It has been such a busy time and I hadn't had a chance to post earlier.
He was diagnosed 3/23/2017 and progressed rapidly. By May 2017 he was on AVAPS, July 25th he got a feeding tube and by December he had pneumonia and after being intubated for a couple of weeks went home on the Trilogy. He...
My avaps was traded for a trilogy last week and I hate it. 6 bad nights of sleep. Feels like it's breathing too fast. Also hate hate the cycle of pulsating during exhale . Does this continue and I just have to get used to it. Does diameter of tube matter.
Resp. Therapist coming out tomorrow...
Last two weeks I have been sleepy or sleeping all the time.
I nap twice a day for 90 minutes. 8 hours at night.
I use the ventilator 20 hours daily on Passive AVAPS.
Spirometer testing last week was at 19% FVC.
Fluid and food intake is good through the MIC-KEY button.
No pain, just stiffness...
I finally started using my Trilogy and have it set up in my bedroom. I just can't get used to it. Actually, I've been sleeping fine without it flat on my back or turning on my right side. I don't wake up with headaches but I know I will eventually need it so I'm trying to get used to it...
The Trilogy machine was prescribed for me by my neurologist due to decrease in breathing while laying down. It is setup like a bipap machine for me. (no sleep study performed, just clinic PFTs)
My neurologist that I continue to see that was my third opinion does not agree with the Trilogy due...
Wifey was sick today, so I had to drive the 20 minutes to VA to be fitted for computer viewing glasses, and pulmo. Volunteers pushed me from free valet parking to appt.
I finally got to see a good doc at the pulmo clinic today. He asked me if I wanted a trach. I said I'm strongly considering...
Raraely used and in good condition. Belonged to our son who recently passed. Comes with a box of "cut to fit tubing" (several feet) along with 9 new masks, all with a new filter. Asking $1900 plus shipping. Will deliver for free in the Denver metro area. If not familiar, you will need a...
I was prescribed bipap a few months ago. Apria delivered a Respironics Bipap/AVAP machine which I only use in bipap mode. If I never get a trache, will I ever have use for the AVAP feature? In other words are any of you using AVAPS with a mask? Maybe I would breath even better in that mode?
My religious father wanted Mom home. I told him a year ago if she is at home, the house will start to resemble a hospital. Today, a man delivered oxygen for Mom, she is getting a AVAPS machine soon too. Dad looked at me and said "I hope you know what you are doing". He refuses to go to the Dr...
I read on this forum that a lot of pals prefer the trilogy machine. My mom's pulmonologist has recommended and AVAPs (?) machine. Does anyone have any information about this? Right now I am having an awful time getting her insurance to approve her for one. She had a daytime sleep study and a...