I have a personal interest in this thread, so yes, I too vote for the discussion to continue here. My PALS/Dave was set up with an urgent appt. with the pulmonary lab today. They did a full work up including blood gases, spirometry readings in sitting and lying down. Then he was put into this upright chamber in a sitting position, where they went thru 5 cycles of "normal breaths" followed closely by 3, quick panting breaths. I don't remember what this chamber was called, but Dave was seated inside it with a breathing mask (looked just like the mouthpiece they used with spirometry) and then they close the door to the "cylinder". It was only about an hour after testing that the nurse practitioner called. Dave's CO2 levels are high and there is a marked decline in his ability to breath when lying down (yep, we knew that!) as well as a decline in the regular spirometer readings since April. So, long story short here, the nurse practitioner is placing a call in for an "urgent" sleep study. Dave had been scheduled in late September ........ Not sure if all of you had to do a sleep study (in a supervised lab environment) or not? I was thinking maybe Medicare required this to authorize the Trilogy.....
I will follow this thread with much interest. BlueandGold, I'm sorry you hate your Trilogy (and Soonerwife, sorry for your PALS too). The way the respiratory therapist that attends our ALS clinics described it to us was that the Trilogy has more settings, and of course you can set it for "forced inhalation" to help to stretch the lungs out, since many PALS just cannot breathe deeply any more. And, if I understood correctly, the Trilogy can be fine-tuned better to help replicate the slower more shallow breaths that most people with a normally functioning diaphragm and intercostal (ribcage) muscles take after falling asleep. I'm hoping that whatever machine Dave gets that he feels better overall from the increased oxygen saturation levels. He is tired all the time and his scary night-time breathing is freaking me out! I hope most of the PALS who get a BiPap or Trilogy see some improvement in their life.