But You Look So Well | CF Blog
Cystic Fibrosis Blog – A journey to lung transplant
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
Continue reading...
Cystic Fibrosis Hospital Admissions & Covid 19 Hopefully this post will be helpful for anyone considering a hospital admission for their CF. These are my own views and related to ward 26 at Heartlands Hospital, Birmingham and only really relevant to people with Cystic Fibrosis. On this ward patients have their own individual rooms with an ensuite bathroom, so obviously a different kettle of fish to other wards. It’s a
Continue reading...
Organ Donation Law Changes To ‘Opt-Out’ Today is a big day in the transplant world. 20th May 2020. The date that the presumed consent law comes into effect (for the UK) also known as Max and Keira’s Law. I like a good date. Not a romantic date, although one of those would be nice too, especially considering the current climate. But a date which looks good written down numerically. No
Continue reading...
Home From Hospital To Social Isolation! I am at home! Socially isolation obviously but still! After all the sinus business and Corona Virus panic, I have now been allowed home. Over the previous few days, the CF team has been emptying the ward of as many patients as possible. Teaching people how to do home IVs if they haven’t before. And in my case discharging me slightly before they would
Continue reading...
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...
Cystic Fibrosis and Covid-19 I am recovering in hospital after my Sinus Surgery as Covid-19 really starts to take hold of the country. Although the ENT team are happy with me to be discharged, I am still recovering from the operation. My balance is a bit all over the place. This is no surprise as I have issues with it due to taking Gentamycin as a youngster. Whenever my body
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...
Chronic Sinusitis = Constant Chest Infections I have spent weeks in a vicious circle. Coming down with a sinus infection, this going onto my chest and then needing a 2-3 week course of IVs (intravenous antibiotics) to help the chest infection. Then come off the IVs only for me to get a sinus infection again. The current cycle length is approximately a month. 3 weeks of IVs, struggle to manage
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...