Hundreds of Australians are waiting for lifesaving kidney transplants. Now, they can rely on the kindness of donors across the Tasman Sea in what organizers claim is a world-first initiative.
After a two-year, Covid driven hiatus, the lifesaving Australian and New Zealand Paired Kidney Exchange Program is now back in operation.
More than three-quarters of patients on Australia’s organ waiting list need a new kidney: 1344 out of about 1750, according to OrganMatch. Another 13,000 people are currently on dialysis and may require a transplant.
The exchange program started in Australia in 2010 and has since expanded to include New Zealand Kidney Exchange (NZKE) in 2019. This will increase the potential donor pool.
ANZKX clinical director Associate Professor Peter Hughes said there was huge need for the “powerful” service because finding matches, especially for people waiting on the deceased organ donor list, could take months: time some people don’t have.
“We have seen lots of (participants in the program) who otherwise would not get a transplant get one and do really well” Dr Hughes said.
The program kicks in when a kidney transplant patient finds a willing donor, but testing reveals they aren’t a complete match. The donor’s kidney is then exchanged with another’s for a better patient match, to ensure the best long-term outcome.
Some exchanges include multiple donor-recipient pairs.
Dr Hughes, the head of the Royal Melbourne Hospital’s transplant service, said up to 30 per cent of kidney donations in Australia and New Zealand were from living donors. The program was responsible for approximately one in five kidney transplants.
Prior to the countries’ borders closing, the program completed 39 transplants. These included four chains of recipients and donors that saw eight kidneys flown from one country to the other.
Given a kidney could only be “on ice for 12 hours”, urgency and efficiency were key, Dr Hughes said.
Fellow kidney specialist Professor Kate Wyburn, president-elect of the Transplantation Society of Australia and New Zealand, said the average wait time to receive a kidney from a deceased donor was three to four years, blowing out to “more than 15 years” for some patients because the wait is dated from starting dialysis.
“Patients need to pass a workup (extensive medical testing) to be activated on the waiting list,” she said.
“Only a small percentage of people who are on dialysis are eligible for transplant, based on their medical suitability.”
Prof Wyburn said a computer algorithm allocated organs to patients – who ranged in age from babies up to people in their 80s – based on a range of factors including urgency and difficulty finding a match.
She said while ANZKX was having a clear impact, it was still “incredibly important” the 13 million Australians aged 16-plus who were eligible to register as organ donors, but hadn’t, took the 60 seconds required to sign up on the DonateLife website.
Mum’s loving gift lifesaving for Alexis
Alexis Cherry was born fighting for life.
The now-11-year-old is enjoying his new life after a kidney transplant at the age of three.
“She was born in complete renal failure, and her lungs were extremely underdeveloped because the kidneys were taking up all the space in her abdomen and chest,” mum Christine Cherry said.
“(Medical staff) said she wasn’t going to survive.
“It was very confronting. She was constantly on different machines. Her tummy was massive, full of these kidneys that weren’t functioning, but her lungs were the main concern.”
Alexis has a rare genetic disorder – autosomal recessive polycystic kidney disease – that causes fluid-filled cysts to develop in kidneys in utero.
Mrs Cherry stated that doctors were uncertain if her daughter would survive lifesaving surgery to remove her kidneys and place her on dialysis.
She wasn’t producing urine, blood pressure issues meant she couldn’t feed and a ventilator she was on was causing a type of emphysema.
Alexis was finally able go home six months later. However, because she was without kidneys, she had been on peritoneal dialysis every evening to remove any toxins from her blood.
Her first birthday was a major milestone and not long after her third, she received a new kidney – thanks to her mum.
Alexis was listed on the deceased donor’s list, but her health declined, so Mrs Cherry offered her her kidney.
It wasn’t a complete match, but the Melbourne mum’s loving donation allowed them to participate in the Australian Paired Kidney Exchange Program, which has since expanded to include New Zealand.
Alexis received a better-suited donor’s kidney, and another recipient got Mrs Cherry’s organ.
Mrs Cherry now recalls the joy of seeing Alexis’s urine bag half full two hours after she received her kidney.
“I never thought you’d be excited about wee. But we’d never seen her produce it,” she said.
Alexis is currently in grade 4 and will likely require another kidney in approximately 10 years. Mrs Cherry hopes that Alexis will be matched more through the recently established Australian New Zealand Kidney Exchange Program.
Doctor is more than a good neighbor
Dr Michael Wines, a doctor who offered to donate his kidney for the benefit of the person he shared fences with, made it possible for neighbourly gestures such as borrowing sugar or mowing the lawn to turn into life-saving ones.
Sydney mother of two Sharon Moss has polycystic kidney disease in which fluid-filled cysts grow in the kidneys, causing them to decline and grow to the size of “footballs”.
Mrs. Moss was shocked to learn that she needed a kidney donor in 2015. Her story was shared on Facebook, which generated a lot of interest but no takers.
“I had a young family. I was a very active 45-year-old and the thought of being on dialysis for the rest of my life was terrifying,” Mrs Moss said.
“I was going three days a week. It restricted my life, it’s not easy to travel, I was tired and sick.”
Dr Wines, an urologist, and Nina his wife wanted to help. So they embarked upon a rigorous testing regimen to determine if they were a good candidate.
“Sharon was crying to my wife that she didn’t think she would be able to attend her daughters’ weddings,” Dr Wines said.
Dr Wines was accepted as a donor, but was not a match to Mrs Moss. They joined the Australian New Zealand Paired Kidney Exchange Program.
The Royal Sydney Hospital-based doctor performs approximately 50 kidney transplants annually and says that waiting for a direct match on a deceased list could take several years. The exchange program helped to reduce this.
It took several weeks for them to be matched in an orderly chain of recipients and donors. Mrs Moss finally received her precious kidney from a donor in another state after some Covid-related delays. Dr Wines’ kidney also jetted interstate.
“(The program) is just absolutely wonderful,” Mrs Moss said. “People out there want to donate, but they don’t match (with their loved one). That generous donation would change someone’s life.”
She stated that organ donors who have passed away are still important and encouraged Australians to register with DonateLife.