Tuesday, 27 September 2011

Scar, you're a scar!....

Ha, a little play on words there.  It's a bit random, cos I don't know how many people out there will know the Extreme song 'Star'.  But what's done is done :o)

Soooo, yesterday I had a clinic appointment at the ENT hospital in London.  I decided to go on my own, so my husband got to doss around in bed all day.  Lucky him!  I decided to go on my own, because my other half seemed to be getting a bit confused, and thinking he was my carer, not my lover.  There's nothing that kills your love life more than watching your husband walk off and have a chat with your doctor about you.  So to make my boundaries clear, I have relegated him back to the role of other half, and the doctors now have no choice but to deal with me. 

Anyway, my consultant was in, and on fine form.  He told me that on thursday, he will be performing a tracheal transplant on a young lady who is in absolutely dire straits.  He apologised to me, as I was supposed to be the first, but I guess that if her need is greater, then she needs it more than I do right now.  He's a nice chap, my consultant, but he takes a long time to get to know.  He's generally quiet, and he has that stiff upper lip thing going on, but once you really talk to him you realise that he's just a normal bloke, with a normal sense of humour.  People who expect their surgeon to be God, they're the ones who get disappointed in life, y'know?  So anyway, the outcome is this, my airway is still completely dead, and solid as rock (albeit not in a good way).  But it's not as fecked right now as this other poor kid.  I think all of us should say a prayer for this kid, and her surgical team. 

My life, health wise, is pretty miserable right now.  I have this huge area of scarring on my neck, which extends right into my throat.  I had an infection a couple of years ago which ate almost all the way through the skin on my neck.  It went green, then black, then turned into liquid.  It was disgusting, and the idiot 'doctors' at the loony bin kept sedating me every time I complained about it.  Medical negligence?  And then some.  But I'm allowed to mention Mascalls Park Hospital, now the shitehole is a shuthole. hehehe.....  I wake up every morning with a mouthful of mucuous.  Mucous is basically a heady mixture of what other people would call snot or phlegm.  It isn't pleasant.  I then spend the first two hours of my day on a nebuliser to help me cough up the rest of the mucuous that has settled in my lungs overnight.  I take medication.  Carbocisteine thins out the mucuous in my lungs, helping me clear it.  I take two of those three times a day.  I use an inhaler, Flixotide.  It's a steroid, and it helps keep the swelling in my scar tissue down.  This is a good thing because all my scar tissue is in my airway.  My trachea is pure scar tissue.  I take 40mg oxcodone.  I take this 4 times a day.  I know it sounds excessive, but it's the only painkiller I have ever had that has mostly worked to control my spinal pain.  The spinal pain isn't like backache, people get that totally wrong.  The spinal pain is caused when bones in the spinal column rub against each other.  They're not meant to, lol, and that's why it hurts!

More medication, pregabalin, carbamazapine and priadel lithium, all help to control mood, mind and other nerve based problems.  And of course there are the almost constant nebulisers.  Most of the day revolves around treating my tracheal stenosis and associated lung problems.  When I have my tracheal transplant, and I am sure this will happen soon Mr S, hahaha, I look forward to getting my life back.  The freedom to make choices that are not based on medication or side effects will be the biggest thing that I gain.  Want to get on a plane to New York?  Sure, I'll be able to do that without having to first spend three weeks getting medication, copies of prescriptions, and letters saying I'm fit to fly.  Screw all that, I'll be able to just hop on the sodding plane!!  Can't wait.

The biggest thing will be being able to take a full lungful of air.  God, I would kill for that right now. 

Spare a though for the kid having the major airway surgery.  Air is a good thing, it keeps us alive and afloat.  I hope with everything that it goes well.  Good luck to all of them.

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