Episode 03 - Treatment
Cystic Fibrosis affects lots of different areas of the body in lots of different ways. Sometimes they’re slightly annoying, and other times they’re absolutely terrifying. However, there are also many ways to treat CF, and many people who decide to push their bodies to the very limit.
Dr Helen Barr
Dr Helen Barr is a respiratory consultant at the Wolfson CF Centre in Nottingham. She breaks down the ways that people with CF can treat chest infections. Her key message is that it’s much more important to prevent chest infections in the first place than trying to get rid of them afterwards.
Like most people with Cystic Fibrosis, Siobhan has grown different chest infections in the past and had them treated with different medicine. However, after being on one particular drug for an extended period of time, she started discovering some pretty scary side effects.
Fiona is a physiotherapist at the Wolfson CF Centre and has been working with Cystic Fibrosis patients since the mid-80s. She’s seen first-hand the changes that have happened with CF treatment since then and nowadays, there’s lots of physio options available. Hear more from Fiona about the importance of exercise in this episode’s Extra Breaths.
Pactster is an online platform with fitness videos, covering a range of disciplines, designed specifically for people with Cystic Fibrosis. Instructors like Sophie, Natalie, Aaron, and Katie have CF themselves. If you have CF and are based in the UK, it’s free to use.
Jerry Cahill has been living with Cystic Fibrosis for 61 years and has reached that age in part due to being rigorous with exercise and treatment. In that time, he’s developed a rich understanding of the whole package of CF, including the importance of living life outside of treatments.
Darren is a dietician at the Wolfson CF Centre and gives an overview of how Cystic Fibrosis can affect someone’s nutritional needs. We need to take Creon enzyme tablets, but that’s just scratching the surface. Although some people can get by without too much trouble, others really struggle with their nutrition. Hear more from Darren about CF-Related Diabetes in this episode’s Extra Breaths.
Like a lot of people with CF, Beth struggled to put on weight. She was then offered a feeding tube (PEG) which she reluctantly took. It helped her get back on track but it was by no means a pleasant experience. However, Beth never lets CF get in the way of her living her life, despite the lasting effects of her PEG.
In 2016, Nick Talbot became the first person with Cystic Fibrosis to reach the top of Mount Everest. It took a horrendous training regime to get there, leading him to think of the whole experience as the peak of stupidity. Listen to Episode 01 - Cystic Fibrosis to hear about Nick reaching the top and this episode’s Extra Breaths to hear what’s next for him.
Liz & Jerry Marler
You may not know this because I like to keep quiet about it, but in 2015 I ran the London Marathon. I trained as hard as I could but probably not as hard as I should. I reflect on the experience and what made me want to do it, and my mum and dad reflect on why they almost wanted me not to do it.
Ben is a personal trainer and bodybuilder with Cystic Fibrosis but many people see him as a superhero. His CF is a huge driving force for what he does and through social media, people all over the world are inspired by his achievements. People used to think of him as Superman but nowadays he’s more like Thor. Hear more from Ben about his bodybuilding journey, including tips for anyone starting out, in this episode’s Extra Breaths.
Some people are faced with situations where it feels like nothing they can do will make them better. Ru was listed for a double lung transplant but didn’t settle with her world ending like that. Through a very horrible journey, she was able to turn her life around.
Presented and produced by William Marler.
Recorded at Birmingham City University.
Featuring the voices of Siobhan, Fiona, Jerry C, Darren, Beth, Nick, Ben, Ru, Dr Helen Barr, and my wonderful Mum & Dad, Liz and Jerry Marler.
Music by Ben Weatherill.
Illustration by Vicky Neville.
Thanks also to Sam Lewis for his keen ear and ever-helpful advice.