Early diagnosis and a positive outlook: Bill’s story
In 2015 Bill Van Nierop received the confronting news that he had Pulmonary Fibrosis and may not live longer than the next two years.
Fast forward eight years and Bill has walked 700 kms across rural NSW and kayaked down the Murray and Murrumbidgee rivers to raise much needed awareness and funds for lung disease.
Bill attributes much of his success in the battle against Pulmonary Fibrosis to being diagnosed early and having “a positive outlook”.
“I had a bout of pneumonia and having a very proactive GP, rather than just listen to my chest and say, off you go, she sent me to have a CT scan which resulted in the start of this journey.”
“From the initial scan to blood tests and then a lung biopsy, it was a scary time and quite numbing to be told you have a lung disease that is considered terminal,” he said.
Pulmonary Fibrosis causes the tissue around the air sacs within the lungs to become thickened and scarred, making the lungs stiff, causing difficulties in breathing and impeding the supply of oxygen to the bloodstream.1
Shortly after diagnosis, Bill was provided access to a new form of treatment that was being trialled in Australia and continued to receive this medication for the next five years. When the disease progressed rapidly in 2021, his only remaining option was lung transplantation.
“Going from having the disease, managing it with a medicine to being told that your life expectancy is months, not years, to being assessed and waiting and knowing that not everybody gets to a transplant – it's mentally challenging,” he said.
“Everything about a lung transplant is traumatic, but that’s all behind me now and I have two new lungs that have made the world of difference.”
Throughout this journey, Bill has been a staunch advocate for people with lung disease, raising community understanding and awareness, as well as more than $250,000 for medical research.
His words of advice to people living with Pulmonary Fibrosis and other forms of lung disease are to ensure they receive the right care and support from the right people.
“I've always said to my GP how grateful I was that she was proactive, because I've seen other people's experiences when the diagnosis was delayed or missed altogether.”
“The doctors who have been by my side from the get-go have been amazing. They really are partners in my journey, which I’m confident has many more chapters to go.”
Reference:
1. Lung Foundation Australia. Available at: https://lungfoundation.com.au/patients-carers/living-with-a-lung-disease/pf/overview/