My life on a plate! A place where I get to waffle on about anything and everything, and hopefully raise some awareness about Cystic Fibrosis and organ donation on the way.
Friday, October 24, 2008
It's been a sad 24 hours as we lost Toria (above) after a long and valiant struggle with CF. Toria leaves behind not only a grieving family but an 8 month old little boy. Take a look at her blog at some point; she was an extremely talented and open writer and it’s well worth a read. Along with feelings of heartache for her family, it has raised some hot emotions and some frank confessions.
I don’t really want to write too much on the subject as the most important thing is to remember Toria and what a wonderful vibrant and strong person she was, but to the Anon commenter on Oli’s blog, his feelings were only as judgemental as yours. Humans feel deeply and passionately and sometimes feelings are driven by emotion. No one can help that; that is why you wrote what you wrote and why Oli felt what he felt (which he is shrewd enough to observe about himself in his blog). As far as Toria goes, I’m just so saddened; she was a truly feisty woman who I was privileged enough to talk to on many occasions, and will be greatly missed by everyone who knew her. Thinking of her wonderful family, L and E at this sad time.
Moving on....I had another blood test last week which brought me back down to earth with a bump as my creatin (or apparently creatinine? Did I make the first up?) has risen again to 134 – highest it’s been. Humph. I am awaiting further instruction from Harefield. I’m feeling great (yay!) but I suspect they will want to try this new Immuno and have to confess I’m scared. Scared because I have been so so lucky. No rejection so far (touches wood 1000 times) which is almost too good to be true. And the cyclosporin is the only drug which I have been on consistently since day one, so it’s hard not to attribute my good fortune to this.
As always, the most important thing is to listen to my team, so this is what I am planning on doing. They’ve seen all this before and have told me already it’s a fairly common side-affect of cyclosporin, so whatever they say goes. Even if I do have a bit of a pout about it. My potassium was too high to but a) I don’t know what that means and b) apparently it can be caused by the “trauma” of taking the blood (I had 5 attempts with two people trying) so they’re just going to re-do the blood tests; probably nothing at all to worry about.
Lung-wise? They are awesome. Work wise? I am happy, busy and feeling very fulfilled. Life wise? It rocks and I love it.
29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy.
I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.