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Changing the chronic kidney disease landscape

"The physical, mental and financial burden of chronic kidney disease can be overwhelming for individuals and their families. That’s why we want more people diagnosed earlier so they can prevent progression to kidney failure and can maintain a good quality of life." - Chris Forbes, Kidney Health Australia CEO

You can lose 90% of kidney function with no symptoms. No wonder 1.8 million of the 2 million Aussies who have markers of kidney disease don’t know about it.

Why early detection is critical:

  • Chronic Kidney Disease (CKD) is a condition in which there is a gradual, but progressive lowering of kidney function to a point where the kidneys are unable to sustain life (end-staged kidney disease or kidney failure).
  • Over the last 50 years, simple measures such as blood pressure and blood sugar control have had a positive impact on slowing the progression of CKD.
  • To date, the priority has been on preserving life once a person’s kidneys had failed with costly kidney replacement.
  • CKD is under-diagnosed in primary care, especially in people with hypertension.

Canberra World Kidney Day launch

On World Kidney Day, Thursday 9th March, we headed to Parliament House in Canberra to make some noise about early detection and kidney disease in Australia. We launched a ground-breaking new report that highlights the issues and solutions.

Download summary report Download full report

Kidney Warrior Stories

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.”

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.


Take the Kidney Risk Test

Check your risk of kidney disease by taking our simple Kidney Risk Test, and we will help you understand if you need your kidney health checked by your GP.

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