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“I started to experience breathlessness and a persistent cough at 35yrs. It took over two years for me to get a pulmonary fibrosis diagnosis – it was extremely distressing being unwell with no explanation and delayed treatments which could have significantly changed my life.”
Fiona, 42yrs, gave birth to her son Harry (1yrs) with pulmonary fibrosis. She works as a Global Data Ingress manager at CGA NIQ for some of the world’s largest food brands. Fiona’s currently on the lung transplant list.
"I started experiencing tiredness and breathlessness which, to my 35 year old self, felt like I just needed to improve my fitness. This was coupled with a cough I just couldn't shift. The breathlessness started to restrict what I could do without stopping to catch my breath. I was diagnosed with pulmonary fibrosis at 37yrs and felt utter despair and devastation. I was told in a very fleeting appointment and left reeling and feeling lost.
I was so excited but cautious to be pregnant with Harry. The increasing breathlessness was challenging and I ended up in a wheelchair and on oxygen. I was exhausted, worried about my health and very ready to welcome our little one. Harry arrived safely into the world in Oct 2022.
Harry has brought us untold joy, he is a very welcome distraction from the awfulness of this terminal disease - little ones are so good at keeping you in the moment. The support from my family and friends has been invaluable.
APF were especially supportive. I phoned APF in despair as I was really struggling post-birth. APF supported me in sourcing a carer who made a huge difference to my sense of independence. I was so thankful. APF helped at a time when I needed it most.
I would say to someone struggling to come to terms with a diagnosis, remember the rawness you feel when initially diagnosed will lessen, you will find ways to adapt, strategies to cope and you will find a way to live your life, live it well and find joy in the little things that you can do."
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