Category: Cystic Fibrosis

But You Look So Well Festival Time

Symkevi Diary – My Experience on Symkevi (Symdeko)

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 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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Stopwatch

Lung Transplants Are On Hold

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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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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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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Leave from Hospital for CF patients

Going AWOL | Overnight Leave From Hospital

Leave from Hospital Actually that should be Absent With Leave from hospital but it doesn’t sound as fun. When you are an inpatient for a long period of time, it goes without saying that you miss home comforts. Not to mention becoming institutionalised! There is nothing better than your own bed, even if they aren’t motorised like the ones in hospital! The CF team is usually quite happy to let

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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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Christmas-Day-Hospital

What’s it like to spend Christmas in Hospital? – Part 2

Christmas Day in Hospital My partner came up to visit and we hung out. He pushed me down to the hospital cafe at the entrance, which wasn’t open! So we got some snacks from M&S and ate them across a table in an empty canteen. A romantic festive setting if there ever was one – with a bag of Sprouts on the table as a decoration. Yes, those infamous sprouts! 

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Christmas carol singers in hospital

What’s it like to spend Christmas in Hospital? – Part 1

Christmas in Hospital When people realise how long I spend in hospital (usually the majority of the winter), one of the first things they ask me is if I’ve ever spent Christmas Day in hospital.  Then where I am with my transplant. What’s it like spending Christmas in hospital? There is actually quite a lot of difference in the run up to Christmas and Christmas Day itself. I’ve spent several

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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.