Manhattanite
Distinguished member
- Joined
- May 10, 2015
- Messages
- 209
- Reason
- Lost a loved one
- Diagnosis
- 05/2015
- Country
- US
- State
- NY
- City
- New York
Yesterday we had our quarterly visit with our neuro. My sister in law and I spoke to him for a brief moment without my PALS being present. The neuro said that my PALS "will not live to see the end of the year." His FVC was at 20% three months ago, it was not even tested this visit. I said to my neuro, "I thought that he could go on indefinitely with proper PEG nutrition and use of the non-invasive ventilator until he got an infection or something." He said no, his lungs would fail even while on the Trilogy.
It is always shocking to hear it put like this -especially since he said it so directly- and it was a wake up call. Because my PALS was doing so well on hospice at home (gaining weight, avoiding falls, etc.), I thought we had stabilized the condition but I was only fooling myself - it is evident the neuro saw further progress and he even directed me to start using morphine when I notice my PALS is hungry for air. I am devastated and trying to brace myself for what is coming.
It is always shocking to hear it put like this -especially since he said it so directly- and it was a wake up call. Because my PALS was doing so well on hospice at home (gaining weight, avoiding falls, etc.), I thought we had stabilized the condition but I was only fooling myself - it is evident the neuro saw further progress and he even directed me to start using morphine when I notice my PALS is hungry for air. I am devastated and trying to brace myself for what is coming.