I just felt like there was no one there for me
Sarah, who lives in Berkshire, first noticed that she was getting out of breath more than usual in April 2015.
She found she was breathless running to the station, and it started to get worse. When she went to her GP, she was offered spirometry testing, but her results were normal and no more action was taken despite her symptoms not getting better.
Nearly two years later, she was told she had asthma and prescribed inhalers, but her asthma nurse cast doubt on the diagnosis when none of the drugs were helping to control her symptoms.
By 2018 things were much worse. Sarah could hardly walk up hill without getting out of breath. A new GP finally suggested she might have scleroderma – a rare condition which can cause lung tissue to stiffen. She had further respiratory and cardiac tests including a CT scan, which showed scarring on her lungs. However, delays meant that she didn’t get to see a specialist.
It wasn’t until later that year that Sarah was finally seen by a heart consultant. By now she got out of breath just walking and had to give up the job she loved, as a care worker for people with dementia. With the right cardiac tests, she was at last diagnosed with pulmonary arterial hypertension.
Sarah now uses oxygen at home to manage her breathlessness. She says: ‘I was told that I’d have had a better response to treatment if I’d been diagnosed earlier. I’m angry that the health service missed so many opportunities to fully investigate what was wrong, even though they had all the equipment ready to do the tests and my symptoms were only getting worse. I just felt like there was no one there for me.’