He had come in with complications of cystic fibrosis, a disease that boiled down to a few faulty sodium transporters, most often a single faulty digit of genetic code. Without this sodium transporter, his cells don't push water into mucus, creating a thickened, nasty product that makes the normal kind seem delightful. He cannot get rid of this mucus. It accumulates, filling his lungs with a rising tide of congestion. It serves as a platform for bacterial colonization, the thick substrate impeding his immune system from properly fighting back. It clogs his intestines, it destroys his pancreas, his kidneys, whose ducts are as dependent on mucus as his nostrils. It stunts his growth, ramping up his metabolism hugely with the physiologic effort of clearing mucus. It will kill him, on average somewhere in his twenties or thirties. He is 17. His sister died of the disease at 18. He is terrified.
The device torturing him was a CF vest, a vibrating, oscillating, beating of a treatment, designed to free up mucus in the lungs, letting the child cough up some of the phlegm that was drowning him. This contraption of steam and metal had him for hours each day, a shuddering, clanking mechanical replacement for a process his body could not do. We doused his circulation with antibiotics, we gave him sprays of albuterol, steroids, and toxins designed to help fight his chronic infections. The volume of his medication was so high we had cut a port into him, a ready made venous access normally meant for chemotherapy.
He plays football for his high school. He has a girlfriend. He wants to go to college, to med school, but thinks he will become a rad tech because it takes less time. He doesn't feel like he has that much time. I can't argue. But he has a life, even inside the abusive steampunk hug of his vest.
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