Families urged to start organ donor conversation

Tumut mother Jackie Foster said she’s hopeful her son Joel will receive a kidney transplant soon, asking Snowy Valleys residents to opt into the Australian Organ Donor Register.

This Sunday will mark the end of DonateLife Week 2020, but for families who are still waiting for organ transplants, there are years left before the campaign is really over.
Tumut mother Jackie Foster is hoping that more people will opt into the organ donation registry, potentially changing the life of someone like her son, Joel.
Joel, in his early 40s, lives and works in Sydney where he has an at-home dialysis machine. Mrs Foster said her son has been on dialysis since mid-2018, before his first kidney was removed because of Polycystic Kidney Disease, a hereditary condition.
“It was picked up when he was about 35, but then in 2019 one of his kidneys had to be removed because it was causing him pain. The cysts were getting bad and they would burst and it was impacting his health,” she said.
“Kidney disease is a very silent disease. Often you don’t know that you’ve got it until the kidneys start to deteriorate.”
Mr Foster’s condition is genetic, and his remaining kidney has limited function. He’s only the list for an organ donation, but the wait could take years.
When Mr Foster’s kidney was removed at Royal Prince Alfred Hospital.
“It was a five hour operation and it was just unbelievable.”
At first, Mr Foster was traveling to the hospital three times a week for dialysis, a procedure which took six hours at a time. Now, he has a machine at home which he can use every other day, and Mrs Foster said he’s in a good place. With the home dialysis machine, Mr Foster is better able to run his commercial air conditioning business in Sydney.
“As a mum, being so far away, it’s very hard,” she said, adding that Mr Foster has to plan his days around dialysis, which limits how long he can stay in the Snowy Valleys when he comes to visit.
“He tells me that he has two jobs, that’s what he says. He has his work life, he runs a successful air conditioning company. He then comes home, has to go through this whole process of setting up the machine,” she said. “The flip side is he’s alive. That’s what we’re thankful for. Very very thankful for that.”
A kidney transplant would make a world of difference for both mother and son. Mrs Foster had previously gone through a raft of tests to donate one of her kidneys to Mr Foster, but at the eleventh hour, she mentioned to her doctor that she’d found a mole on her shoulder.
It turned out to be a malignant melanoma.
“That was quite devastating for both of us,” she said.
Mrs Foster’s cancer was detected early and she’s in good health, but can’t attempt to donate an organ again for five years. She hopes by that time Mr Foster will already have received a kidney.
“It’s frustrating for me to think that people don’t talk to their families enough about organ donation,” she said. “Death in our community can be a taboo. It’s not often talked about.”
Mrs Foster lost her husband in 1993 to a farming accident in Narrandera, where the family lived. Joel was 15 at the time.
“Since losing my husband, we’ve always been quite open about death and grief and loss and how it impacts on a family,” she said.
The Australian Organ Donor Register currently lists 1,600 Australians and their families who are waiting for the call that an organ has become available.
The organisers of DonateLife Week said that since 2009, more than 13,000 Australians have had their lives saved as a result of an organ transplant.
In 2019, 1,444 Australians received a life-saving transplant because of 548 deceased organ donors and their families who agreed to donate.
In Australia, donors must opt in to the registry, but families still retain the right to consent or deny organ donation.
To join the Australian Organ Donor Register, or for more information visit donatelife.gov.au
DonateLife week 2020 runs from July 26 through August 2.