John’s battle for breath
In just two short months my whole life has changed. I’ve stayed active, strong and fit since I was diagnosed in 2011 through swimming, walking and lifting weights every day. I used to participate in the Busselton Jetty Swim every year with good friends and was a voluntary firefighter with the Yallingup Rural Volunteer Bush Fire Brigade.
But now I get breathless doing everyday things like walking up a few stairs or taking a short walk. It’s become bad enough that I need support to breathe and maintain my fitness – I’m now on long-term oxygen therapy.
Oxygen therapy can be an emotional subject, not only from the perspective that I know my disease has advanced significantly but also, because it might label me as being disabled.
It would be easy to feel sad and frustrated not being able to do the things I used to do but I’ve had to flip things around and remind myself what I can do instead.
Hope through research
I can advocate for more research funding, education at clinical and public levels and share my challenges with IPF with you and others in the community. I want to help save lives and ensure others don’t go through my struggle.
But I have hope through research. Research through new drugs that are trialled by the clinical trials’ team at the Institute. I was lucky enough to trial Pirfenidone, which extended and improved my quality of life for a while.
This ‘extra’ time has meant I can spend more time with my family. I have a wonderful wife, three gorgeous kids and seven grandchildren. I’d love to see my grandkids grow up. For this we need research.
Life-saving research is critically underfunded
Life-changing IPF research that Professors Yuben Moodley and Steve Mutsaers are undertaking at the Institute is vital as we still don’t know what causes the scarring of the lungs also called fibrosis.
But their research is severely underfunded, with lung disease research receiving only one per cent of the Australian charity medical spend.
It’s only through your support and the great work that the Institute is undertaking that we can look into causes, treatments and a cure for IPF and other lung diseases.
Thank you for reading my story.