What are the options for chronic kidney disease sufferers and what does the future hold? Suzanne Harrison speaks with those at the coalface.
On Christmas Day 1996, Shaun Johnson was admitted to hospital with severe stomach pain. Doctors immediately suspected it was kidney stones. Fit, young and a new father, they were surprised to learn this was not the case.
In fact, Shaun’s kidneys were functioning at only 10% and his life would never be the same again, a story sadly familiar to many more people now than ever before.
Kidney disease in Australia – and the world over – is becoming more prevalent, affecting 1.7 million Australians, while a staggering 1.5 million are not even aware they have it, according to Kidney Health Australia (KHA).
One in three Australians are at increased risk of kidney disease, with factors including diabetes, high blood pressure, smoking, obesity, family history, being over the age of 60 (or over the age of 30 if you are of Aboriginal or Torres Strait Islander origin) and have a previous acute kidney injury or history of heart problems.
Shaun is far from being a typical chronic kidney disease (CKD) candidate. He worked a physical job and was a keen footballer, wasn’t overweight and didn’t smoke. However, he and his wife Michelle were soon told he had “the bad sh** luck disease”, as Shaun now calls it, more formally known as glomerulonephritis, an inflammation and damage to the glomerulus, the filtering part of the kidneys
As a teenager, Shaun’s father suffered from bowel cancer, so at that time, doctors testing his vitals found he had high blood pressure. At the time, Shaun was young and healthy, and doctors were more interested in his bowel health. Glomerulonephritis isn’t common, so it went unnoticed.
“It’s not hereditary,” Shaun told Medical Forum, nursing a coffee with Michelle and a picture of good health at the age of 54. He is doing well with a second successful kidney transplant and runs WA-based social and support group Dialysis and Renal Transplant (DART).
“So, it came as a shock. I realised I’d been operating on only about 10% kidney function since I was probably 15.”
Advised he would need dialysis within two months, Shaun decided first on a dramatic shift in his diet, moving to very low protein for two years before starting hospital-based dialysis, despite his doctor’s protestations. Shaun and Michelle held the view this better prepared his body for what was to come.
Ramifications
Twenty-six years later, Shaun recalls an often-arduous journey – being sacked by his employers when they learned of his condition (and taking them to arbitration for unfair dismissal), forced to then take work as a cleaner and, later, retraining as a truck driver while undergoing thrice-weekly haemodialysis in hospital. There were skin cancers – of which he has a greater risk due to transplant medication – overwhelming tiredness and, when they travelled interstate to watch their then teenage son compete in tennis competitions, the cost of dialysis on the move.
But still, Shaun is one of the luckier ones.
“Right now, I have a bit of brain fog and the drugs can be frustrating, but I don’t even think about it (since his most recent transplant in 2019),” he said. “Michelle and I have been together for 30 years, and she has looked after me for 26 of them. It’s hard on the partner. With kidney disease, you need that support. I couldn’t have done it without her.”
In Shaun’s case, alongside millions of others, by the time he was diagnosed with CKD, it was too advanced to stop its progression. Kidney Health Australia says a person can lose 90% of kidney function without experiencing any visible symptoms, so early detection is paramount.
“Kidney disease is a silent killer,” according to Dr Hemant Kulkarni, a renal physician with Wexford Medical Centre in Murdoch. “Once a patient presents with symptoms, you have a problem,” he said. “Then, you’re either on the wait list for a transplant and are on dialysis, or you withdraw from dialysis and accept that is it. It’s not a ‘sexy’ disease and in the news, this doesn’t get a lot of attention.”
The number of Australians waiting for a kidney transplant is 13 times higher than the number waiting for a lung and 19 times higher than the number of individuals waiting for a heart transplant, according to KHA.
There are also differences of opinion on dialysis, joining the ever-present problem of geographical challenges for those in remote communities.
As of December 31, 2018, there were 13,399 people with end-stage kidney disease on dialysis treatment in Australia, with centre-based haemodialysis as the predominant therapy at 75%, and home-based at 25% (30% of those are on haemodialysis and 70% on home peritoneal dialysis). Dr Kulkarni says that in WA, about 1000 people are on dialysis and only about 250 of those undergo home treatment.
Bed shortage
“There is a shortage of beds for dialysis in WA,” Dr Kulkarni said, another issue for kidney patients, which he argues needs be radically addressed.
Yet more home-based dialysis may not be an easy solution. St John of God Health Care nephrologist Dr Kevin Warr said these numbers had stalled for a reason. To treat yourself at home, you must have a minimum level of ability to self-care and be supported, and for much older patients, this isn’t always possible.
“When we were dialysing predominately 60- to 70-year-olds that wasn’t a problem (but) now we are dialysing 80- to 90-year-olds and even 90-plus, so self-care becomes a significant issue,” Dr Warr said.
