Category: Diary

Cystic Fibrosis Hospital Admissions in Covid 19

CF Hospital Admissions & Covid 19 | What to Expect

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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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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Isolation doormat reads welcome home

From Isolation in Hospital to Isolation At Home

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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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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CF patient wearing NIV after surgery

Sinus Surgery Recovery

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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Gowned up ready for sinus surgery

Sinus Surgery – The Day of the Operation

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 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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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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Sinusitis mucus

Sinus Issues in Cystic Fibrosis 

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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Christmas Dinner in hospital

What’s it like to spend Christmas in Hospital? – Part 3

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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Front of Leeds First Direct Arena after Shed Seven

Shed Seven Leeds Live Review

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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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

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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

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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

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The Smyths at Oxford

The Smyths Oxford Academy Review 

The Smyths Review, Oxford 02 Academy – November 2019 Despite the abundance of tribute acts listed at the O2 Academy Oxford, I have never seen a live tribute to a band. Having not been old enough to experience The Smiths in their heyday, I was keen to see some of favourite songs performed live.  A quick cheeky pre-gig meal at Red Star and we find ourselves one place-setting along from

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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.