But You Look So Well | CF Blog
Cystic Fibrosis Blog – A journey to lung transplant
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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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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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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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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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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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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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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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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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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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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