He believes it’s easier to choose satellite haemodialysis in dedicated centres or hospitals and undergo dialysis by a nurse three times per week.
“It’s no surprise, then, that home dialysis numbers remain stagnant,” he said. “There are issues with who and how home dialysis is provided and surgical access issues.”
Dr Warr adds there is now a new generation of consultants who have “little or no access” to gain experience in looking after home patients, except when admitted to hospital with complications.
Still, for 62-year-old Carol Chamney, home dialysis has proved to be her saviour. Unlike Shaun, Carol prefers it, saying she enjoys the freedom of being able to do treatment in her own home, but also being able to use it when she and her husband are travelling.
Carol is one of life’s optimists. Diagnosed with type 1 diabetes 46 years ago, she has since lost a leg, a foot and – after taking eight weeks of training – has undergone home dialysis for six years for CKD brought on by diabetes.
Despite her health issues, Carol leads an active life, including aqua walking in the local swimming pool three times a week, quilting, joining other DART members for quiz nights and caravanning around Australia with her husband, Terry. Because of complications from diabetes, she is not suitable for a kidney transplant.
A mother, grandmother and former nurse, Carol finds the home treatment fits in much better with her lifestyle.
Home advantage
“It gives me a bit of freedom,” she said from her Armadale home. “In the caravan, I put the machine next to the bed and as long as you’re careful with cleanliness and do your research before you go – and we’ve been across the Nullabor and on a car ferry to Tasmania – it can work well.”
Carol says it’s challenging at first, but there are 24-hour hotlines for home dialysis patients.
“I just want to make the most of my life,” she told Medical Forum. “Home is not suitable for everyone, but I am very lucky that my husband does a lot for me. And I don’t let things get me down.”
For those in regional and rural areas, there is also the tyranny of distance when it comes to dialysis, with many having to travel to receive care. During COVID border closures, dialysis unit closures in some remote communities meant people were reportedly left with no option but to relocate thousands of kilometres away from home for treatment.
Dr Kulkarni stresses that continuity of care between patient and doctor is paramount to a successful journey from dialysis to transplant, an extra challenge for rural and/or remote patients relying on visiting physicians.
However, researchers have recently undertaken a transplant using a pig’s kidney with encouraging initial results. (The recipient was a brain-dead patient who had donated his own kidneys). While it’s early days, they’re working on eliminating risk from viruses and, as Dr Kulkarni says, there are hopes for “a future possibility of using kidneys from animals”.
Elsewhere, stem cell-based therapies could one day resolve the issue of an insufficient number of donor kidneys, reduce the likelihood of organs being rejected following transplants and reduce patient’s reliance on dialysis, according to Pharmaceutical Technology.
Last year, Perth-based group Proteomics announced it had developed a simple blood test to predict and diagnose whether a patient will develop diabetic kidney disease up to four years before clinical symptoms appear.
For Shaun, he would simply like people to know more about the importance of kidney health.
“I’d like more awareness about the fact it’s a silent killer,” he said. “You hear about cancer every three seconds, but not kidney disease.”
ED: The 24th World Transplant Games will be held in Perth next April. First held in 1978 in Portsmouth, UK, the Games have grown to become the world’s largest awareness event for the gift of life and a beacon for transplant recipients, their families and supporters, donor families and living donors.
Details at www.wtgf.org
Data update and impact of COVID
The number of Australians receiving kidney replacement therapy more than doubled between 2000 and 2020, from 11,700 to 27,700 according to the AIHW report, Chronic kidney disease: Australian facts.
More than half (53% or 14,600) of those receiving kidney replacement therapy were on dialysis and the remainder had functioning kidney transplants that required ongoing follow-up care.
AIHW spokesperson Miriam Lum On said it was estimated that 1.7 million Australians were living with early signs of kidney disease, but many Australians were unaware due to the initially asymptomatic and progressive nature of CKD.
Dialysis was the most common reason for hospitalisation in Australia in 2019–20, with about 1.5 million hospitalisations (accounting for 14% of all hospitalisations in Australia). Each dialysis treatment is recorded as a hospitalisation, with most people undergoing three dialysis treatments a week.
Among Aboriginal and Torres Strait Islander people, about 2,500 received kidney replacement therapy in 2020, a rate of 284 per 100,000, with more than one in four (26%) receiving treatment close to home.
A total of 885 kidney transplant operations were performed in Australia in 2020, with nine in 10 being for first time recipients. Of all transplanted kidneys, 704 (80%) were from deceased donors and 181 (20%) were from living donors.
Ms On said data showed the COVID-19 pandemic substantially impacted organ donation and transplantation activity in Australia. Adult kidney transplant programs were suspended from 24 March 2020 to mid-May 2020. This resulted in an 18% drop in the number of kidney transplants from deceased donors compared with 2019 (704 and 857 transplants, respectively). There was a further decrease of 6.8% in 2021 compared with 2020 (656 transplants).