Despite the pain and the concern of her doctors, Senator McCarthy was not surprised by the episode. Four years ago, she was diagnosed with polycystic kidney disease. The chronic disease means she has enlarged kidneys with thousands of cysts.
The Yanyuwa woman, from Borroloola in the Gulf of Carpentaria, has not spoken publicly about her diagnosis until now.
“You get a lot of time to think when you’re sitting on a hospital bed. It is the anniversary of my mum’s passing – 11 years [ago] on Saturday. So I’m thinking a lot about her and the missed opportunities for her. I don’t want to see that for other Australians. I certainly don’t want to see that for my sons, if they have to experience the same thing.”
There is no cure for the disease, which is also associated with kidney infections, high blood pressure and pain. McCarthy says it will get worse over time, eventually requiring dialysis or a kidney transplant.
“It’s like knowing you’ve got a bit of a sentence in front of you.”
Polycystic kidney disease is a genetic condition. It is one form of chronic kidney disease, which disproportionately affects Indigenous Australians. Senator McCarthy’s mother died of renal failure and her brother is on dialysis.
“I realised from a cultural position, this may be the opportunity to use what I suffer as a voice for those who are actually far worse than me,” Senator McCarthy said. The former TV journalist was also a minister in the Northern Territory government before her election to the Senate in 2016.
“It’s such a common situation that we’ve got to talk about it more and put the research into it. To make sure we have the dialysis units but also the option of transplants for First Nations families across the country.”
According to the Menzies School of Health Research, Indigenous people develop end-stage kidney disease at up to 30 times the rate of non-Indigenous people. The Menzies School also says the death rates from kidney disease are eight to 10 times higher among Indigenous Australians than other Australians. Indigenous Australians are also 14 times more likely to need in-hospital care for kidney dialysis.
Despite this, a recent COAG health ministers’s report noted that non-Indigenous patients are nearly four times more likely to receive kidney transplants.
“Transplants are difficult for anyone, but for First Nations people it is even worse,” Senator McCarthy said. “The statistics are not good in terms of First Nations people being offered organ donations.”
Senator McCarthy manages her PKD with swimming, a healthy diet and rest. She tries not to sit for long periods of time, because the pressure on the cysts is painful.
Senator McCarthy was planning to be at the annual Garma festival in Arnhem Land over the weekend. Instead, she was still in hospital in Canberra.
As she looks forward to returning home to family, she wants to encourage others to register for organ donation. According to Donate Life, there are 11,000 Australians on dialysis, many of whom would benefit from a kidney transplant.
“I think it’s really important that all Australians get on broad with thinking about what donating an organ is all about. And the gift of life.”
What is polycystic kidney disease*?
PKD is a chronic condition that causes cysts to develop in the kidneys and sometimes elsewhere in the body. These cysts can cause various symptoms and they may cause the kidney to stop working properly. It is an inherited, genetic disease, which affects about 25,000 Australians.
Symptoms can include high blood pressure, chronic pain in the back, sides or abdomen, blood in urine, urinary tract infections, kidney stones and cyst infections. Treatment varies, depending on where the disease is up to. In later stages, it can include dialysis or kidney transplant.
*There are two types of PKD, a more common “adult” version and a rare “infantile” version. This information relates to the adult version.
Source: PKD Foundation Australia, Kidney Health Australia
Judith Ireland is a political reporter for the Sydney Morning Herald and The Age, based at Parliament House