Fast forward 18 years, Mr Clunies-Ross became an organ recipient in an operation at Royal North Shore Hospital (RNSH). The kidney transplant changed his life.
That’s why DonateLife Thank You Day on Sunday November 19 is so important to him.
Mr Clunies-Ross was first diagnosed with idiopathic membranous nephropathy in 1988.
There is no known cure for the disease, which occurs when the small blood vessels in the kidney that filter wastes from the blood become inflamed and thickened.
As a result, proteins leak from the damaged blood vessels into the urine, which can cause kidney damage and ultimately lead to kidney failure.
A year later, Mr Clunies-Ross went into remission but in 2008, his kidney deteriorated.
“It was like coming down with the flu and having it for five years. Every day is a struggle to get out of bed,” he said.
“You just forget about what it feels like to be healthy and you only realise how sick you’ve been when you get better.”
Without hesitation, his surviving sister Lynette offered her brother one of her kidneys, but unfortunately their blood types meant this was not possible.
In November 2015, Mr Clunies-Ross received the call that a donor kidney had become available.
He was one of 29 kidney transplants at RNSH that year, with 37 in 2016 and 20 in 2017 to date.
Several months after the transplant, he was feeling on top of the world, however, his sister Catherine was still in the back of his mind, as well as the difficult decision his mother made to donate her daughter’s organs.
“It was good we were able to respect her wishes, she would have wanted to be an organ donor and knowing what a difference it would make; she knew what it would mean for the recipients,” Mr Clunies-Ross said.
“We take comfort in the fact that my sister lives on in someone else and hopefully gave life to other people – it’s a beautiful thing.”
Specialist organ donation nurse at RNSH Sandy Taylor is often one of the first points of contact for families like Mr Clunies-Ross’.
She said the process could be made easier if people made their intentions known to those close to them.
“To support families during the end of life care of their loved one is a position that I consider a privilege,” Ms Taylor said.
“Donation is a personal decision for everyone and it is important to take the time to consider your own wishes.
“For the families I support that already know their loved one’s decision, it provides comfort to families in knowing what their loved one wanted.”
Mr Clunies-Ross is now considering how he can thank the people who made the decision to donate their loved one’s kidney and save his life.
“I will write a letter but it will come from not just me, but my wife and daughter who are also so grateful for this gift,” he said.
“I know the letters my mother received, and I got to read, about the recipients from my sister’s organ donation - while they were terribly emotional to read, they were very comforting.”
Almost two years after a stranger’s ultimate act of generosity, Mr Clunies-Ross said everyone had noticed the difference in his good health.
“A lot of people I deal with as clients are actually ex-work colleagues who I’ve known for 20 years and have known me through the journey,” he said.
“Just this morning I met with an old friend and colleague who just said ‘you look fantastic, I can’t believe the difference’ – and I feel great.”
To read more stories like Eddie’s, explore #ThankYouDay on Facebook, Twitter and Instagram. Those touched by the reality of organ donation are being encouraged to share their stories.
Picture: Eddie Clunies-Ross with his sister Catherine (middle) and Lynette (right).
Facts about organ donation:
- Around 1,400 people on Australian transplant waiting lists at any one time, and a further 12,000 people are on dialysis”
- Last year, a record 1,713 Australians received a transplant, thanks to the generosity of 503 deceased and 267 living organ donors and their families.
- 33 per cent of Australians are currently registered to give the gift of life but surveys reveal 67 per cent are prepared to donate - they just haven’t got around to signing up.
- Registering to be an organ or tissue donor is quick and easy at donatelife.gov.au