Cystic Fibrosis Blog – A journey to lung transplant
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.
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
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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
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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
Continue reading...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
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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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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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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
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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
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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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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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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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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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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
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My Experience of FESS – Part One After seeing the sinus surgeon, I had a marvelous ten days out of hospital. It truly felt like a holiday. I caught up with friends, walked the dog and enjoyed some fresh air. I ate a lot of delicious homecooked food! Steak, roast dinners, sausage and mash. I did miss out on the Supergrass gig at Ally Pally, but this may have been
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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.
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