I have had several bouts of aspiration. One exactly a year ago that required 3 weeks in the ICU with atrib fibulation and kidney failure,They had to put me on a ventilator, collapse my lungs and scrap the accumulation off my lungs.
It made it keenly aware to my wife that this whole journey was critical. My three grown kids found it too scary to acknowledge. I am making a great recovery,, Went on a cruise two months later to bring a sense of normalcy.
Unfortunately nothing is normal and rapidly degenerating. I live it each but it is easier for others to overlook.
The problem is I have repeat aspiration pneumonia and pull out of it. But I also have restrictive disease which they contribute to PSP although uts not common. My nerves are telling my lung muscles to work properly. A year ago my lung function was 68% and now 42% and declining 2% a month a month.
I have to cough to catch my breath not only to being oxygen in but to push CO2 out
The excess CO2 pains my muscles. I am expected to be on a home mask ventilator within the next few months. I have booked a trip to Paris since my wife loves Paris and again I want everything to be as normal as possible. If you stood next to me you'd know my breathing was labored but probably see me as normal
I am doing everything to live life. The problem is, except for the doctors I am walking alone. Everything isn't fine. I struggle just to breath. I want to be strong for others, but there is a part of me that wants to cry out.
I've gone on too long. I wont go on a fixed breathing tube where I cant talk or eat as I don't think that is living. But the route to dying by suffocation is real (don't want to get into death with dignity since that is all worked out and dying is nit an end for me.)
But it is a lonely place.