much busier with what's going on.

I want to understanding what I think you are telling me.

Because the little questionnaire I filled out my first appointment showed a low score I probably won't notice much improvement?

My machine is misreading some of my readings because it doesn't know if I'm awake or not.

While my original score was low on that test, my sleep issues (lack of, rolling around, movements, etc.) does all of this mean that my sleep issues will not improve except after several months?

I'm not trying to be a pain, really I'm not, but I'm wondering what the benefit is of treatment if there is no improvement in my sleep issues?

Sorry for the rambling."

[SHatfield]

Hope springs eternal. Got a call from the doctor this morning. After a long, but good conversation they are giving me another machine to attach to my machine. This will in essence be a sleep study but synced to my bipap machine. So I'll have a sleep study while using my machine. This may help justify an ASV machine, which the doctor said was not out of the question.

[SarcasticDave94]

Sincere best wishes this will add ammo to justify an ASV. I'll add this, maybe keep a sleep and therapy diary to tell Doc DoLittle how you felt. Be safe and best of luck.

[SHatfield]

   

I tried a Resmed airfit F30 mask last night.  Not sure how it will work out.  On the plus side, I can put my glasses on and read or such with the mask on.  On the down side, my leaks in Oscar went off the charts.  It did take some adjusting. Possible because I have a mustache and a small beard.  And, it left a slight redness around it (from pressure, not allergic) this morning that dissipated.

I was using an airtouch F20, which I do like, but wanted to be able to put my glasses on without taking the mask off.  

Time will tell....

[SarcasticDave94]

As you no doubt feel, the chart isn't a pretty picture. A suggestion we do make to literally clean the OSCAR chart for those on Respironics is to turn off the VS2 flag. You may discover you have the VS flag off, but that one should be On where VS2 should be Off. This will not make you feel any better, but it's a better representation of the event chart.

I hope you will soon get onto that ResMed ASV. Keep us posted with comments and such.

On the mask and red marks, there's a mask liner product called RemmZzzs that may help. Supplier #1 sells them for $26.95 for a month's worth. Just one example at one supplier is all this is intended to be; you may want to shop around for best price. I included that one as it was easy to get to from our supplier list. There's also another product called Pad A Cheek AKA Supplier #31 that sells accessory mask cushioning cloth bits to cover the mask straps, etc. Just something to think about to enhance comfort.

[SHatfield]

Been a while ... obviously all dealing with the corona virus issue.

Not much has changed on my end.

Just as I thought I was going to get some help because the doctor agreed to sync my machine to another machine in order to look into my situation deeper (possibly resulting in a different machine.) the VA stopped all in person visits to the hospital (where I needed to go to get the second machine attached.)

So here I sit waiting for society to open up.

Hope everyone else is doing well.

[Sleeprider]

Sorry to hear no new progress. I had a cataract surgery postponed, so the quarantine is all a blur. Thanks for stopping back and giving an update.