Natalie Nicholls was in her early 20s when a doctor delivered a double blow – she would need a kidney transplant later in life and falling pregnant would become riskier the longer she waited to have children.
The Queensland woman had only been with her now-husband James for a year at the time and recalls an "awkward" conversation about starting a family sooner rather than later.
But he stayed by her side after she was diagnosed with focal segmental glomerulosclerosis – a disease in which scar tissue develops on parts of the kidneys that filter waste out of blood – and together, they decided to stop using contraception.
At that stage, Mrs Nicholls' kidney function was about 56 based on a complicated equation used by doctors, which assesses how well the kidneys are working, on a scale ranging from single digits to greater than 90.
Persistent scores of less than 60 suggest chronic kidney disease and below 15 represents kidney failure.
Nine months after her diagnosis, Mrs Nicholls fell pregnant with their daughter Layla, who will turn five in May and since then, they have also welcomed a son, Oliver, who turned three in December. Both were born healthy at 37 weeks gestation.
But Mrs Nicholls' kidney function dropped to 37 after Layla's birth and to 27 after Oliver was born.
Potential dangers to both mother and baby ended thoughts of trying for a third baby.
"We didn't really want to take the risk of either having a baby and me needing a transplant ASAP or worst case, the baby not surviving the pregnancy," Mrs Nicholls said.
"We had our pigeon pair, and they were healthy, so we just decided: 'That's us now'."
As she juggled her relationship, starting a family and early motherhood, Mrs Nicholls attended a kidney clinic at the Royal Brisbane and Women's Hospital (RBWH), where most of the other patients were decades her senior.
But for the past six months, the 29-year-old has been attending a pilot clinic designed for adolescents and young adults with kidney problems in the Metro North Hospital and Health Service district, aimed at easing the huge transition between child and adult services.
She's been able to talk to other young women about her experiences of having children with kidney disease and discuss issues surrounding kidney transplantation with patients who have already had one.
A youth worker attends the monthly outpatients' clinic and has organised activities, such as painting, for the young patients to do while they wait.
"It was so good. I love it," Mrs Nicholls said.
"You're not sitting there staring at your phone waiting to see the doctor."
Clinic leading to better outcomes
Discussions are under way into having a dietitian attend a clinic to discuss ways of reducing salt and sodium in their diets to reduce the strain on their kidneys.
Renal specialist Brian Doucet, who works at the clinic and treats Mrs Nicholls, said evidence showed improved health outcomes for adolescent and young adult kidney transplant patients with a dedicated clinic.
"The reason why those patients do better, we believe, is because that's the highest risk point for them to become non-compliant and disengaged with the maintenance of their transplant," Dr Doucet said.
"In the first three years of transition from paediatric to adult services, we see very high rates of loss of their transplanted kidney. It's been shown if your service has a transplant-focused young adult clinic, then the rates of graft loss due to non-adherence to medications reduce significantly.
"For example, there's a clinic in Adelaide that's been running for over 10 years, focusing on adolescents and young adult transplant recipients. They've not had a patient lose a kidney due to non-compliance, which is a fantastic result."
The Brisbane clinic, funded by the Sony Foundation and Transplant Australia, includes kidney dialysis patients as well as transplant recipients.
Dr Doucet said the clinic aimed to provide additional support for patients as they juggled life beyond paediatric services.
"Adults are much more expected to be in charge and maintain their own care, whereas in children's models, often times they have case managers and their parents are involved as well," he said.
"We did get the echo from the young adult patients that additional support, additional contact, additional opportunities to ask questions beyond the baseline medical care that they're already receiving is what they needed."
'An example of the health system adapting'
Bryce Drew, who also attends the clinic, received a donated kidney from his dad, Shane, in July 2020, after his kidney function dropped to 13.
Mr Drew, 27, struggled to find the words to adequately describe the enormity of his father's gift, which has "immensely" improved his quality of life, allowing him to avoid kidney dialysis.
"I didn't ask him to do it and he didn't really ask me if I wanted him to do it. It was just something that he felt like he had to do," he said.
"It was a massive sacrifice. I'm not his only child. He's got two younger children. At the time, my younger sister was 16 and my younger brother was 12.
"He's still got to provide for them. He had a lot on the line. He had to have three months off work post-surgery with his recovery."
Mr Drew, whose own kidneys were scarred because of urinary reflux as a toddler, works as a construction site manager and was married for less than a year before the kidney transplant.
The transplant has allowed him to keep working and enjoy married life like other young men.
Before the adolescent and young adult kidney clinic, he attended outpatient appointments with mostly elderly patients.
"I remember the first time I went to a kidney clinic, I think I was the only person there that was under 60 years old," Mr Drew said.
"It was a shock in that regard, thinking: Why is this happening to me? The youth clinic definitely breaks down that shock factor, that it can happen to anybody.
"It's a little community, really. We're all going through the same thing and we're all looking out for one another and helping each other where we can.
"It's a good example of the health system adapting to different people's needs."
'I feel good'
For Mrs Nicholls, being able to talk to Mr Drew at the clinic has helped prepare her for the day she will need a kidney transplant.
Late last year, her kidney function plummeted to 15, prompting younger brother Troy Rogers to begin the testing process that will determine whether he is a suitable match to give her one of his kidneys.
But she's since had weight loss surgery, dropping 19kg to 86kg – a procedure that has also taken pressure off her kidneys.
Her latest test indicated her kidney function had improved to 24, giving her more time before she will need dialysis or a transplant.
"My kidneys are going good and I feel good," she said.
Seven years after being told a kidney transplant is inevitable, she feels grateful she's been able to have a family before she needs one.
"I feel very lucky I found out the way I did because I hear a lot of people, they go to the hospital sick and they get told they're in kidney failure and they need a transplant right now [or dialysis]," she said.
"At least I got my kids, we had fairly normal pregnancies. I could be their mum without being in and out of hospital."
