05 August 2016

DonateLife Week - End the wait. Stories from people whose lives have been changed by organ donation.

This week (31 July - 7 August) is DonateLifeWeek. I apologise for the late timing of this post - I've been in hospital since Tuesday. But my wonderful friends, whose lives have been changed by a transplant, have provided their stories, which has made writing this from my hospital bed really easy.

DonateLife Week provides a great opportunity to make time to join the Australian Organ Donor Register. Currently, just eight per cent of 18-24 year olds have registered their donation decision.

69 per cent of Australians said they were willing to become organ and tissue donors, yet only 33 per cent of adults had joined the national register.

Increasing rates of organ donation enabled a record 707 Australians to receive life saving transplants in the first six months of this year. A new annual record was also set in 2015, of 1,241 organ recipients.

Currently around 1,500 Australians are waiting for a life saving transplant, with a further 12,000 people on dialysis waiting for a new kidney.

What are you waiting for? Sign up to be an organ and tissue donor at donatelife.gov.au. Talk to your loved ones about your decision to donate your organs and tissue.

I asked my friends what it's meant since their wait for an organ transplant has ended. Here are their stories - reading them confirms the value of being an organ donor.


"Ending the wait for a transplant means that I’m still ALIVE! I’m so grateful that I’ve been given a second chance to live again, and I’m determined not to waste any single minute.

My new lungs have literally given me my life back. I’m back at work full time in a career that I love. I volunteer for the Heart and Lung Transplant Trust (Victoria) Inc so that I can make a difference in the lives of people who are on the waiting list, or have just had a heart or lung transplant.

There are so many things that I couldn’t do beforehand that I can now - I can play with my nephews, walk my dog, climb stairs, go shopping, visit galleries and exhibitions, socialise with my friends.

One of the funniest things that people have noticed post transplant, is how much I can talk. When I couldn’t breathe, I spent a lot of time listening and not joining in on the conversation, as it was more important to be able to breathe than talk…. But now you can’t shut me up

Which is a perfect segue to remind everyone to #havethechat about organ and tissue donation, and sign up online. You could save a life one day."

(Camille was my bridesmaid earlier this year. I am so grateful for everything she did to make the wedding and hens day beautiful. Her generous donor and her family has given Camille so much energy. Here she is being my skirt fluffer, in between being a wedding social media manager!)



"Ending the wait for a transplant has meant I can now do things I never thought possible. The first thing I told the doctors and nurses that I was most looking forward to was being able to walk my dogs. Now that I can, I feel happy and I know my dogs do too.

Also I never thought I'd hop on a bike again amd after 10 years of not being able to, I got on one. Then decoded to do 2 Tour de Transplant Fundraising rides (2014 and 2016) and cycling in the Australian Transplant Games (2014)... Wow!

Life has been amazing since transplant amd I'm so happy to be sharing my second chance at life with my fiance, David."

(Bec and I bonded over a giant dessert pizza!)


Belinda's husband Mark received a transplant last year. You can read her story on ABC Open.

"From Mark's perspective, ending the wait for transplant meant he could start thinking about life all the time instead of death. It's given him the chance to spend time with us, his family and start thinking about the future in blocks bigger than 24 hours. Living with an artificial heart for three years means he is still profoundly grateful for things like being able to roll over in bed (the VAD had to be plugged in to mains power at night so he was a bit trapped with the cords), be able to shower without spending 10 minutes taping up his abdomen and balancing the VAD (couldn't get the machinery wet or it stops working!).

Ending the wait means he doesn't have to make hard decisions about how to spend the limited amount of energy he had. Now he can go to footy games, volunteer at our son's footy club, and just be a 'normal' person. It's been incredible as a family to be able to travel further than two hours away (hearts need to be transplanted within four hours) and to do things where we can all get wet! Water slides, running through sprinklers, water pistols, water balloons, getting caught in the rain, watching the boys at swimming events, walking on the beach - so many little freedoms which aren't a big deal until you can't do them.

A transplant has been the impossible dream! Mark nine months post-transplant ticking off a bunch of things that would have been impossible while waiting for transplant. Travelled by plane! Travelled to the other side of the country (Qld)! Walked more than 10km's per day! Walked on beaches, went on water slides, spent whole days out with the family! Went on boat cruises! Went on crazy, silly, dangerous rides with our crazy, silly, dangerous children! All only possible due to a wonderful, generous donor family. And that is probably enough about us."

Carly Jay

"The most life changing aspect of ending the wait for me was beginning a new life from where there was so much decay. Nearly eighteen years later, I still find it hard to believe I'm still alive. I never planned to live for this long, really. My most 'frivolous'? Sex. Being able to have great, breathtaking sex, although it was never frivolous for me. The most rewarding thing is helping others in a similar situation now in my role as a spiritual carer. I love helping heathens like me."

To join the organ donation register, visit DonateLife.gov.au, and have the chat with your loved ones about your decision.




  1. Hey Carly - thanks for taking the time in a week filled with pain to share these stories, and a message of hope.

  2. This is beautiful. I will one day need a double heart and lung transplant, my parents new from a young age and I was almost put on the list when I was in my teenage years. This is so important for people to know so they can become donors and for people like me to hear success stories for their future ones. Thank you. Always amazing 💜💙

  3. Carly, thank you, I have just registered, something that I have been meaning to do for a long time x


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