For most of his life, 40-year-old First Nations man Tristram Creek has lived with the consequences of a disease he was diagnosed with as a child.
After a gruelling health battle, multiple obstacles and six years of dialysis, he finally received a double organ transplant earlier this year which has completely transformed his life.
Originally from Cairns and living in Mackay for the past eight years, Tristram was just 13 years old when he was diagnosed with diabetes. By his early 20s, years of poor diabetic control as a teenager had already begun taking a devastating toll on his kidneys.
“I knew my kidney function was declining, but I didn’t make the lifestyle changes I needed to,” he said.
“It eventually got worse over time until I finally required dialysis, which I deeply regret not changing my lifestyle choices back when I had the chance.”
Kidney disease and diabetes run strongly in his family and are disproportionately high within Indigenous communities, but even knowing the risks could not prepare Tristram for the arduous health battle that followed. For almost six years, dialysis became his world.
“Treatment can be a lonely thing,” he said.
“When you’re doing dialysis it’s hard to see anything outside of that. That’s all you can focus on.”
Getting onto the transplant waitlist was itself a long and traumatic journey. Before he could even be considered for transplant surgery, Tristram faced obstacle after obstacle.
He lost vision in his left eye before starting dialysis and eventually had to have the eye removed. Today he wears a prosthetic eye.
Doctors also feared he may have been suffering from amyloidosis which is a rare and potentially terminal disease caused by abnormal protein deposits in organs and tissues.
For six months, Tristram lived in limbo waiting for results from specialist testing in Brisbane.
“During that time, I was planning my funeral and building a house at the same time,” he said.
“When the amyloidosis team finally gave me the negative result, it felt like another chance.”
There were more complications to come. He underwent major dental surgery, suffered internal bleeding following a minor procedure requiring two blood transfusions, battled multiple infections and was warned a third transfusion could remove him from the organ transplant waitlist altogether.
“I refused the third transfusion and luckily the bleeding stopped on its own,” he said.
Even once he was listed, the wait for a donor was extraordinarily difficult. As Tristram required both a kidney and pancreas transplant, the donor criteria were highly specific including a deceased donor under the age of 40, disease-free, with perfectly functioning organs. Compounding the challenge further was his rare blood type.
“I can donate to anyone but I can only receive my own type back,” he said.
“Finding an organ donor felt like a one in a million chance.”
After more than two years on the transplant waitlist, physically exhausted and emotionally drained, Tristram reached breaking point earlier this year.
He had lost his father 12 months earlier, gone through a divorce, lost his federal government job on medical grounds, lost his ability to drive because of his eyesight and was facing the prospect of homelessness.
Earlier this year, he decided he had endured enough.
One Saturday while feeling very unwell, he attended dialysis on a day that was not part of his usual schedule. During the five-hour treatment, he made the heartbreaking decision to completely stop dialysis, a choice he knew would mean removal from the transplant waitlist and likely, him having only weeks left to live.
Tristram was preparing to tell the renal nurses he would not be returning again and was ending dialysis treatment when his phone rang.
“I had my phone in one hand, open to a note where I’d written thank you messages to all the nurses over the years, and the nurse call buzzer in my other hand,” he said.
“My phone rang and it was a private number, so I waited until it stopped ringing and the screen cleared so I could return to my note, ready to press the nurse buzzer to tell them I was not coming again.
“Just as I was about to press the buzzer, the phone rang again and this time, it was a Sydney number.
“It was actually the transplant coordinator from Westmead Hospital telling me that they finally had a match.”
A Mackay Base Hospital’s renal team leader then came rushing around the corner – he was speaking to the Sydney transplant team himself.
“If that isn’t divine intervention, I don’t know what is,” Tristram said.
He received the life-changing phone cal and flew to Sydney the next day (which also happened to be his late father’s birthday) and underwent a kidney and pancreas transplant at Westmead Hospital.
Usually transplant patients travel with a support person, but due to his circumstances, Tristram faced the operation alone until his older brother was able to join him a week later.
Despite the complexity of the surgery, his recovery progressed remarkably well.
Tristram spent eight days in hospital before moving into accommodation provided by Westmead Hospital across the road. While typical recovery can take up to eight weeks, his strong focus on health and fitness before and after surgery accelerated his progress and he returned home to Mackay after nearly four weeks in Sydney.
Nearly six months on, Tristram said the transplant has completely transformed his life.
“I feel amazing. I have a new lease on life,” he said.
“My whole world has opened back up again and I see life differently now.
“I cherish every day not having to be stuck to a (dialysis) machine.”
Tristram’s focus now is firmly on maintaining his health through exercise, strict medication routines, healthy eating and regular follow-up appointments through Mackay Base Hospital and Westmead Hospital. He attends twice-weekly appointments in Mackay for blood tests and monitoring, with visits expected to gradually reduce over time.
“Everybody at Mackay Base Hospital has been so supportive, especially the renal team,” he said.
“Both Mackay and Westmead communicate really well together for the best possible outcome.”
While his gratitude for the medical teams runs deep, Tristram said he also has profound gratitude for the donor and their family.
“I’ll never take this second chance for granted,” he said.
After all he has endured, Tristram hopes others living with kidney disease or undergoing dialysis never lose hope.
“If your kidney function is reducing, make sure you prioritise taking the medications prescribed to you and maintain a healthy lifestyle. I wish I had changed mine many years ago,” he said.
“And if you’re on dialysis and on the waitlist, just really try to stay positive.
“Even when you feel like you can’t fight anymore, you have to really dig deep and find the will to survive. Just don’t ever, ever give up.”