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I'll be 55 this August... I've had bronchiectasis for ten years plus this year... End stage lung disease for the past year...been on oxygen for three years... and have I got used to it yet?... nah! I am now waiting for the biggie; a double lung and maybe a heart transplant. I love my life weirdly enough, because I have some wonderful family and friends who are with me every step of the way on my adventures, even though I embarrass them on a daily basis with my unorthodox way of looking at life. Not for the faint hearted!

Saturday, 1 October 2011

Here comes the doubts

For the second time in as many days, I have felt as if my opinion doesn't account for much and I'm hoping that the third time isn't on Monday, Tuesday or Wednesday of next week when I am at Papworth.
I'd hate to go for a hat trick.

I'm very restless today and although I woke up fairly alert, I could have easily just of slept throughout the rest of the day, which is my defence mechanism for dealing with situations that I'm nervous about. I wonder if I had been a spy, would I have lapsed into a coma like nap when they shouted to 'bring on the thumb screws'?
I went off for a swim at lunchtime with Jean to relax myself.
There is something about pushing yourself through the water that totally blocks off any other displeasing thoughts. Whether it's where I am trying not to drown or wishing that the cramp in my toes wouldn't always start when I'm out the shallow end leaving my feet splayed out like a ducks, I'm not sure, but for nearly an hour I can just switch off.

Apart from feeling like someone whose opinion doesn't matter, I also really getting frightened about next week now and if I should be lucky enough to get a transplant.
I know there is a whole list of things that can go wrong as I've been told that things could go horribly wrong with a transplant and half of them I have no idea what they are and don't really want to know.
And for the greater part of this journey, I have successfully managed to shove those thoughts to the darkest part of the back of my mind. But now they are just leaking out and putting self doubt into my already overloaded brain.
There is a fairy ring of mushrooms on the communal grass area outside our bungalows and I have this urge to sit in the middle and make a wish before they get kicked down again by some child with no love of nature.
But what would I wish for?
The saying goes 'be careful of what you wish for' and I think that has shown it's self to be very true. I have been caught out a few times by not thinking wishes through!
I would like to be again how I used to be before this disease appeared, a ball of energy, but that had it's draw backs and the disease was always lurking in the background.
So should I sit outside in the dark in the middle of fairy ring, with my eyes shut and quietly wish for a new set of working lungs? I could as long as I covered all the small print. I'd have to make sure that I said as long as they didn't hurt too much going in and after the operation. And that they will remain healthy and in good working order. That I will survive a lot longer than I would have done without new ones being put in. And of course a lot longer than the NHS statistics say for a transplant, which weren't very inspiring, because I'd hate to go through all of this and only survive another five years. That I won't become one of the 'transplants that have gone wrong' statistics and have to stay in Papworth seriously ill, miles from home, having my poor family and friends travelling up and down the M11 for months on end.
I think I could be sitting in that fairy ring until dawn trying to make sure all eventualities are covered and then I'd forget something which could be a make or break on this wish!

As you can tell, tonight I am having trouble seeing the positives in all of this great scheme of things, which isn't like me. I guess Pollyanna has left the building! Hopefully she'll be back tomorrow.

Lots of love Debbie x

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