But You Look So Well | CF Blog
Cystic Fibrosis Blog – A journey to lung transplant
Christmas in Hospital When people realise how long I spend in hospital (usually the majority of the winter), one of the first things they ask me is if I’ve ever spent Christmas Day in hospital. Then where I am with my transplant. What’s it like spending Christmas in hospital? There is actually quite a lot of difference in the run up to Christmas and Christmas Day itself. I’ve spent several
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Orkambi – The Good, The Bad and The Ugly. Here I am giving an Orkambi Review- the good (benefits I’ve experienced as a result of Orkambi), the bad (the cost) and the ugly (the cost or more appropriately the foul things coughed up as a result of it)! Even on a quarter dose, it was tough coping with the initial side effects of Orkambi. Once I was over the worst
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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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