I am 50 yrs old (almost) and was born with saccrococcygeal teratoma. I have a severe scoliosis (lumbar), dislocated hips etc and have been paraplegic all my life.
I have not been under hospital care for anything since my early 20's when docs told me there was nothing more to be done. (Because of internal complications,it was decided when I was a teenager that surgery was not an option.)
Then, last year I had my first chest infection ever, which turned into pneumonia, and I was hospitalised for over three weeks. Since then my breathiing has been sporadically bad, sometimes it feels as if I have someone sitting on my chest. I admitted myself to hospital earlier this year with shortness of breath and pains, and I was basically told I was imagining things! Desite this I refused to give in and eventually ended up with them giving me a pulmonary function test which I had last Wed.
I was shocked to find the result: Total value 28%. I am also nocturnally hypoxic apparently (I get headaches on waking which disappear when I've been up a little while)
It has been suggested by the lung function guy my consultant may want to put me on BPAP at night. How does this work?Is it comfortable? Do you feel much better? more importantly is there anyone else out there with the kind of levels I have, and can they offer me any advice about how to proceed from here?