Ventilator Use Question
Question: when should I start using the ventilator during the day?
Data: Dec 2016 FVC 60%, and TLV 2.9 liters
Subjective: the past month I had to start napping on the ventilator, not just at night. The past week I gave up eating a bowl of puree for lunch and dinner and just have it through the MIC-key, it was exhausting to eat it all. My two naps during the day have gone from one hour to two or more hours, despite using the ventilator.
The next Pulmonologist appointment is June. He is not experienced in ALS, but he is in town and the ALS pulmonary doctors are all out of town and it's too tiring to do the traveling.
I am not excited about wearing a mask during the day, and studies have shown more rapid decline in lung function with ventilator use.