Every moment counts
Lorraine & Allan’s story
Our names are Lorraine and Allan and we’re from Aberdeenshire. We lost our father and uncle to pulmonary fibrosis, and our mother was told the condition could be genetic but there was no testing to prove this. Here’s our story.
We have now both been diagnosed with pulmonary fibrosis..
Receiving a terminal illness diagnosis is a life-altering moment, accompanied by a whirlwind of emotions. We have both accepted coming to terms with this diagnosis and are focusing on the time we have and how to make it meaningful.
Lorraine’s story
I was diagnosed with pulmonary fibrosis when I was 48. I was very active, working full time for an oil company whilst also managing my livery yard, riding and competing horses. I began to struggle with fatigue, and at first I thought I might have a virus, and so did my GP. I advised my GP that my father had died of idiopathic pulmonary fibrosis and the GP didn’t know what this was. I then asked to be referred privately, where I had a scan and a consultant confirmed that scarring was visible.
I had never really given idiopathic pulmonary fibrosis a thought following my father’s and uncle’s deaths, I was young, it was not until my mum mentioned the cough I thought back to how dad was. Knowing what we know now, my father had the signs of idiopathic pulmonary fibrosis a couple of years before he was diagnosed. I cared for him, so I know first-hand what this disease does to a person.
Through Action for Pulmonary Fibrosis, I joined the Grampian Support Group and soon found myself volunteering as secretary. The support I’ve received through the group has been amazing, and it’s a wonderful community to have. It helps me keep moving forward.
Allan’s story
When I was 53, I developed a cough, and after Lorraine’s diagnosis, I knew not to ignore it. As Lorraine’s consultant was aware of our family history, I saw the same consultant when my symptoms started to appear.
Having previous personal experience of idiopathic pulmonary fibrosis meant we were aware of some of the characteristics, and we did not ignore the signs.
Idiopathic pulmonary fibrosis is a journey with very little understanding, treatment support and after care.
In 2024 I had a tough time with chest infections, so I’ve been referred to the transplant team in Newcastle. Lorraine was the one providing the nagging on the days I was low. I don’t think anyone but my sister could do that for me, we’re there for each other on so many levels.
We’re both taking part in a drug trial and didn’t hesitate to get involved. We encourage anyone with pulmonary fibrosis to visit the Action for Pulmonary Fibrosis website, explore current research, and consider taking part.
Living with pulmonary fibrosis is a journey of physical and emotional challenges for us - breathing is no longer an unconscious act but a deliberate effort. Simple activities such as walking or climbing a flight of stairs leaves us breathless and fatigued. There’s a sensation of tightness in the chest that mirrors the act of breathing through a narrow straw. The coughing is distressing; as is the constant irritant feeling to cough. We have good days, and bad days.