Tony, 52, lives in south London with his wife who is a teacher. They have six children, aged between 18-28 and six beautiful grandchildren. Tony works as a train driver and shares his experiences of pulmonary fibrosis.
“I was at work when I realised what I thought was a cold was much more serious and I began feeling very unwell. I was admitted to hospital with a suspected virus, and a dangerously high temperature. After ten days in hospital and tests, they realised my lung function was impaired. Eventually, I was diagnosed with pulmonary fibrosis (scarring of the lungs) caused by Sarcoidosis.
“I’d never heard of the condition before. The doctor showed me a scan of my lungs and pointed the shadows on one of them. He explained some people with Sarcoidosis recover, but others are more severely affected, their condition gets worse over time and it can even be fatal.
“This news hit me like a tonne of bricks. Yet, aside from the various symptoms, I’ve found the hardest thing to be the lack of awareness and understanding from other people about lung scarring. PF isn’t visible until you’re on oxygen and it’s hard to explain to people how hard it is. Facing this burden on top of my disease is isolating and having to justify my health needs when I look OK is exhausting.
“I’ve been a train driver for 16 years. I love my job and it's incredibly important to me. If I manage my condition well, with the right support, I can work and contribute fully.
My family is a huge motivator and support to me. Finding APF has been a lifeline and I’m passionate about helping others in a similar situation."
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