Mansfield woman calls for more understanding of rare lung and heart conditions
A woman from Mansfield with a rare lung and heart disease is calling for ‘more understanding’ of rare and ‘invisible’ conditions.
Forest Town-based Lou Chadburn, 42, was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2012 and needed life-saving surgery a year later.
Despite appearing healthy, Lou still suffers with breathlessness and fatigue, and is backing a national campaign to help more people to understand ‘hidden diseases.’
She is sharing her story in support of PH Awareness Week, from November 1-7, organised by the national charity PHA UK.
PH affects just 8,000 people in the UK. It causes high pressure in pulmonary arteries - the blood vessels connecting the heart and lungs. The type that Lou lives with, CTEPH, is caused by a build-up of blood clots. Just 400 people have this type.
“At first I thought I just had a cold”, said Lou. “I wasn’t breathing well, and my lips turned blue. I ended up being put into an induced coma. When I was told I had pulmonary hypertension, I thought I was going to die. I do feel like I’ve been given a second chance.”
Lou had major surgery, known as a pulmonary endarterectomy, at Royal Papworth Hospital in Cambridge in October 2013.
The operation involved surgeons draining her body of all blood to clear the clots in her arteries and lowering her body temperature by half – she was technically dead. After the clots were removed, the blood was refilled and her temperature increased, bringing her back to life. Lou must take blood thinners for the rest of her life.
She still suffers with fatigue and some breathlessness and finds it difficult to explain her condition to people.
“Pulmonary hypertension is rare and quite complex, you can’t tell someone has it by looking at them,” she added. “I want people to understand that you never know what someone is dealing with.”
As well as breathlessness, PH can include fatigue, blackouts, chest pain, swollen ankles, arms and stomach. Coughing can also be a symptom.
Dr Iain Armstrong, chair of the PHA UK, said: “Pulmonary hypertension can have a devastating impact on people’s lives and as an ‘invisible illness’ it’s vital that more people are aware of it. We’re grateful to Lou for sharing her story.”
To find out more: www.phauk.org.