Thursday, 12 August 2010

How it all began (part 1)

So, it occurred to me today that it would be wonderful to have a place to vent and share the experiences common to all of us with this hideous 'problem'.  For those of you who don't know me, I developed tracheal stenosis (a narrowing in my airway) about thirteen years ago, after having probably the most stupidly serious case of glandular fever ever.  It was ridiculous, one minute they were telling me I had the 'kissing disease' (ha!), and the next I was waking up in Intensive Care, paralysed from the waste down and unable to breathe, bright yellow from the liver problems, and hallucinating away.  Fun, eh?  Glandular fever doesn't do this, people told me.  Um, yes it does!

So when I woke up, I had a tracheostomy.  A couple of weeks later, they removed said tracheostomy.  I couldn't breathe.  They kept telling me it was the pneumonia, the pulmonary oedema, all the other stuff.  But I lay there day in day out with it getting harder and harder to breathe.  And it got scary.  My oxygen levels settled in the low 80s, I was constantly dizzy and sick, and I couldn't breathe well enough to eat or drink.  Imagine that!!  I'm a fat, greedy little sod usually, so it really was an unusual situation.

They transferred me to a chest ward.  I was surrounded by OAPs dying from lung cancer.  This wasn't exactly as inspiring experience.  The emininent Dr Doolittle (as he did very little) decided to send me home after two weeks.  Despite me still not being able to breathe. 

So I went home.  And just a few hours later, things got very difficult.  I could barely breathe at all.  It was insane.  I tried to stand up.  I couldn't.  I ended up crawling to the stairs and throwing myself down them.  The doctor was called, I was sent back to hospital.  The ENT team came to check me out, and the registrar decided that i must have a blocked airway.  He had a look down and couldn't see anything, so he decided to take me to theatre.  I remember the phone call, he actually pulled rank over someone who was about to have surgery for a nose job!  Aren't I glad he did?!!  They found, when they looked down further, that I had an almost total stenosis, basically, scar tissue had blocked all but the tiniest section of my airway.  When I say tiny, I mean tiny; it was less than 1mm wide.  Imagine breathing through the eye of a needle and you're halfway there.

I woke up with a tracheostomy.  I wasn't so worried about it at the time, all I thought was thank God, I can breathe!  They took me to HDU, and gave me a good dose of sub lingual ketamine, I think.  Fun!  I also had codeine injections, also terrific fun.  And I carried on breathing.  Then the ENT doctor ruined it; he told me that not only would I always have a tracheostomy, I would never ever speak again.  If no air goes through your trachea, no air goes through your vocal cords.  That was a blow.

So cue the massive depression.  Ignore the fact that I was living with the world's most selfish relatives (who the hell takes someone a present in hospital and then charges them for it?!), I was only just 18 and I'd had such massive plans for my life.  And here I was faced with the news that I would never be 'normal'.  I confess, I didn't cope well.

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