But You Look So Well | CF Blog
Cystic Fibrosis Blog – A journey to lung transplant
Part two of my ‘media day’ followed with BBC South Today filming me for an interview. After my radio interview earlier with BBC Oxford, I met Natalie Verney who was going to be coming to my house. We agreed she’d give me half an hour and then follow me. This gave me time to go home and take a moment to gather my thoughts and cram down a banana. When
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With less than 24 hours notice, I was up and off to speak to BBC Radio Oxford. I knew I had to be there for my interview at 10am and that I would be speaking about my experiences on the transplant list, but other than that I didn’t know what to expect! My boyfriend gave me the tip to warm up my mouth (!) before arriving to help loosen up
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In September last year I saw a post on one of the transplant Facebook groups asking for people waiting for lung transplants to help in organ donation awareness promotion. I’ve previously been quite reserved and shy about telling my story, but I figured if I was willing to receive an organ, I better change my attitude! I gave a radio interview to Jack FM which was a momentum fail. I’m
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For four years the CF community, particularly the CF Trust, have been campaigning for Orkambi to be prescribed on the NHS in the UK. This drug is a precision medicine which helps CF patients with two copies of the F508del mutation (approximately half the CF patients in the UK) Eventually a deal was struck between (not so) NICE and the manufacturers Vertex and CF patients now have access to these
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Subtitled, how did I get so old? But more importantly, I am really glad I am so old! Twenty year anniversary of going to uni! In late September 1999, as the media ruminated the cause of Princess Diana’s fatal accident, Lance Armstrong powered to Tour de France victory, paper ‘solar eclipse’ glasses gathered dust and frantic preparations were being made before the deadly Millenium Bug hit us, I began university
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As much as I like to think of myself as independent and my stock answer for people asking me how I am is ‘ok-fine- and-you’, I have to admit that my body really does have limitations. These limitations now mean I’ve stopped doing a lot of things I used to enjoy. My ability to cover much ground at more than a snail’s pace is one of these. After a particularly
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