Kendal Calling Festival for disabled music fans – a review…. I went to Kendal Calling last year – this is my review of the festival in general and how accessible it is for disabled music fans. Kendal Calling prides itself on being a family-friendly and accessible Festival, but does it warrant the Silver award it has gained through Attitude is Everything?   The official blurb states… “Kendal Calling is a 3 The post Kendal Calling Accessibility Review appeared first on But You Look So Well | CF Blog ..read more

I have been neglecting this site somewhat recently. A lot has changed with my health over the past few years and I have been busy living life rather than writing. My last post was a year and a half ago – shameful!! I am now no longer waiting for a lung transplant as I AM TOO WELL!! I still go to my transplant centre every six months where they keep The post Life and Site Updates… appeared first on But You Look So Well | CF Blog ..read more

Lung Transplant Clinic – Pre-Transplant Appointment I visit my Transplant Centre (The Queen Elizabeth Hospital in Birmingham) every three months as I am on the ‘active list’ for lungs. This means at any point I could be called and told they potentially have some lungs that may be suitable for me. I mention the word ‘potentially’ as there are still many reasons why the organs might not be transplanted at The post Lung Transplant Clinic – What to Expect at your Appointment appeared first on But You Look So Well | CF Blog ..read more

Turning 40 with CF In September I reached a milestone birthday and blew out forty candles on my cake. Well, technically, I didn’t as no one wants me blowing my rancid breath over the WKD Blue birthday cake my friend had lovingly crafted for me! I am a member of some beauty and skincare groups on Facebook. One of my pet hates is when I see someone post about how The post When Getting Old & Wrinkles are a Blessing  appeared first on But You Look So Well | CF Blog ..read more

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, The post Starting Kaftrio (Trikafta) – 7 Dos and Don’ts for an Easier Ride appeared first on But You Look So Well | CF Blog ..read more

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 The post Symkevi Diary – My Experience on Symkevi (Symdeko) appeared first on But You Look So Well | CF Blog ..read more

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 The post CF Hospital Admissions & Covid 19 | What to Expect appeared first on But You Look So Well | CF Blog ..read more

Undertaking Home Intravenous Antibiotics During Covid-19 After two months at home and getting used to being in the swing of the normal world I started to feel unwell.  Normal world used very lightly – as in out of hospital, but still in the Covid era, so not actually that normal. I started to feel the unpleasant build-up on the back on my nose. The numb feeling which I’ve now learned The post Home IVs During Covid-19 appeared first on But You Look So Well | CF Blog ..read more

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 The post Max and Keira’s Law | Changes To Organ Donation Register appeared first on But You Look So Well | CF Blog ..read more

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 The post From Isolation in Hospital to Isolation At Home appeared first on But You Look So Well | CF Blog ..read more