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Joe had sudden problems breathing this past week and went to the emergency room on the evening of July 3. After an all-night emergency work-up and stabilization there (he'd seen his internist that morning, with an all-clear verdict?) he was admitted to the ICU in the morning, where he has been ever since, and without much improvement that I can tell. He still coughs because there is stuff blocking his airway that he can't clear. He can't sleep because of it and yet no one has done a tracheostomy, which would seem to me to be the humane thing to do. It is not as if he is going to get better, after all, and it would make it possible to suction him and enable him both to breath and to feel better. Plus, he would be ready for a ventilator when he needs one.
For those who don't understand the terminology: a tracheostomy means the hole or stoma that is made in the trachea or windpipe -- hence, tracheo-stom-y -- so that a person can breath without using his mouth, nose or throat. You do not need to use a ventilator or mechanical breathing apparatus with a tracheostomy. You just need to keep the hole open so it doesn't scab over and close up or close over the airway it created. But you do need, usually, to have a tracheostomy for longterm ventilator usage.
Visited with Joe and talked with Dr J about Joe's lung function. It seems that they are considering putting Joe on a ventilator along with a tracheostomy, because his CO2 levels are so high and he is not exchanging gases well enough, though his oxygen levels are fine. The problem is, I guess, that you can die of too high CO2 as well as of too little oxygen. At this point it is a matter of keeping him alive long enough to let him fight off the pneumonia, with or without a ventilator. But if he goes on a ventilator he may never go off it, as an ALS patient usually becomes completely dependent on it once put on it for breathing assistance.
He could die. I have to put this bluntly, for my sake. This pneumonia could kill him, ventilator or no. It is the way many ALS patients die...and he knows this, which scares me. I know he does not want to die, that he was looking forward to so much living, was not ready for this to be even a possibility. And neither am I. I do not know if he is scared or simply too uncomfortable to be scared. But the discomfort is the feeling of not being able to breathe, which IS by definition the primitive and primal fear that represents death: If you don't breath you die; if you aren't breathing, are not a respiring creature, you are not alive. So the inability to breathe and the fear that results is by definition the fear of death, no? How can one be uncomfortable enough to look in horrible distress, yet not be scared of dying by suffocation? We ALL fear that! Even Joe...despite his disavowal of a fear of death in general.
Posted by pamwagg at July 5, 2007 10:39 AM
I am scared for him. If he dies -- this is not at all certain, just a possibility, and tonight things are looking better for now, as he is finally sleeping, with better numbers according to the nurse Karen talked with -- I want him to die without fear, and without pain, it's the least I can ask for a wonderful loving friend. Naturally it is not mine to grant, nor to ask, in the sense that there is no one else to grant my wish. Only fate and luck. But anyone who reads this: if you have a faith that sustains you and you believe in prayer, Joe needs it now. Please keep him in your prayers if you can? He is only 51 and a friend to everyone he has ever met. His one wish in life, aside from wanting to make a mark as an inventor and engineer, was to be known as a "good guy," the one who was a friend to all and an enemy of none. I'm sure he would befriend all of you if he met you!