Trish is someone who always believes the glass is half full and it is her positive outlook that has continued to guide her after being diagnosed with Pulmonary Fibrosis (PF) in 2023.
She was diagnosed after seeing her GP for a lingering cough in what she now describes as the week of “shock, awe and wonder.”
“I’m lucky that my GP screened early after my cough wouldn’t go away and investigated further. It is a story I hear often about people going back to their doctor or multiple doctors and not supported to explore further about what might be happening,” she shares.
“My grandson was born a few days after I was diagnosed and, with little knowledge about PF, I remember sitting there thinking that I wasn’t going to be around to see this new child grow up. I was in shock at my diagnosis, awe at being able to see my grandson be born and wonder at everything I still wanted to do.
“I’ve always been a positive person who sees the glass as half full and I knew I had to keep that outlook as I faced this.”
Trish was referred to see a specialist but, as is common for people diagnosed with a lung condition, the wait was long.
“There was a wait of six to eight weeks at a minimum. You are in this terrible limbo. You’re told not to look at the statistics online but without any other information that’s exactly what you do, and it isn’t a good idea.”
It was a friend who asked Trish, in the lead up to her first specialist appointment, why she wasn’t talking to someone at Lung Foundation Australia.
“I had a friend who was very into advocacy work and asked me why I wasn’t talking to Lung Foundation Australia for support and information as soon as my GP gave me my diagnosis. I didn’t know such a service existed,” she says.
“In the days following your diagnosis you go through a range of emotions and, you might not want to straight away, but you will need someone to talk to. I wish I’d known about them from the moment I was diagnosed. They provided me with relevant and accurate information to read in my own time and let me know I could call out whenever I was ready.”
“I couldn’t make plans because I was in limbo. It wasn’t until I spoke to the specialist care nurses at Lung Foundation Australia, looked at the information they sent me, along with what my specialist and I discussed and thought, ‘Okay, this isn’t as bad as I thought.’”
“I felt comforted.”
Trish believes every patient diagnosed with a lung disease should be referred to Lung Foundation Australia.
“There needs to be posters in waiting rooms across Australia and GPs need to be handing a flyer to patients.”
The inequalities aren’t fair
The delay in initial specialist appointments, support and treatment plans is something that ignites Trish ’s sense of injustice, especially in comparison to her experience being diagnosed with breast cancer in 2004.
“I was fortunate it was caught early and within a fortnight of being diagnosed I was having surgery and given information about the follow-up treatment plan for radiation. The idea that people diagnosed with a lung condition must wait so long to see specialist and longer to start treatment is absurd.
“I can’t believe it is 2025 and this is still happening. It isn’t good enough.”
Looking to the future
Trish ’s plans for retirement were sped up after her diagnosis.
“My diagnosis coincided with retirement plans so it gave me time to ramp up activities to improve and maintain my fitness and lung health,” she says.
“I had the time after 30 years of working to dedicate to accessing physical therapists, sports experts and rehab options. Now I do Pilates, jog, cycle and swim when I can. Not easy for someone who loves to read, research and write indoors for fun!”
Trish ’s PF is now managed by medication and lifestyle changes.
“I have time for volunteering, advocacy work and spending more time looking after my health.”
Travel is also on the agenda with Trish and her husband taking a holiday to Europe this year.
“I like to say my diagnosis is life threatening but it’s not terminal. I’m managing the illness and am all about trying to live a full life. I’m almost 65, I’m now a grandma, I’ve retired, and I’ve got fantastic friends. I feel lucky.”
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