Cystic Fibrosis Blog & Organ Donation Awareness

Welcome to my blog! I write about life with CF, documenting my journey whilst waiting for a double lung transplant. I like to think of this as an "interesting, transient time" in my life! Sure, there are a few 'bumps' in the road and life can be very difficult, but if you can't laugh what's the point carrying on? This blog is dual purpose - firstly to raise awareness of organ donation and secondly as a diary of sorts. The aim being that I can look back when I'm feeling a lot better and laugh about how things used to be.

Front of Leeds First Direct Arena after Shed Seven

Shed Seven Leeds Live Review

Shed Seven Shedcember  Leeds 2019 The bi-annual Shed Seven “Shedcember” tour has become quite an event over the years in our household. We join forces with my other half’s sister and her boyfriend, as a pre-Christmas gathering to sing our hearts out to the Sheds. In the last few years I’ve not had the most success in my attendance of Shed Seven gigs. I was in hospital for the last

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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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Kat Orman

BBC Oxford Radio Interview

With less than 24 hours notice, I was up and off to speak to BBC Radio Oxford. I knew I had to be there for my interview at 10am and that I would be speaking about my experiences on the transplant list, but other than that I didn’t know what to expect!  My boyfriend gave me the tip to warm up my mouth (!) before arriving to help loosen up

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Old fashioned TV

Oh shit, I’m gonna be on TV!

 In September last year I saw a post on one of the transplant Facebook groups asking for people waiting for lung transplants to help in organ donation awareness promotion. I’ve previously been quite reserved and shy about telling my story, but I figured if I was willing to receive an organ, I better change my attitude! I gave a radio interview to Jack FM which was a momentum fail. I’m

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The Smyths at Oxford

The Smyths Oxford Academy Review 

The Smyths Review, Oxford 02 Academy – November 2019 Despite the abundance of tribute acts listed at the O2 Academy Oxford, I have never seen a live tribute to a band. Having not been old enough to experience The Smiths in their heyday, I was keen to see some of favourite songs performed live.  A quick cheeky pre-gig meal at Red Star and we find ourselves one place-setting along from

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Orkambi tablets

Orkambi Review – The Long Term Benefits

Orkambi – The good, the bad and the ugly. Here I talk about Orkambi – 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 of

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Liam Gallagher Birmingham Review

Liam Gallagher Birmingham Arena Review

Liam Gallagher Review – Birmingham Arena, 12th November 2019 After visiting the hospital the day before, I wasn’t filled with joy at the prospect of another trip to Birmingham. But for Liam Gallagher I could make an exception. My other half had seen Liam Gallagher at one of his big outdoor festival style shows in Finsbury Park last summer and come back with glowing reports of an Oasis heavy set.

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Box of Orkambi

Starting Orkambi in the UK

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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Key events of 1999

Twenty year university reunion

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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Freestyle-libre-flash-monitor-close-up-on-arm

Flash Glucose Monitoring for CFRD

I was diagnosed with Cystic Fibrosis Related Diabetes (CFRD) in my mid-teens, shortly before my 14th birthday. I remember being in hospital and my schoolmates kindly doing a collection to buy a present, clubbing together to buy me Smash Hits 95. I clearly remember the double cassette (it was the mid 90s, I was years away from a CD player!) with hits of the era including: Dreamer by Livin Joy,

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Cf patient Helen and her dog on a mobility scooter

My first mobility scooter!

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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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.