Category: Cystic Fibrosis

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

Continue reading...
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

Continue reading...
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

Continue reading...
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

Continue reading...
Orkambi tablets

Orkambi Review – The Long Term Benefits

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...
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

Continue reading...
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,

Continue reading...
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

Continue reading...
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.