adozi
Distinguished member
- Joined
- Dec 28, 2011
- Messages
- 233
- Reason
- PALS
- Diagnosis
- 03/2012
- Country
- US
- State
- KY
- City
- Louisville
I'm thinking about this, before the vent. The respiratory therapist at ALS clinic recommended it as an easier way to suction and a step towards the eventual vent, so my family can learn to care for the trach first and then the vent. Has anyone heard of this? I'm all about being practical and proactive, but i had a consult with the ENT, and She wants to put me under. I had my peg tube put in two years ago this August, because my FVC was in the 40s. My intention was to have no more surgery that requires being put under. I'm not sure the surgeon has any experience with ALS. She didn't ask about FVC, she just looked at me, saw i look normal, and that i wasn't breathing hard, and said that everyone would be more comfortable if i was out. I'm definitely going to email my ALS Doctor about this, but i wanted to vent and see what you all think. I think i heard that Hawking has a vent but doesn't use it, so he probably has a trache.