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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!

Tuesday, 7 June 2011

Fingers crossed folks

Is this a large glass of Pimms I see before me? Yep and it has my name on it!

Tomorrow I see my specialist at Broomfield hospital and hopefully I will find out that the delay in getting my referral to Papworth has all been sorted out now. And that my two year window to have the transplant in, starts from tomorrow instead of three months ago and that there is such a thing as the tooth fairy.
Yeah... right.
I am now a bag of nerves. What happens if they have changed their minds and I can't have it done?
Well I suppose once I have got myself up from off the floor where I will be holding on to his ankles and having a hissy fit to end all hissy fits and then eventually come out of my bedroom, where I will hole up for a month or more and would have grown a beard etc, I will get on with life.
Actually that last part isn't true of course... I couldn't stay in my room for more than a half a day!

If they say no because everything has changed, then I will book a holiday to Turkey in September when Julie and family are out there and pay for someone to arrange all my oxygen to be delivered over there, stress free for me and go while I still can fly.
That is of course if I can convince the specialist to sign a letter to say I am fit to fly. If he's said no to the transplant, then that's the least he can do really in my books.
Then I will book a fab cruise ready for next year and once again arrange for oxygen to be delivered, rather than me smuggling it on board and just go off and enjoy myself while I can.
So there is always an up side.
I know, who am I trying to kid?! But you have to make the best out of your lot in life and not worry about what you can't change. Isn't that basically what the 'Serenity Poem' says?

My mother has already got my nerves jangling by being in a foul mood when I went round to see her this afternoon. Every time I tried to talk to her about something that was on the TV etc or defend someone that she was moaning about, I was wrong or what did I know etc.
Not a lot obviously, otherwise I would know better than to be sitting at hers getting the rough end of her tongue instead of staying at home watching the afternoon rerun of 'Midsummer Murders' on the TV with a bar of 80% dark chocolate! Perhaps I could book her in at Midsummer for a holiday there!
I had already offered to take her out for a drive again this afternoon, but she had said she had fell over before I could finish asking her. To which I then added that I didn't think it would be wise if she was unsteady on her legs and said I would just come round for a cuppa, which is why she had a moody on.
Unfortunately this is what happens when you cry wolf too many times. I don't know for sure if she had fell over or not, but I certainly wasn't going to risk having her keel over this close to my appointment.

Still I have had a reprieve from Julie who has said that I could 'glamp' in her garden when she has her Pimm's day. It can be a mini holiday for me!
If I camp near her shed or attached to a special outside extended power lead so I can have my concentrator in my tent, than I can sleep outside with the others.
Obviously I'm going to have to check things out, but Yay hay I might be 'glamping' with the rest of them!
So if anyone out there who reads this blog knows of any reason why this could be dangerous, please, please, please step forward as you have till the 25th of this month to tell me please.

Lots of love Debbie x

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