PS [Pressure Support]

[LarryRapp]

Thanks.  No, I don't have any facial paralysis from the stroke.  I am on oxygen 3 liters.  I guess I need to tell the doc on Feb 12th that we have to get a better machine.  I know he is afraid of ASV's but that seems to be what is needed.  The CA's are awful.  Is there anything else?

[Sleeprider]

I would focus on your poor AHI results, and your poor sense of health. Request a titration for bilevel with backup rate (ASV) assuming you don't have congestive heart failure and LVEF less than 45%, you are not in the risk group identified by the SERVE-HF study, so there is not an identified risk that specifically applies to you. I think it would be worth getting your life back. At least get the titration so you know whether or not this may be a solution, then deal with the doctor's concerns and make your decision. One step at a time. Get the titration.

[LarryRapp]

Ok, I'll ask him for that.  I'll ask before my appt on Feb 12 since that is over a month away.  Thanks!

[SarcasticDave94]

Hi Larry,

If it helps any, basically the same info as Sleeprider has mentioned, but just wanted to add my personal experience to get the ASV: I was on the BiPAP with very bad results due to a high Central count. I needed to switch over to the ASV, which of course did happen eventually. I hammered the "how I felt" portion of the equation like crazy. I just told the docs the truth, I feel worse because of the BiPAP. I felt more tired, more headaches, more etc. Less sleep, less rest, etc.

I felt better if I didn't use the BiPAP. I attacked it this way because the doc really didn't care about numbers in my estimation. So I focused on my therapy is making me worse. They finally paid attention, and I was on the way to the ASV. Note it did require an urgent need office visit, but that paid off very well too.

Keep us posted on progress and best wishes on making them understand you need better treatment and results.

[LarryRapp]

Thanks, Dave, I called the doc's nurse but naturally got a message.  I told her to call me back.  I'm 77 now and may not live longer, but I take Sleeprider's message to heart and I do want to live longer so I want to have the titration.  I just got my wife to agree.  Now I just have to get it scheduled.  Oh well...

[SarcasticDave94]

You're welcome. Congrats in what sounds like some kind of progress. Here's to a great day.

[Sleeprider]

Thanks, Dave, I called the doc's nurse but naturally got a message.  I told her to call me back.  I'm 77 now and may not live longer, but I take Sleeprider's message to heart and I do want to live longer so I want to have the titration.  I just got my wife to agree.  Now I just have to get it scheduled.  Oh well...

At 77 you potentially have much more life ahead. Your comment perfectly describes why you need the titration.  You should not feel like you are at "death's door".  You can feel rested and energized, and it's clear what a drag your current therapy is on that goal.

[LarryRapp]

Thank you, my friend.  I still haven't heard back but tomorrow's another day.  I'm pretty sure I will get it, but if I don't I'm hopeful that I can still buy it and we can figure out how to set it!

[LarryRapp]

Well, they just called me.  I am having the sleep study done on the 16th - WOW!  The doc wants me to start on CPAP and then try ASV if necessary.  I will have them send me a copy.

I told them that last night I had 41 CA's.  He said that wasn't so high as he looks at how many per hour.  Well, we'll see.  I told him the most important thing is how I feel (crappy).  If you look at Overview, you can see that everything was pretty fine until late November when things went to hell.  It's even obvious to me that we have to do something!

[SarcasticDave94]

you're progressing...what I mean by that is you're getting their attention by telling them you're not being treated as is. Keep squeaking.