Yvonne Bali
Yvonne Bali2007 Metropolitan Hero of the Year Nomination Baton Relay Scoop Article Jun-Aug 2008 HBF Outlook Article Dec 2008 A Random Act of Kindness experience for Yvonne It was the plight of the teenagers around her that Yvonne Bali found most distressing.
"They were mainly 15 and 16 year olds, children with cystic fibrosis," she recalls. "Taken away from their families, their peers, their friends, their animals... 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. I saw some of them pass away because they weren't in their normal environment."
The year was 1997 and, like these teenagers she was so concerned about, Yvonne Bali was in Melbourne, thousands of kilometres from her home in Perth, waiting for a lung transplant at the Royal Alfred Hospital.
It would be a long, expensive and often heartbreaking wait. A single mother, she was separated from her two children, Nicole, 17, who was doing a double major at university, and Grant, 16, who had just started an apprenticeship.
They talked about their options as a family, and as much as it tore at her heart to know they wouldn't be with her, it was agreed they would stay home. They each thought she would only be away for about three or four months.
"I had to think about all sorts of things," 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 to worry about that."
Fired up by the injustice of having to be operated on in a strange city without her support network, she was already 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 children would have to suffer, that their standard of living would suffer..."
They offered to fly one of her children over to Melbourne once the transplant was underway. "One of them," she said, incredulous at such a suggestion. "Which one,” she asked them. “You tell me who's going to make the call of which of my children should come, because I'm not.” In the end they agreed to fly both over. The acting CEO had a pager and as soon as he got the message that it was on, it was agreed they would put my kids on the plane."
Yvonne's mother stayed with her in Melbourne to try to help her through it. "My stepfather stayed home with the animals and helped keep an eye on my kids, but after three months he couldn't stand being away from my mum any longer. He came over, too."
With her antibodies too high for a transplant, Yvonne had to go on a drug to bring them down. The months dragged on. "It was important to be as normal as I could," she says, her "normal" being helping others at a time when most of us would be wallowing in self-pity. "I would go to the Kidney Foundation on a volunteer basis. I worked on a bike ride around Australia, organising dialysis at stops and accommodation and any media. And I would take my oxygen with me to speak at schools through Rotary."
Yvonne was also hitting the phones to help coordinate another Ball back in Perth to raise funds for her ultimate goal. She was determined that no others should have to go through the same ordeal; she wanted a lung transplant unit in her home state, even though she knew it would be too late for her.
It was a campaign that had begun not long after she was diagnosed with a degenerative lung condition in 1989. If that news wasn't devastating enough for a mother raising two children on her own, the knowledge that the transplant required to save her life would have to happen so far from her loved ones was almost too much to bear.
"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 a Heart & Lung Transplant Foundation and make a lung transplant unit a reality in WA.
Yvonne Bali is a petite, attractive woman with a gentle way about her. But she is clearly built of stern stuff. Neither her disease nor bureaucracy could prevent her from reaching her goal.
She is quick to praise the supporters that came to the cause early, particularly builder Garry Brown-Neaves, of Webb & Brown-Neaves, whose commitment to a charity home in 2002 proved the financial breakthrough she needed.
"I couldn't believe it when he told me the site would be in Mosman Park and then I thought 'well, there's Mosman Park and there's Mosman Park', but it was on prime land," she recalls. "I remember going down to the site and standing in the middle of it and thinking 'this is it, we're going to do it, the unit is going to happen'."
And she was right. With the charity home, the momentum gathered pace. It was time to lobby the 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, the Lung Transplant Unit at Royal Perth Hospital was given the go-ahead.
In November 2004, the same year the Heart & Lung Transplant Foundation of WA Inc was set up, the unit performed its first operation. Yvonne was understandably euphoric. "My dream had come true."
Gordon Black, a retiree from Dunsborough with legionnaire's disease, was the lucky recipient of WA's inaugural single right lung transplant. He never forgot it. Yvonne says Gordon and his wife Rona became tireless supporters of the Foundation, regularly raising the foundation's profile - and vital funds - in the South West.
Since then, the unit has performed more than 50 transplants. It has one of the highest success rates in the world, let alone Australia, something Yvonne is understandably proud of. But more than that, she's overjoyed that those patients haven't had to be separated from their families at such a frightening and emotionally challenging time.
As we sit and chat it is only days away from the ninth anniversary of her own transplant. Does she ever get tired of doing these interviews, of talking about her ordeal? "Not at all, it's very cathartic for me and it's important to share the story too. We need more donors and donor families need to know the difference their choice has made to people's lives."
Yvonne does a lot of speaking these days; her story moves people but also motivates them to try harder, to never give up. She has clearly lived her motto: "You never fail unless you quit." "I never thought woe is me, not once," she says. "I was just glad it was me and not my children."
She is very proud of how those children coped with what must have been a truly frightening experience. "I don't think any of us understood how hard it would be," she says. "Nicole got two part-time jobs to help pay for running costs while I was away and there were lots of tearful phone calls. But they dealt with it much more maturely than I would have and they became closer because they had to rely on one another. I was a very over-protective mother and on reflection perhaps this had to happen to allow my children to grow, to be the citizens they are now."
Apart from the emotional drain on herself and her family, Yvonne faced huge physical battles, too. "I put on 30kg post-transplant," she says. "And the drugs really affect you... at one stage I grew black hair all over my face, I just wanted it off, it was horrible. The drugs can also make you extremely depressed and there was no psychologist available within the transplant unit to help you."
Then there was the huge financial cost. Before Yvonne was diagnosed with the disease she was the owner of three successful hair salons, she had her dream home in Mindarie and life was pretty good.
Only a few years later, she couldn't get to the mailbox without running out of breath. She had to sell her salons and re-train for an administration job. Incredibly, she worked throughout her illness at the Water Corporation, where she is still employed. And she says if there had been a unit here in Perth she would have continued, taking her oxygen to work each day, until she got the call.
Instead, after a forced 18 months away from her family she came home in December 1999 $98,000 in debt. The dream home had to go, too. "I remember being really sad and my daughter Nicole saying to me, 'don't worry Mum, it's served its purpose'. She's a wonder."
Yvonne says you cannot under-estimate how important family is in times of need. "When we were in Melbourne, because I was there for so long, myself, my mother, stepfather gave so many wakes, we got all the West Australian people together and took them to the chapel. It was so hard, but people were at a loss, they had no-one, so far from home. I couldn't let that keep happening."
This quiet achiever may not be able to go up steep hills and struggles with stairs, but Yvonne is not putting her feet up now that the foundation and transplant unit are well established. She wants to set up a paediatric transplant unit at Princess Margaret Hospital and a Transplant Institute. To this end, she is urging more corporate to put their hands up to be good citizens.
"I'd like to get some of the big mining companies on board. They've got so much money now and there is so much they could do." And you can be sure Yvonne will keep trying to help them do it.
