The establishment of the new Parliamentary Friends of Kidney Health provides a chance to increase understanding and awareness, to strengthen representation for the kidney community and to mobilise advocacy for policy commitments that will make a difference, save lives and support programs that enable us to avoid a significant burden on the health system.
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As the numbers are growing at a rate our health system can't keep up with, Australia must focus on early detection and prevention now. Doing nothing is not an option. 90% of Aussies with signs of kidney disease don’t know about it.
Together, we can save them from the burden of dialysis and reduce the toll on our health system and economy, simply by focusing on early detection and management. In fact, for every $1 invested we can save the health system $45 in costs. When demand is so much higher than supply for dialysis and organ transplant, the solution has to be early intervention, stopping progression to kidney failure.
Early diagnosis and treatment of kidney disease is simple, cost effective and critical. Help us make it happen.
“Both my children, who also have kidney disease, were on dialysis at home, and while that has some advantages, it meant no outings whatsoever past 5pm. The restrictions on life are extremely isolating, taking a very heavy physical and mental toll on everyone.”
Lorelei and Peter Murko share an unusual bond. Together, they have eight kidneys. The father and daughter both have focal segmental glomerulosclerosis (FSGS) — a disease that causes scar tissue to build up in the kidneys' filters. It can lead to permanent kidney damage and even failure.
For the Murkos, the first 'failure' occurred in 1983 when Peter was just five and the first donor was his mother. Twenty years later, the first donated kidney failed for Peter. He then began preparing for a second transplant, donated by his father. Despite his concerns, his second transplant was successful and for 13 years he lived a relatively normal life. In 2016, Mr Murko's heart broke again when the kidney donated by his father began to fail. He was put on overnight peritoneal dialysis where he would hook himself up to a machine to filter his blood. This time, his wife Jenny volunteered her kidney, which unfortunately wasn't a match, so they joined the Australian Paired Kidney Exchange. Under the program, a recipient with a donor who is not compatible, like Jenny, is matched with another donor-recipient pair in the same situation.
Unfortunately, during this time their eight-year-old daughter Lorelei began retaining a lot of fluid. She was lethargic, headachy, her eyes were puffy, and in 2018 was also diagnosed with FSGS. Like her father, Lorelei suffered a complete kidney failure. With this news, Lorelei was added to the deceased donor list, with Peter waiting for the kidney exchange to be activated.
"I took it particularly hard, I blamed myself," Mr Murko said. "And when we found out it was a genetic mutation I passed down to her, it was pretty tough to take."
In May 2018 the exchange was activated, and in August Jenny altruistically donated — via the Australian Paired Kidney Exchange — to Peter. With the surgery a success, Peter spent two months recovering at The Royal Prince Alfred Hospital in Sydney. Then Lorelei got the call.
"Mum and Dad picked me up and I had to get everything ready, and then I went to get my surgery. All I remember is that I woke up with lots of tubes and I was in heaps of pain." Lorelei said.
Like her father and other kidney recipients, Lorelei stayed close to the hospital for almost two months to have her blood tested daily. Now she is doing well and enjoying her childhood. Peter worries that one day she'll have to have another transplant, but is glad she is well prepared and has the right mindset for it after everything she has been through.
Jodie Jeeves from Victoria knows first-hand the devastating effects CKD can have. Tragically, Mrs Jeeve’s husband Shane, a passionate supporter of Kidney Health Australia’s efforts to promote early detection, died from a heart attack in December 2020, after being diagnosed with kidney disease nine years earlier. Shane was just 48 years of age and left behind his wife and five daughters.
Mrs Jeeves said, “Right up until he was diagnosed, Shane was a fit and active person. His kidney disease was only picked up through discovering he had high blood pressure. Our life really changed when he reached kidney failure and had to have regular dialysis to survive. Because of that, he was really passionate about promoting early detection and preventing other families going through what he went through. Our lives will never be the same now that he’s gone.”
Read more personal stories from our kidney community here.