Two things happened today that made me decide to post again.
1. A phone call, on a Saturday, from his Pulmonologist.
2. Flea's post.
I was debating on posting when I read Flea's. That made the decision for me.
My husband, is 51 years old. He contracted polio at the end of the epidemic. Many his age got the vaccination. He, for whatever reason, did not. He was born November 21, 1955. Healthy, strong, large ...and in a tall family. Dark Curly hair, big ears, HUGE smile. Ornery look. I tease him that his childhood pictures look like "The Beav'"
Summer 1959, and he was 3 1/2. He became ill. It soon became apparent it wasn't just any illness but he was very ill. It became a fight for his life and a lifetime fight. Polio put him in an iron lung, took him away from his childhood home in Northern California to stay in a children's hospital in San Francisco where his mom could only visit as she took care of her other 4 children. (No Ronald McDonald Houses then!)
As polio ravaged the body ... eating away the muscle tissue ... crippling his body ... he managed to fight ...with multiple surgeries, unimaginable hours of heat packs and physical therapy, full body casts, hospital stays and even birthdays in the hospital .. He SURVIVED.
His body, is not a normal body.
That, is a picture of a kitten on his rib cage. The curve in his spine, severe, and the rib cage does not expand to leave much room for his lungs.
His chest wall muscles atrophied to nothing, and they fused his back 2/3 of the way up, but did not put a rod in it (they WERE around, we don't know why they did not.)
When I met him, he was 5'5'' on one foot, and 5'3'' on the other. The doctors suspect he'd be ABOUT 6'3'' had he not had polio. That, is how bad the scoliosis & damage is.
He weighs all of 98 lbs. I think I realized just how bad he'd been effected when my youngest was about 8. We were watching a documentary on the Holocaust, as they were throwing the bodies into the mass graves, my son turned to his father and asked "Daddy, did they have polio too?" It struck me, he's THAT skinny! He has THAT much atrophy. Just add the scoliosis to his body, and that's exactly what he looks like!
How he walks, no one is really sure. I've lost track of the number of times that we've been to see yet another doctor to see if something can be done to help him, and the doctor looks around for his wheelchair at the end of the appointment. At that point, we laugh and he hops down from the table. The doctor then, a little embarrassed says "I guess I should examine your gait huh?" Our physical therapist has no explanation for why he can walk. There isn't enough muscle tissue to support his weight ... oh well. It's working, don't mess with success right?
He is wearing out. He needs a cane most of the time now, and we wanted the Habitat house because it was wheelchair accessible for when that's neccesary. Hopefully later than sooner. He fatigues faster than he ever imagined.
The call tonight ... concerns us. He had a sleep study last week. He was hoping to prove that the previous 2 studies that said he had apnea were wrong. The pulmonologist had given him some hope that they'd find something besides apnea, but, there was probably something there, because of the polio/scoliosis.
So, less than a week after the study, he calls, on a weekend evening ... to say "you have apnea, and not only do you have it, it's SEVERE." A regular CPAP won't work. So, the pulm wants to redo the study and try another machine, but my husband couldn't remember what it was. But, he says he's not going to do it, because he (my husband) doesn't think they'll find something to help him. (men!)
I am trying to convince him ... that some help, is better than no help, and unless they find out, he won't know for sure.
In the meantime. If you think that the childhood diseases that we vaccinate against are really harmless diseases ... I challenge you to walk a mile in my husbands body.
