About #DonorKindness
In Australia people waiting for an organ donation wait between 6 month to 4 years! And for many, waiting is tough because they are sick. So why can't they get organ donation quicker? Well, most of us (69%) know how important registering for organ donation is - but only 30% register. So - we think it matters, but we don't get around to it.
This Campaign is about helping people to understand we need to get around to it. We need to register. Four beautiful people - Max, Louie, Sam and Andrew share stories about how their lives were transformed by organ donation. And. They also ask you to Register for Organ Donation to help transform and save others lives.
This Campaign is about helping people to understand we need to get around to it. We need to register. Four beautiful people - Max, Louie, Sam and Andrew share stories about how their lives were transformed by organ donation. And. They also ask you to Register for Organ Donation to help transform and save others lives.
How to participate
We invite you to:
- Read the stories below
- Sign up to be an organ donor - click the link here (it takes less than a minute)
- Share the reasons why you signed up in a post to the Kindness Pandemic Facebook group (and your social media) because sharing your act of kindness will encourage others to do the same.
Scarlett's Story
When Scarlett was born in 2008 she seemed like a normal, happy healthy little girl. She underwent all the usual newborn checks with flying colours. When she was 4 months old, she became unwell we took her to the doctors who assured us it was nothing to worry about and she would recover. Luckily, I had an appointment with the Maternal Health Nurse who examined Scarlett and sent us straight back to the GP, what followed was a chest X Ray, and an ambulance being called. It was all a blur, and I was sure she just had a nasty cold. We went straight into resus at Geelong Emergency Dept and people all started moving very fast, the doctor asked us if we knew Scarlett had an abnormally large heart. From then my memory is vague I think I was in shock. We recalled a family history of Dilated Cardio Myopathy but had very little information and understanding of what that meant.
Within a few hours Scarlett & I were in a helicopter being flown to The Royal Children’s Hospital, where she was admitted to the ICU where she remained for 2 weeks. In this time, we learnt much more about her condition which is the heart muscle has stretched and become floppy, and as a result would one day soon stop beating. Scarlett was placed on the Heart Transplant List, I remember people asking how far up the list she was! I now know that if you are on the list everyone is at the top… Scarlett was approved for an Australian first where she could have a different blood group heart to her body, this was suggested because she was so desperate for a new heart.
Scarlett remained in hospital on a trial drug that could only be given every 9 days. She would perk up for 2/3 days and go back to the ward and then she would deteriorate and be sent back to ICU. Scarlett had to be fluid restricted to stop her body holding onto it, and she at this point was being tube fed. We were told if she could reach 8kg she could possibly go on a mechanical heart. Each day was filled with fear, dread, and a sense of endlessness.
My birthday came and she did not get a heart, we battled with what we were wishing for, we fully understood what another family would have to experience for our little girl to survive. One week after my birthday the Doctor called us into his room and told us a heart was coming and she would have her surgery that night. This organ was a different blood group to her body. Again her bedside became a hive of activity getting her ready and doing all the necessary checks. At 5.30pm they came and took her into theatre. It was the longest night of our lives.
From that day on we saw Scarlett recover and thrive. We were told that it would be like putting a new engine in an old car. One week after her operation she was moved back onto the ward from ICU. After 2 weeks in hospital we took her to the isolation unit in Ronald Macdonald House, she needed daily check ups’ which then became twice weekly and after 3 months we were able to take her home.
Scarlett continues to need regular check-ups every three months, she is on a drug regime to stop her body rejecting her heart these drugs come with their own complications, and this could present challenges in her future. Also transplanted hearts do not last a lifetime. What I know is that Scarlett was given a second chance at life, and we do our best to help her live her life to the fullest. She needs to do that to honor her donor and their family. On the anniversary of Scarlett’s lifesaving operation, I remember a family who began a life without a loved one. I hope that knowing Scarlett and 6 other people got a second chance because another family’s selfless act to donate their loved one’s organs. Thank you for reading Scarlett’s story, I encourage everyone to have the conversation.
Within a few hours Scarlett & I were in a helicopter being flown to The Royal Children’s Hospital, where she was admitted to the ICU where she remained for 2 weeks. In this time, we learnt much more about her condition which is the heart muscle has stretched and become floppy, and as a result would one day soon stop beating. Scarlett was placed on the Heart Transplant List, I remember people asking how far up the list she was! I now know that if you are on the list everyone is at the top… Scarlett was approved for an Australian first where she could have a different blood group heart to her body, this was suggested because she was so desperate for a new heart.
Scarlett remained in hospital on a trial drug that could only be given every 9 days. She would perk up for 2/3 days and go back to the ward and then she would deteriorate and be sent back to ICU. Scarlett had to be fluid restricted to stop her body holding onto it, and she at this point was being tube fed. We were told if she could reach 8kg she could possibly go on a mechanical heart. Each day was filled with fear, dread, and a sense of endlessness.
