But You Look So Well | CF Blog
Cystic Fibrosis Blog – A journey to lung transplant
Lung Transplants Paused Currently my whole life revolves around being in hospital, whilst permanently living in fear of catching Corona Virus. I’ve been unable to escape it; it’s all anyone talks about. And what else is there to do in hospital but feed the fear by watching TV and going on social media? “Try not to worry about it!” and “Distract yourself from what is going on!” is the well-meaning
Continue reading...
My Experience of FESS – Part Two If you have read my last post you’ll have seen that I got back to the ward in one piece after my sinus operation and enjoyed being high as a kite for about an hour. Afterwards I started to feel quite tired so decided to put my NIV (Non-invasive ventilation) on. The NIV is a machine which does the hard work of breathing*, which
Continue reading...
Sinus Surgery – Meeting the Surgeon I write a little dairy in hospital. This was the entry for meeting the surgeon and confirming sinus surgery will take place: The surgeon takes my medical history, which takes longer and longer these days. I describe my numerous sinus infections. When I told him which IVs I was on, he laughs and says “Ah, yes, Domestos!” I had another camera shoved up my nose.
Continue reading...
Leave from Hospital Actually that should be Absent With Leave from hospital but it doesn’t sound as fun. When you are an inpatient for a long period of time, it goes without saying that you miss home comforts. Not to mention becoming institutionalised! There is nothing better than your own bed, even if they aren’t motorised like the ones in hospital! The CF team is usually quite happy to let
Continue reading...
Organ Donation Law Changes After many(!) weeks in hospital, I got to spend six days at home! Yes, six whole days! Within two days of coming off the ivs, my sinuses flared up again and as per usual started infecting my chest. At this time I was connected by BBC Radio Oxford to give to see if I would be willing to give an interview. This would be a follow
Continue reading...
Christmas Day in Hospital My partner came up to visit and we hung out. He pushed me down to the hospital cafe at the entrance, which wasn’t open! So we got some snacks from M&S and ate them across a table in an empty canteen. A romantic festive setting if there ever was one – with a bag of Sprouts on the table as a decoration. Yes, those infamous sprouts!
Continue reading...
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
Continue reading...
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
Continue reading...
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
Continue reading...
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
Continue reading...
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
Continue reading...