August 21, 2017

Marion’s story

The loss of her father and two brothers to Idiopathic Pulmonary Fibrosis (IPF), her own diagnosis of IPF and a double lung transplant has led Marion on a journey of gratitude leading to the desire to help others and to raise awareness of the disease.

Marion tells her story…

I received my gift of life in 2009 at the age of 62, just two weeks after being listed for a double lung transplant and, according to physicians at The Prince Charles Hospital, Brisbane, just 24 hours before my likely death. My father and eldest brother, who was only 47, died three months apart in 1990 and my surviving brother died in January 2014, aged 68.

We had all been told, “You have IPF, there is no known cause, no cure and the only effective treatment is a lung transplant”.

I was the lucky one and I received the gift of life, but there is still a cloud over our family. Will this brutal disease affect the third generation of our family?

Following my IPF diagnosis, I resigned from my career in journalism to prepare physically and emotionally for what was ahead. I headed for The Prince Charles Hospital in Brisbane for a consultation with the Director of the Queensland Lung Transplant Service and, by the end of the initial visit, I had faith and hope that things would work out.

I took part in a worldwide clinical trial but my condition deteriorated towards the end of 2009. I was on the transplant list for only two weeks when my IPF exacerbated to the extent that I was admitted to a local hospital. I was in the ICU unit struggling to breathe when word came through there was possibility of a transplant.

An ambulance transferred me to The Prince Charles Hospital and, after some hours, a transplant coordinator told me the lungs were a match and surgery would proceed. I will never be able to find the words to describe the euphoria of waking from anesthetic with my new lungs.

I had life and I was not going to let it go. I did not want to let anyone down – my family, my donor and their family, my surgeon and physicians and their teams.

I left hospital after 11 days and walked into beautiful sunshine, feeling so honoured, privileged and grateful to have the lungs that had belonged to another human being. While transplant is considered to be an effective treatment and not a cure, I am so grateful for my donor and his or her family.

I support IPF patients through my involvement with Lung Foundation Australia’s IPF Peer-to-Peer Support Group and I am one of the original five volunteers.