Waiting in Melbourne’s Alfred Hospital for a lung transplant, Yvonne Bali was distressed by the plight of the sick teenagers around her, far away from their families in Perth.
“They were children with cystic fibrosis, taken away from their families, their friends, their pets… There were behavioural problems, the usual teenage stuff as well as them reacting to their situation. They had a lack of motivation and weren’t doing their exercises. Sadly, I saw some of them die.”
It was 1997 and, like these teenagers, Yvonne was thousands of kilometres from her home in Perth, waiting for a transplant. It was a long, expensive and often heartbreaking wait. A single mother, she was separated from her two teenagers while she waited for the call that would change her life.
“I had to think about all sorts of things. It was very confronting,” Yvonne recalls. “In the event that I died I had to cost out how much it would be to bring my body back to Perth, what airline would do it and if there was enough money in the bank to cover it; and if there would be enough for the funeral. I was also educating my children and paying the mortgage so I had that added worry too.”
Spurred on by the injustice of waiting for surgery in a strange city without her support network, Yvonne started lobbying for change.
“I remember talking to the acting CEO of the Health Department and telling him how unfair it all was. If there had been a transplant unit here in WA, I could have kept working until I got the call (for the transplant), but the fact that this service wasn’t available meant my family was in upheaval.”
The department offered to fly one of her children over to Melbourne once the transplant was underway. “Which one?” she asked them. In the end they agreed to fly both over.
Yvonne’s mother and stepfather stayed with her in Melbourne to support her through the ordeal.
The months dragged on. She volunteered for the Kidney Foundation, taking her lifeline oxygen bottle along with her to speak at schools. She hit the phones to help coordinate a ball in Perth to raise funds for her ultimate goal. She was determined that no others should be forced to live away from their families while waiting for a transplant. She wanted a lung transplant unit in her home state for future patients.
Yvonne’s campaign began not long after she was diagnosed with a degenerative lung condition in 1989. ”There is no doubt that being away from your normal environment inhibits your recovery,” she says. “Even the surgeons say that.”
With the support of leading Perth surgeons including her own specialist Dr Robert Larbalestier, she set about raising money to set up the Heart & Lung Transplant Foundation and make a lung transplant unit a reality in WA.
Yvonne praised the supporters who came to the cause early, particularly builder Garry Brown-Neaves whose commitment to build a charity home in 2002 proved the financial breakthrough she needed. The momentum quickly gathered pace. It was time to lobby politicians again. As she told her story to then Health Minister Jim McGinty, she recalls there was a tear in his eye.
“A day later, Dr Larbalestier called me and asked if I was sitting down. He knew how long I had been working towards the goals of a lung transplant unit in Perth. The unit had been given the go-ahead at Royal Perth Hospital!”
In November 2004, the unit performed its first operation. Yvonne was euphoric.
“My dream had come true.”
Since then, Yvonne served on several boards, including the Heart and Lung Transplant Foundation, DonateLife and the Biotherapeutics Association of Australasia, which promotes best practice in the retrieval, preparation, storage and distribution of products for transplantation, diagnosis, teaching and research.
She was fiercely devoted to her family, especially her daughter Nicole, son Grant and five grandchildren, spending every moment she could with them.
Sadly, Yvonne passed away in September 2016 – 17 years after she received her life-saving transplant.
Respiratory physician and inaugural head of the WA Lung Transplant Unit Eli Gabbay said the chance of a lung transplant recipient living 17 years post transplant was less than 5 per cent. This is testament to Yvonne’s courage and amazing fighting spirit.
Yvonne will be remembered as a trailblazer, a champion for the transplant cause, an advocate for transplant patients and a remarkable, intuitive and intelligent woman.
Her selfless vision to relentlessly lobby for a lung transplant unit in WA has meant patients have been able to remain close to their families and supports for life-saving surgery.
Yvonne’s daughter Nicole Cox Bertoldo now sits on the Foundation Board.