When I was 23 I met my husband. We married a few months later and shortly after we married my mother in law told me that my husband was not expected to live to be 35. I knew he was disabled, that was obvious by looking at him. He’d had polio as a child and it caused significant damage .. but I did not know that it would effect his life expectancy. He was 32, so 35 was a huge shock.
We went on about life and would on occasion talk about the difficulties and possibilities. We had 2 kids .. .both of whom had significant medical problems. I became ill when my first son was born and for a long time, he was *my* caregiver while I was caregiver to our children.
When my husband was 41 they did not think he would live another year. But he did. When he was 43 we learned that he had, as a complication of the scoliosis caused by the polio, displaced spinal cord in the c5/c6 region. That they said, would cause problems, some day.
By the time he was 50 he was as healthy as he’d ever been in his entire life. But they said the scoliosis is worsening and that ‘someday’ it would be the beginning of the end. You see, his scoliosis is beyond the ‘life threatening’ level of 100 degrees.
When he was 51 he was playing with the kids on a wednesday morning, took them to school and came back and said “I don’t feel very good”. An hour later he was in an ambulance slipping into a semi colon as his lungs filled with fluid. By the time the ER was able to do xrays his right lung was so filled with fluid they kept insisting he had a severe case of emphysema (he did not). As he spent 45 days in the hospital recovering they did further testing and we learned that the displaced spinal cord was now at c5/c6 and c6/c7 and there is permanent nerve damage due to the compression on the spinal cord. “Some day” he *could* step wrong and his life would be over in an instant.
“Someday” the worsening scoliosis would interfere with heart, lung, liver, kidney function. “Someday” the scoliosis would cause the organs, one or the other, if not all, to start to fail or possibly it could rupture and then he would die instantly.
“Someday” the scoliosis, already incompatible with life would, in fact, prove that it is stronger than his will.
In February he got pneumonia .. and it wouldn’t clear up ..
and it wouldn’t go away
and he coughed
and coughed
and coughed
and his heart went out of rhythm in April and they put him on strong antibiotics by IV while they treated his heart .. but the lungs stayed irritated and full of fluid
and in June he started to cough up blood
and he was placed in ICU in an isolation unit .. and given very strong antibiotics and he improved a bit .. but he still coughed and coughed and coughed. After a week they let him go but did another CT scan a week later and there was no change
a week later
no change
a month later
no change
last week
No change.
And that’s when I heard the pulmonologist that we’ve been working with for 20 years say
“Peggikaye, “someday” is here”
His ribs are pressing in on his lung .. and there is an irritation and it is causing the pneumonia … it’s not infectious so they can’t fight it. They can’t fix it. Because it is the rib moving in on the lung and they can’t fix the scoliosis …
this
is Someday.
But we don’t know how long “Someday” will last … it could be weeks .. it could be months, it could be years .. but we know that someday is here .. and life will never be the same.
Coughing can be relieved by using acetylcysteine based mucolytics. It is very effective in reduing coughs..:.`’
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Kiley, thank you, but this isn’t a normal case.This is a physiological response to the rib digging into the lung, causing constant inflammation and as a result an increased build up of fluids … it’s not an infection (at this point) and to stop the cough means the fluids can build up .. for now, the cough is .. as the pulmonologist said “probably going to be like this for the rest of his life”
Scoliosis should be diagnosed early so that it can also be treated at an earlier time. Late treatment can have severe consquences. ”.:`
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Randell, thank you for commenting. My husband’s scoliosis is not idiopathic scoliosis. It was caused by having had polio as a child. They fused his back without having used rods. In addition to no rods, the polio caused extreme muscle atrophy, with more atrophy on the right side than the left, so left side muscles were stronger (which allowed for a more severe pull) in addition , the adipose tissue was totally destroyed by the polio leaving him with a fused, but no rod, spine, unequal muscle strength and no body fat for protection. It is not your normal scoliosis by any stretch of the imagination and there are few, if any cases in the united states as bad as my husbands. There is, at this point,nothing that can be done because it is too far gone.
Under severe conditions, scoliosis maybe more damaging to the body since it can host other health problems. ,
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His scoliosis is severe and beyond treatment. and yes — we are dealing with the host of other health problems including organ damage, lung compression, spinal cord displacement and compression and severe pain.