Tuesday, 1 January 2013

Happy New Year!

It is safe to say that 2012 has been a year of ups and downs. Seeing many of my friends get married and being maid of honour for my best friend were certainly some of the best times I saw this year. 2012 also saw the completion of Luke's doctoral studies which I was unsure I would be around to celebrate with him. I was also really pleased to be involved with my local paper (The Basingstoke Gazette) in a campaign to raise awareness about organ donation as well as Cystic Fibrosis. I was also fortunate to be included in a BBC national news piece about ex-vivo lung perfusion transplantation. It means so much to me that I can use my circumstances to raise awareness about organ donation and even one person signing up after reading my blog could potentially make a huge difference! Oh and how could I forget the addition of Azlan the rabbit to our little family?

The bad times? Spending several long stints in hospital, the first back in January/February and then spending two months in hospital over the summer. Being so desperately ill was so frightening and feeling my health decline generally makes you feel very powerless. I am very lucky to have come through that admission, albeit a bit weaker and in more need for my transplant now than ever before, but at least I'm here.

I have two lovely friends called Rhod and Caroline who are running the Reading Half Marathon to raise money for the CF Trust. It would be fantastic if you would take the time to visit their fundraising page and sponsor them, no donation is too small! Click here to visit the page. The CF Trust does some amazing things with the money they raise from providing support in many ways to individuals with CF and their families to investing in high quality research to bring forwards new treatments for CF. Hopefully with new treatments and perhaps even a cure one day being discovered, the need for organ transplants to extend the life of Cystic Fibrosis patients will be no more! One drug that is currently making a big difference in some CF sufferers lives is Kalydeco. This drug works specifically on the CF mutation G551D. Although the CF Trust did not fund any of this particular drug’s research, they are working hard to campaign for it’s availability on the NHS. To see what a difference this drug can make, please read my friend George’s blog.

For me a cure for CF will not undo the damage sustained by my lungs, but could potentially keep me stable. What I really need for an improved quality of life and for an extended life is a double lung transplant. Perhaps in 2013 someone will be selfless enough to decide to donate their organs should the worst happen to them. If I were to benefit from such an act of generosity and get a second chance at life, it would be truly humbling. I look upon 2013 as a year of hope.Wishing all of my blog readers a happy new year!

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