Thursday, 24 November 2011

What does TS feel like?

Well, for me it happened so gradually that it's really hard to say.  I had been on a ventilator in ITU for some weeks, and when they took me off it I was told that it was natural to feel a bit breathless.  Only I wasn't just breathless, I was breathless plus plus plus, if you know what I mean.  I was too out of breath to speak, and I couldn't stand or move anywhere without a huge amount of support.  And the breathlessness didn't get better, it got worse.  I became too restricted to keep food or water down, and as a resulot of that, I passed into a borderline coma because of unreadable levels of blood sugar.  All very traumatic. 

My brain was telling me that I was slowly suffoicating, but all the doctors were telling me it was in my head!  It felt like I was dry drowning, and my instinct was to fight it.  Because of this, I could not sleep or rest at all.  I was incredibly exhausted, beyond anything I had ever felt before.  And that made me really over emotional.

Eventually, they discharged me from hospital, and I found myself alone in the house with my cousin, still unable to catch any useful breath.  I knew that if I stayed there I would die, so I used my final oxygen supplies to throw myself down the stairs.  I knew that they would have to take me back to hospital, and it was my hope that someone would find out what was wrong.

Only I didn't factor in that my Uncle and Aunt and Cousins, for that matter, did not react as normal people.  They called the out of hours GP.  It being the countryside, the GP came to the house and his first words were 'call an ambulance NOW'.  While they were doing that, he gave me a nebuliser.  The nebuliser didn't help at all.  The narrowing in my airway was too great.  So he did something that was of more use than anything else.  He looked me in the eye and told me that he was here to help, he would stay with me until they found out what was wrong, and then he held my hand and hugged me.  Not in a creepy way, but he realised that I felt very alone and he made me feel so much better by doing that. 

So I got back to hospital.  By this point, I was so short of breath that my body was responding physically by grabbing at the air to try and physically catch some oxygen.  It's an involuntary reaction, you don't even think about it.  A very alert registrar came to my bedside and said that he was sure I had some kind of obstruction in my airway, but he couldn't see it with the tools on the ward.  He said that I should relax, not eat or drink anything (impossible by then anyway), and he would organise some tests. 

I had X Rays, CT and MRI scans, blood tests, ABG etc, and finally they took me down to the ENT clinic to be scoped (when they pass a fine camera into the airway).  He apologised to me as it was a traumatic experience; given that my airway had clearly narrowed, to have something else in their blocking it was very distressing.  He told me that I had to go to theatre.  He couldn't see a blockage, but he explained that I had a serious wheeze and stridor, and it was a matter of life and death, he felt that the blockage was too low down to be seen with the scope they had, but it was most certainly there.

He rang theatre to tell them I was on my way.  And he got into an argument with someone.  They told him they were fixing a broken nose next, and he told them that the broken nose could 'damn well wait' as he had an 18 year old about to go into full arrest.  I didn't realise entirely that he meant me, I was just too ill to take it in.

So off to theatre I went.  The lovely anaesthetic people held my hands and stroked my forehead, murmering gently to me as I went off to sleep.  They told me that it was all going to be okay, and I would feel a lot better when I woke up.  They weren't wrong.  I woke up in a room with two doctors by my side.  One of them smiled at me and said 'How do you feel?'.  I took a deep breath, smiled broadly and said 'OMG, I can breeeeeath!'.  And my next word was 'Ouch!'.  She said to me, I will just give you something for the pain, and she went to get a tablet which she popped under my tongue and said it would dissolve.  I don't know what it was, but it certainly worked.   They put a needle into the muscle on my right leg and gave me something that I think was liquid codeine.  It worked incredibly well.

I was sent off to the HDU.  I instantly felt a lot better because I could breathe a lot better than before.  My appetite and thirst came straight back.  In the HDU, there was a nurse who told me that she too came from Essex, and she asked me if I'd like some food and something to drink.  And I said 'oh yes please!'/  She went to the staff cafeteria and brought me a little bit of everything.  And I thoroughly enjoyed it.

The next day, a doctor came to see me and said 'do you realise that you will have this tracheostomy forever?  I clearly didn't.  I was so fixated on the fact that I felt so much better, that I hadn't even registered that I had a stoma.

He then said 'and because of your stenosis, which is untreatable, you will never speak again.  Ever.  And at this point, I went into deep shock.

It transpired that my breathing problems before had been cause by a stenosis that was blocking almost all my airway in every direction.  They estimated that had they not got me to theatre when they did, my trachea would have blocked completely within an hour or two.  And because no air at all was now passing through my upper trachea, I could not speak.

So there I was, just turned 18 years old, long blonde hair falling out by the handful (I did go almost totally bald), a tube in my throat, and no voice at all.  And they told me that this would be my life, forever.

So in short, when people say to me 'what does TS feel like?'  I answer this; it is distressing, painful, frightening, exhausting, emotional, life destroying and absolutely the most terrifying thing I have ever experienced in my life.  It feels as if someone is leaning on your windpipe with all their weight, and you have to fight for every breath.

If you have the chronic variety of TS, like me, you will find yourself going through traumatic and life changing experiences.  But you can survive, it just takes a lot of will to live.

I hope I haven't bored you with this, lol, there was no short way of explaining it.  Take care, and thank you for reading :o)

Tata for now, and look after yourself X

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