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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!

Monday, 13 September 2010

The bunny has left the building

What a difference a day makes, although in the song of the same title, I think it was about falling in love. Of course in the life of Debbie Burden, it's everything happening at once and not all good things alas.
Though I guess in time it will be good maybe???
Sorry I'm talking in riddles again.
I went for my Oxygen Assessment today and as we knew by the blue fingers it was not going to be 'Yay you're cured and blue is the new colour for this season!' This was more like shaking heads and kind smiles followed by the words that I've always dreaded... We are putting you on full time oxygen. Which isn't full time just a mere 16 hours of oxygen a day ha ha. In case you didn't guess that was hysterical laughter.
I thought I handled it pretty well at the time as she talked about work and how I must be really tired all the time and that I have had a good run with still working etc and I didn't stamp my foot once or cry. Just a kind of wave of subdued surrender washing over me as my dream of going to Turkey and Hungary again next year faded away even further out of my grasp.
I have to go back in six weeks time to get the final yes this is working and yes you are definitely on it 16 hours a day till you get either your transplant or you snuff it which ever comes first basically.
It's all power for the cause of the transplant they say, but all I know is everytime I cry wearing this, the tubes fill up with snot and tonight there has been a whole lot of crying, but at least I waited till I got home this time.

I have had so much advice today and again tonight, that my head is about to explode and I feel so wired and yet so tired that I can't imagine ever sleeping properly again. Apparantly I have to go back down the doctors again tomorrow and get myself signed off while I rest and get accustomed to the concentrator from hell. sorting out when I will wear it and when I will have my 8 hours off. Then wait in for the oxygen chap to come to fit a longer tube to the concentrator so I can walk around the bungalow wearing it, oh joy of joys and considering I've caught my foot in it twice already, that will be helpful. At the moment I can just about get to where I keep my Pimms wearing it! And oh baby am I hitting that tonight.
So no more crying now... Fuck my body, I'll get over this fit of the vapours as my late father-in-law would say and hopefully the bitch will be back very soon!

Lots of love Debbie x

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