Long Kayak for Lungs 2 launching 28 August
“Without a transplant, I wouldn’t be here now.”
Bill Van Nierop is a loving Brisbane husband, father and grandfather, and a double lung transplant recipient. He is on a mission to spread awareness of lung disease and raise funds for research that improves outcomes for those impacted by lung disease and transplantation. This year he will be completing the Long Kayak for Lungs 2 - his third significant mental and physical challenge to do just that.
At the beginning of 2015, Bill was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) – a progressive lung disease with no cause or cure. Upon diagnosis, he was told he had a 50% chance of surviving the next three years and a 20% chance of seeing another five. He refused to accept this fate and fortunately was placed on a drug trial. Prior to his diagnosis, he led an active and healthy life, walking most days, so the then 63-year-old was determined to stay as healthy as he could, so that one day he might be considered for a lung transplant. But for Bill, he not only wanted the best outcome for himself and his own family – he wanted to help others with lung disease who were experiencing a similar journey to his own.
Lung disease impacted our lives, but I wouldn’t let it impact how we lived our lives.
Bill found there is a lack of community awareness and understanding of IPF and other lung diseases and, consequently, a lack of empathy. As a result, he has undertaken several fundraising and awareness-boosting activities, including the Long Walk for Lungs in 2017 – a 700 km walk, and the Long Kayak for Lungs 1 in 2018 – a 2200km kayak down the Murray River. Combined, these activities raised over $210,000 for the Lung Foundation Australia.
Through his fundraising activities, he also hoped to further the awareness and community understanding of lung diseases, remove the stigma often linked to those with a lung disease, and help change community attitudes toward this insidious disease group.
He completed both of these feats with approximately 50% lung function.
“If you were to go and run up and down stairs for an hour breathing through a straw, you’d get some idea of what it’s like living with IPF.”
In 2021, the condition of Bill’s lungs deteriorated more rapidly than it had been, and he completed an assessment for a lung transplant. Two weeks after being placed on the transplant waiting list, he received the call to go to the hospital.
Bill says adapting to his new life-saving lungs and understanding the risks associated with the transplant has been challenging at times, but he is incredibly grateful for being given that second chance in 2021.
"You look healthy on the outside, but it’s not a panacea and has its own set of problems that you must live with and get on with it. I know about organ rejection, I know about skin cancer and everything else, but that’s not going to interfere with what I’m doing tomorrow. You just live in the day."
Throughout his treatment, Bill was a patient of The Prince Charles Hospital, Australia’s leading cardiothoracic hospital. During his time in the hospital’s intensive care unit recovering after his double lung transplant, he decided to set a new goal for himself, to complete a second Long Kayak for Lungs and this time he would tackle the Murrumbidgee River, Australia's second longest river.
Bill is training hard for his upcoming 1440km kayak and this year has chosen to partner with The Common Good, an initiative of The Prince Charles Hospital Foundation where he is hoping to raise $50,000, supporting over 1,041 hours of research into IPF.
“I HAVE BEEN GIVEN A SECOND CHANCE … AND I AM NOT GOING TO WASTE IT.”
Bill lives on Brisbane’s beautiful bayside, and is married to Lesley with three children and five cherished grandchildren. Bill lives a wonderful, active life with his family and wishes to use his voice and advocacy to make this possible for others impacted by lung disease.