But You Look So Well | CF Blog
Cystic Fibrosis Blog – A journey to lung transplant
Turning 40 with CF In September I reached a milestone birthday and blew out forty candles on my cake. Well, technically, I didn’t as no one wants me blowing my rancid breath over the WKD Blue birthday cake my friend had lovingly crafted for me! I am a member of some beauty and skincare groups on Facebook. One of my pet hates is when I see someone post about how
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Advice for Starting Kaftrio from a Patient My friend is starting Kaftrio on Monday and asked me the question “What should I expect on Kaftrio? How is it being on Kaftrio?” It’s like being asked the question “what’s it like having CF?” – as in its not going to be a quick answer! Just because I had a certain experience doesn’t mean someone else will! I have been taking Kaftrio,
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My 5 Day Experience on Symkevi (Symdeko) I’d been on Orkambi for three years when I was given the opportunity to switch onto Symkevi. Symkevi (or Symdeko in the States) is the second generation modulator that targets the cause of CF at the gene/protein level (for some of the CF population). The initial ride with Orkambi was troublesome, especially on the chest and it took me about 8 months before
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Undertaking Home Intravenous Antibiotics During Covid-19 After two months at home and getting used to being in the swing of the normal world I started to feel unwell. Normal world used very lightly – as in out of hospital, but still in the Covid era, so not actually that normal. I started to feel the unpleasant build-up on the back on my nose. The numb feeling which I’ve now learned
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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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