Graybeard
Distinguished member
- Joined
- Sep 24, 2014
- Messages
- 440
- Reason
- PALS
- Diagnosis
- 12/2013
- Country
- US
- State
- Ca
- City
- Surf City
Had bi-monthly meet with VA neuro today. She stressed I need to carry polst with me at all times. Suggested it be put on the back of my portable wheelchair. She also suggested the bipap for upright use, as I have to support my back with my arms to breathe well.
I told her I am considering a vent, but unsure. I asked, "At whet point do you get a vent, when the FVC is at ten percent, for example?"
She said, "You're probably already there."
That stunned me, as I was 50% at end of October. I can still do everything I could a year ago, although more limited, due to breathing. I am almost totally self-sufficient, except for things like heavy lifting. Wifey wasn't feeling good today, so I drove us the 20 minutes to the VA. After recuperating, she drove us home, and I took a three hour nap on the bipap.
I really feel I could have more life after vent.
Thoughts?
I told her I am considering a vent, but unsure. I asked, "At whet point do you get a vent, when the FVC is at ten percent, for example?"
She said, "You're probably already there."
That stunned me, as I was 50% at end of October. I can still do everything I could a year ago, although more limited, due to breathing. I am almost totally self-sufficient, except for things like heavy lifting. Wifey wasn't feeling good today, so I drove us the 20 minutes to the VA. After recuperating, she drove us home, and I took a three hour nap on the bipap.
I really feel I could have more life after vent.
Thoughts?