Life with Cystic Fibrosis

Originally published on Tuesday, 28 February 2017

When I was young (I’m a 1980’s child), management of CF was primitive compared to how it is now.

Diet & Treatment
From what I remember, Creon wasn’t on the market until around 1985. However, there was another tablet that aided digestion, which wasn’t as powerful as Creon. As a result, fatty foods such as cake, crisps, biscuits, etc were foods to avoid in the CF diet. So the introduction of Creon came as a shock to me when I was allowed these types of food and although I am able to have these foods, I don’t really eat them due to not having much of a sweet tooth.

Over the years treatment has improved vastly, aiding a better quality of life and CF people living longer too.

Not only has treatment improved over the years, but also equipment used to administer them. With advances in technology, nebuliser equipment has become more compact and treatment taken through these have become quicker to take too.

Medical advances seem to be happening fast at the moment with all these promising drug trials.

OK not all trials work out as we hope, lessons from them are learnt for the next drug trial, so all is not lost.

It was once believed exercise was bad for the lungs of CF patients based on the coughing fits caused as a result.

It was later realised coughing during exercise was down to the airways opening up as a result of deep breathes, which in turn improved the lung function.

Mix and match
Before segregation came into force in 1991, CF patients were allowed to mix no matter the strain or bugs they had. Little was known about cross-infection.

Looking at how segregation works now, people new to CF and use to the segregation rules will not believe that there was a time when CF patients went on coach trips together. One trip seeing the patients camping at Sherwood Forest, with 6 patients of different bugs and strains sharing a tent.

Lessons learnt about CF for new parents of children with CF
From my own experience, one thing I’ve said to parents new to CF is to encourage exercise with their CF child from an early age. Find something the child will enjoy and would take up as a hobby.

I am lucky to have a mild form of CF and have coped with it really well.

However, not all has been rosy with CF. There are times when I get upset, stressed or anxious about things. In particular when I’m not well.

However once treatment for a chest infection shows signs of working, the psychological strain this has on me is lifted.

CF will have a psychological effect on not just patients, but also their parents, siblings and partners. This side of CF happens to everyone at some level.

CF people do try to remain positive and tend to use a lot of humour as a coping mechanism, which for me works.

Every day will be a learning curve for anyone, whether it be for a CF person, relative or even the CF team at the specialist clinic.

One thing for sure, despite the effects CF can have, the treatment of today means we get to live a better quality of life and live longer and longer.

Two years ago a man well known at my hospital passed away at the age of 75, which for me is the oldest known patient.

If he can live so long especially when at the time he was born little was known about CF, then there is hope for us all.

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