Ballarat retiree Lyn Alexander considered herself a “fit and healthy” registered donor when she was diagnosed with idiopathic pulmonary fibrosis only a few years ago.
The rare lung disease causes tissue in the lungs to become stiff and scarred for an unknown reason.
“My lungs were just going hard and shrivelling up, it was a bit of a slow progress,” Lyn said.
“They got me on the waiting list (for a transplant), but they told me I would have a long wait because I was small.”
When Lyn’s condition deteriorated and she was put on oxygen, doctors instead matched her with a larger lung, moving her windpipe to help it fit.
“Normally size has to be a match, along with blood and tissue type, but the way that I was going, my time was running out,” Lyn said.
Since the transplant, Lyn has experienced no setbacks and is appreciating the small things she can now do again.
“To be given a second chance at life, you just value every day and you just never stop thinking about the donor and the family,” she said.
“While they were grieving, (they gave) the selfless act of saving someone else’s life. I will just always be grateful.”
Lyn is just one of the many transplant recipients, carers and loved ones sharing their experiences as part of a local catch-up group set up by Ballarat Health Services nurse donation specialist Larna Kennedy.
The catch-ups, which began in March, provide a safe space to share stories, hear from guest speakers and socialise over afternoon tea.
“No matter how much support transplant recipients get from us clinicians, the support they get from each other and hearing stories from other people is immeasurable,” Ms Kennedy said.
“People are at different stages of their journey. There are some members who are very new and had their transplant around six months ago, all the way up to 12 years post transplant.”
Yvonne Mackintosh attends the catch-up with daughter Nicole, who had a double-lung transplant in January 2011.
The 41-year-old was diagnosed with cystic fibrosis at six weeks old and her mother Yvonne has played a carer’s role ever since.
Nicole’s independence has always remained important to her and, while she still has reduced lung function, she manages to live in a unit not far from her parents.
“She doesn’t like mum interfering or telling her what to do, but when she needs us we’re there for her, whether it’s the housework or hospital check-ups,” Yvonne said.
“I don’t think I’ve ever heard her complain, she has just accepted her life day by day.
“In a way our role as carers has been quite an easy one – but it doesn’t stop you from worrying or being concerned as parents.”
Yvonne said she welcomed a support group in Ballarat and had been heartened to see the friendships developing.
“It is really filling a need and will continue to do so,” she said.
“As word spreads more will feel like they can come and talk because people are often very hesitant, it can be very confronting.”
The Ballarat Transplant Recipient Catch Up Group is held every second month in the Long Room at Oscar’s Hotel and Cafe Bar. For more information contact Larna Kennedy via email.