My birthday came and she did not get a heart, we battled with what we were wishing for, we fully understood what another family would have to experience for our little girl to survive. One week after my birthday the Doctor called us into his room and told us a heart was coming and she would have her surgery that night. This organ was a different blood group to her body. Again her bedside became a hive of activity getting her ready and doing all the necessary checks. At 5.30pm they came and took her into theatre. It was the longest night of our lives.
From that day on we saw Scarlett recover and thrive. We were told that it would be like putting a new engine in an old car. One week after her operation she was moved back onto the ward from ICU. After 2 weeks in hospital we took her to the isolation unit in Ronald Macdonald House, she needed daily check ups’ which then became twice weekly and after 3 months we were able to take her home.
Scarlett continues to need regular check-ups every three months, she is on a drug regime to stop her body rejecting her heart these drugs come with their own complications, and this could present challenges in her future. Also transplanted hearts do not last a lifetime. What I know is that Scarlett was given a second chance at life, and we do our best to help her live her life to the fullest. She needs to do that to honor her donor and their family. On the anniversary of Scarlett’s lifesaving operation, I remember a family who began a life without a loved one. I hope that knowing Scarlett and 6 other people got a second chance because another family’s selfless act to donate their loved one’s organs. Thank you for reading Scarlett’s story, I encourage everyone to have the conversation.
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Andrew Chapman's story
I have two birthdays. The first is the day I was born, on a cold day in late June, way back in the early 1950's. The second birthday came much later. I was due to die around the 12th of February 2011. Liver failure was the cause, via an acute overload of iron from a genetic condition called hemochromatosis. But due to an anonymous family's decision to allow organ donation, I received what I call 'The Gift of Life' in the form of a liver transplant, thus marking the 10th of February 2011 as the start of my second birthday. When you are near dead, recovery is never a fast process. But I knew from the moment I came back that I wanted to stay alive and keep on keeping on. Nearly ten years on, I regard every day as a free day, because my story should have ended back in 2011. The liver transplant helped me find strong again.
In 2020, my friend Adam Duke and I set up a private website called Giving Life, to share stories and information about the Organ Donation Process. More information click the link here: http://givinglife.net/ and please watch Chris Franklin's award winning documentary (14mins) about my experiences.
In 2020, my friend Adam Duke and I set up a private website called Giving Life, to share stories and information about the Organ Donation Process. More information click the link here: http://givinglife.net/ and please watch Chris Franklin's award winning documentary (14mins) about my experiences.
Max Primmer's story
I didn't know I was sick till I woke up one morning and felt nauseous and then couldn't stand up. I had to call an ambulance. They took me to hospital and they discovered that I had complete kidney failure. I was only 58 and I was so crook. When I was told I had to start dialysis I didn't really know what it was; but I was grateful for it because if I didn't have it I would die. A lot of people have a hard time in dialysis, its very tiring. They take your blood out and wash it and put it back. You get a regimen of what you can eat and drink. I could only drink 500 mls of fluid a day. I didn't complain about it because it made me feel better. I had more energy and my mind was clearer because my blood was clean again.
As soon as I started dialysis I was put on the register for a kidney donation. I wanted a transplant because it increased my chance of surviving. I wanted to keep living. I love my life. I waited three years till I got the phone call for a transplant. It changed my life. I feel so grateful for life - I've been given a second chance.
My kidney donor was a nurse who was on her way home from work when she was killed in a car accident. I could never thank her enough for what she did for me. I met her husband and children and they told me what kind of a person she was. She was strong willed and I feel I've got that extra strength from her. Every year I march in the Chill Out Parade as Di Alysis, a drag persona I created to pay tribute to the wonderful woman who gave me life. That is a a gift that I could never repay. She gave me life.
As soon as I started dialysis I was put on the register for a kidney donation. I wanted a transplant because it increased my chance of surviving. I wanted to keep living. I love my life. I waited three years till I got the phone call for a transplant. It changed my life. I feel so grateful for life - I've been given a second chance.
My kidney donor was a nurse who was on her way home from work when she was killed in a car accident. I could never thank her enough for what she did for me. I met her husband and children and they told me what kind of a person she was. She was strong willed and I feel I've got that extra strength from her. Every year I march in the Chill Out Parade as Di Alysis, a drag persona I created to pay tribute to the wonderful woman who gave me life. That is a a gift that I could never repay. She gave me life.
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Festival of Strong
On 17th October 2020, Max, Sam, Louie and Andrew shared their stories in a live event hosted for the Festival of Strong by the Kindness Pandemic Facebook Group - watch the video below.
How to Register
Registering as a donor in Australia is so easy. Check the form below! Simple!!! Click on the image below (or here) to go to the page and please let us know after you have registered so we can celebrate with you.
More information
- Donate Life website: https://donatelife.gov.au/
- Giving Life website: http://givinglife.net/
- Zaideee's Rainbow Foundation: https://www.zaidee.org/
- Andrew Chapman photography: https://www.andrewchapmanphotography.com/
Contact us
If you would like more information about this campaign please contact Dr Catherine Barrett: 0429582237
