“Awareness of Pulmonary Fibrosis is so low, I still find myself having to explain my condition and that it is chronic and life limiting. I hate to make the comparison but if I had cancer it would be a different story - there’s lots of awareness and clear support in place to those affected and their families. Finding APF has really given us the support we’re looking for.”
Gail, from Carnwath in South Lanarkshire was in her 50’s living a busy and active life. Working full time as a bar manager in a local golf club she regularly did step classes and lots of walking. Towards the end of 2018 she noticed the long shifts were taking their toll. She’d get out of breath going upstairs and had developed a dry cough. A trip to her GP in mid 2019 resulted in a series of tests over a period of time including a CT scan and x-ray at hospital. It took until after the pandemic in March 2021 to eventually get the diagnosis she’d been dreading. Gail had the lung scarring condition idiopathic pulmonary fibrosis. Gail knew a bit about ILD as her mother had sadly died from a type of lung disease - and she knew what could be ahead for her.
Gail went on anti-fibrotic medicine in April 2021, she had side affects but persevered with them. Earlier this year, everything took a turn for the worse. A chest infection in February resulted in Gail being admitted to hospital with a lung exacerbation. The hospital looked at her CT scan which showed a big deterioration. Her lung fibrosis had taken a leap she wasn’t expecting; her life and routine changed so suddenly; she was now unable to continue working her shifts and provide childcare for her daughter by looking after her grandchildren. Small tasks now became increasingly difficult and she had to find new ways to adapt and cope.
She commenced oxygen therapy, received some support with equipment in her home from Occupational Therapy and was put in touch with the transplant team at Newcastle. It’s now a waiting game for Gail and she’s hopeful to hear from them soon so she can undergo assessment and eventually be placed on the active list.
The importance of family
Gails daughters, Louise and Suzanne, have been a lifeline for her during these difficult times. Both daughters searched for information and support and found Action for Pulmonary Fibrosis. In turn they are now fundraising for the charity, and the whole family is passionate about raising awareness of pulmonary fibrosis.
Louise and Suzanne said:
Our Mum inspires us by taking each day as it comes…whether it’s a good day for her, an okay day or an awful day. We think this is so important when living with IPF as how you think and feel can vary day-to-day, and that’s okay! And perfectly normal and to be expected.
"Mum has a great deal of strength within that sometimes she can’t recognise herself. But WE can see it. She is so strong! We are all so proud of her for coping and managing with her diagnosis and symptoms as well as she has. And throughout it all she continues to be ‘our Mum’ - so caring, thoughtful and loving. As a family we all keep appreciating each day together, supporting each other, making memories the best that we can and of course remaining hopeful that she will be assessed for a double lung transplant soon.
Mum hopes that by sharing her personal story and experiences it might bring a sense of comfort and community to others going through similar. That in itself is inspirational, that even when she is challenged physically and mentally she still wants to help others. That’s our Mum.”
"..As a family we all keep appreciating each day together, supporting each other, making memories the best that we can and of course remaining hopeful that she will be assessed for a double lung transplant soon. The respiratory team at Monklands Hospital have been amazing throughout this whole process and we are so grateful for their ongoing care.“