'What if your child needed a heart?': organ donor recipient's emotional plea to Canberrans

Heart transplant recipient Josh Lindenthaler has asked Canberrans to consider “What if your child needed a heart or any organ? Would you want someone to donate to them?”

This DonateLife Week (Sunday 23 to Sunday 30 July), he is urging community members to take a minute out of their day to register as an organ and tissue donor.

The week’s catch cry, ‘Donate a Minute, Donate a Lifetime’, reflects the fact it takes about 60 seconds for anyone aged over 16 to register on the DonateLife website.

An active mountain biker, Josh became one of 224 Australians living and thriving with a transplanted organ after receiving a new heart at age 38 in 2021.

He received the transplant after living for years with a heart disease that made it harder for his heart to pump blood around his body (dilated cardiomyopathy).

“My quality of life was slowly deteriorating, the heart was getting weaker, but the biggest thing was those severe arrhythmias [irregular heartbeat],” Josh remembers.

An internal defibrillator fitted to manage his condition was activated around 10 times over five years, and then in 2021 an ‘electrical storm’ (multiple episodes of arrhythmia within a short period of time) sent Josh to the ICU. “I had CPR by a family member and that’s the first miracle, that I survived,” he explains. Around a week later, Josh was “very blessed” to receive his new heart.

“I’m extremely grateful. I’ve got no words to express how thankful I am. I go out and live my life as best I can, that’s how I show my appreciation,” he says.

“Three months after the transplant, I got back on my bike riding as soon as I was allowed to … training just to ride and get back to what I love.”

The following year Josh won the AusCycling Marathon National Championships (albeit as the only competitor in his heat) and participated in the 2023 World Transplant Games, an international sporting competition for organ transplant recipients.

“I’m back to where I was probably in 2010, being able to do pretty much everything. The body needs to catch up to the heart now,” he says.

Last year, there were 29 successful organ transplants and almost 5000 new donor registrations in the ACT, pushing the donor registration rate to 27 per cent in the territory.

However, Minister for Health Rachel Stephen-Smith, a registered organ donor herself, says the donor registration rate in the ACT is too low in the context of a national rate of 36 per cent.

“I think that’s probably because people make an assumption that their family would know what their wishes are, and in that really difficult circumstance would choose to donate their organs,” she says.

In 2022, only four in 10 Australian families gave consent when their family member was not registered and the family was not aware of their preference, compared with eight in 10 families when the person was registered.

“But what we’re seeing at the moment is that families, even when someone is on the register, are becoming less likely to make that decision,” Minister Stephen-Smith says.

“So, it’s very, very important that you take one minute to register and also have a conversation with your family about why you’ve taken that decision and how important that is to you.”

There are around 1800 Australians waiting for a transplanted organ, which can only be provided by a very small number of people who die in hospitals (around 2 per cent).

Several Canberra monuments lit in magenta tones, information stalls and bus fleet advertising this week will seek to remind Canberrans of DonateLife’s plight and the difference they can make by registering as an organ and tissue donor.