Last night Shawn had a rough time. He couldn't keep his O2 sats out of the 80's. He was very SOB and his anxiety was through the roof. I hate to see him like that, fighting to breathe. I wanted him to have some relief.
It's horrible to watch him, I feel so helpless, useless.
During the day he went to the mall w/ Sara. He called me because he felt very SOB. Once he got into his truck he switched from the "stroller" to a tank and he immediately felt better.
Last night, he became convinced that his concentrator was not putting out O2. I hooked him up to a tank and once again he felt better, his O2 sats climbed into the 90's.
I hooked him up to the liquid O2 for the night and he slept soundly.
Shawn is very impressionable. When somebody tells him he is very sick, he declines. When I convince him that he is getting better or give him a vitamin and tell him it is a powerful bronchodilator, he breathes better and has better O2 sats.
There was a point in May where he was totally off of O2, maintaining sats in the 90's, out riding his motorcycle everyday, going into pulmonary rehab w/out his O2 on. His therapist would scold him each time. He used it during pulm rehab, but turned it off when he left. Shawn did this for almost two weeks. He felt great, looked great and had a great attitude.
He showed up for pulmonary rehab and his therapist hammered him. He told Shawn that he was doing damage to his heart and would cause heart failure. He was very serious and very menacing.
Shawn came home depressed. He told me what had happened and that he didn't realize how bad he was. He decided he was going to go back to wearing the oxygen because he was deathly afraid of causing heart failure.
The wind was taken out of his sails, he suddenly looked frail.
He has had the O2 on since. Except while he rides, the CPAP effect allows himto go w/out O2 an d he can stop for coffee etc for about 20 minutes before needing to get going again.
Now that the dr.s have made transplant so real to him, he is depressed and suddenly SOB constantly. He is even wearing it on his motorcycle. I feel so badly for him.
I admire him for his determination to ride that bike. Everybody stares of course, who wouldn't. Here comes this guy on a big loud bike and he has a nasal canula on his face.
I told him today, "Babe, you know that now you are that guy. You are the guy that people will say, "That's that guy who rides w/ oxygen" I think it's a compliment, he has some serious balls!
The feeling of freedom riding is unbelievable. I wouldn't trade that bike for anything.
Rest in Peace Aunt Marybeth
1 year ago