Tag: Cystic Fibrosis Blog

Home lung function results - home spirometry

Home IVs During Covid-19

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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Hand Sanitiser Shortage in Hospitals

Being On A CF Unit During Covid-19

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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Sinus CT Scan

Sinus Surgery – Meeting the Surgeon

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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Sinus treatment for chronic sinusitis

Chronic Sinusitis – Gimme A Break!

Chronic Sinusitis = Constant Chest Infections I have spent weeks in a vicious circle. Coming down with a sinus infection, this going onto my chest and then needing a 2-3 week course of IVs (intravenous antibiotics) to help the chest infection. Then come off the IVs only for me to get a sinus infection again. The current cycle length is approximately a month. 3 weeks of IVs, struggle to manage

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Organ Donation - the law is changing

Changes to the Organ Donation Law | BBC Radio Oxford interview

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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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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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.