Category: Life

Kaftrio Advice for Starting

Starting Kaftrio (Trikafta) – 7 Dos and Don’ts for an Easier Ride

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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But You Look So Well Festival Time

Symkevi Diary – My Experience on Symkevi (Symdeko)

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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Organ Donation - the law is changing

Max and Keira’s Law | Changes To Organ Donation Register

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

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Isolation doormat reads welcome home

From Isolation in Hospital to Isolation At Home

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

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Stopwatch

Lung Transplants Are On Hold

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

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Hand Sanitiser Shortage in Hospitals

Being On A CF Unit During Covid-19

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

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Sinus treatment for chronic sinusitis

Chronic Sinusitis – Gimme A Break!

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

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Organ Donation - the law is changing

Changes to the Organ Donation Law | BBC Radio Oxford interview

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

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Sinusitis mucus

Sinus Issues in Cystic Fibrosis 

Sinus Issues in Cystic Fibrosis  Not content with fucking up impacting on almost all our organs, cf also likes to mess with our sinuses. It is said that around 90% of Cystic Fibrosis sufferers have sinus problems. I’ve never really given it much thought. For years I have always had a bit of a runny nose, post-nasal drip and the feeling of having a frog in my throat. (Better than

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Christmas Dinner in hospital

What’s it like to spend Christmas in Hospital? – Part 3

What do you eat on Christmas Day in hospital? Everyone seems obsessed with food – especially over Christmas! And people are very interested in what hospital food is like over Christmas. Do you get a full Christmas turkey dinner? Glass of wine/port? My Christmas Day Hospital Menu Breakfast was just the standard offerings. No fancy smoked salmon and croissants here (unsurprisingly!!). Toast and/or cereal and a cuppa. Christmas Lunch in

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Christmas-Day-Hospital

What’s it like to spend Christmas in Hospital? – Part 2

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! 

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Christmas carol singers in hospital

What’s it like to spend Christmas in Hospital? – Part 1

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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BBC South Today filming

South Today TV Interview

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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But You Look So Well - Cystic Fibrosis Blog | Blogging about my life with CF whilst I wait for my life-saving double lung transplant. © Helen Roper and But You Look So Well, 2020 copy right notice: Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Helen Roper and www.butyoulooksowell.com with appropriate and specific direction to the original content.