Organ donation hit hard by COVID-19 global pandemic
Organ donation in Australia has been impacted by the COVID-19 pandemic due to travel restrictions and surgery halts, but those who have been lucky enough to receive the gift of life are asking people to still register as organ donors to help save lives.
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The COVID-19 pandemic is causing multiple organ donation failures as programs have been suspended and waiting lists have blown out.
And so those who have been lucky enough to receive the gift of life through donation are calling on people to not only register as an organ donor but let their families know of their wishes.
The Australian and New Zealand Paired Kidney Exchange was suspended from March 6 and can only begin if and when travel restrictions lift.
Deceased kidney and live kidney donor programs across Australia were also suspended from March 24 and only recommenced in May, blowing out waitlists.
Liver, heart, lung, paediatric and multi-organ transplant programs have continued but are subject to case-by-case review by the National Transplantation and Donation Rapid Response Taskforce, which meets weekly to discuss the response to COVID-19, the Organ and Tissue Authority said.
According to the latest figures for 2019, the families of 548 loved ones transformed the lives of 1444 Australians by agreeing to organ donation.
In 2019, 1309 had the potential to be organ donors but just over half of those families agreed.
At the end of last year there were still about 1700 Australians waiting for an organ transplant and a further 12,000 on dialysis who may benefit from a kidney transplant.
While the majority of Australians support organ and tissue donation, in December 2019 only one in three had registered to be a donor on the Australian Organ Donor Register (AODR) the report said.
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The ability of organ donation to transform lives is defined by Miranda Hill from Engadine. Without it, neither she not son Harry would be here. She said she has “had a lot of donations” — and that is an understatement.
Death at a young age was a tragic reoccurrence in Ms Hill’s family. She lost her dad to heart failure when she was just 16 months old.
Tony Crowther was only 31 and doctors blamed a virus.
Tony’s own mother Naida also died at age 29, just three weeks after giving birth to her third child. Tony was only three at the time but what just seemed like bad luck was revealed to be something much more when Ms Hill was diagnosed with a condition called dilated cardiomyopathy at the age of 21. It too would lead to the same outcome of heart failure.
“My grandma died from heart failure, my dad died from heart failure but I was born in the right era,” she said.
In 2008, genetic testing revealed the family curse was in fact inherited. Although she had modern-day drugs to keep her stable, she too went into heart failure at age 31.
Her dreams to be a mother were also smashed. Pregnancy would likely kill her.
“I wanted my own family with my husband but I was told it wasn’t possible, but I had an amazing best friend who offered to carry a baby for me,” she said.
In 2013, Megan Hill, her friend and now sister-in-law, had her own two children and was willing to carry her baby. To avoid passing on the condition, Ms Hill searched for an altruistic egg donor and a kind woman named Jemma Bacon from Queensland offered an egg to be fertilised and carried by Megan.
“When Megan became pregnant I was stable but then I slipped into heart failure at the end of the pregnancy and by December 2014, I was told I needed a heart transplant,” she said.
Harry was born on February 5, 2015 but, as she waited for a transplant, she lived in fear.
“Privately I was scared, I needed to stay positive but I was 16 months old when I lost my dad and I was terrified my child would lose me,” she said.
She later received the call a compatible heart was available.
“It is bittersweet receiving that phone call — your hopes soar because you are going to be saved but you know another family is losing someone they are not ready to lose,” she said.
“I know it was a young, fit heart.”
But the gift of a new life is not something she will ever take for granted.
“I’ve had a lot of donations, an egg, a uterus, well Megan donated her whole body for nine months, and a heart,” she said.
Each year Ms Hill has done something spectacular to celebrate the anniversary of her heart donation and honour the person whose heart gave her a second chance.
She has jumped out of a plane, got a tattoo, planned hot air ballooning but, this year, with COVID-19, she has decided to raise money and is calling on donors to give $5 to Victor Chang Cardiac Research Institute.
“I wouldn’t be here without heart research,” she said.
Ailish Ryan, from the Northern Beaches, would also love to be a mum one day but, as she suffered from cystic fibrosis, she never dared let herself dream.
“My doctors had prepared me that I would one day need a lung transplant in my future, it’s pretty daunting, but I didn’t plan for the future,” the 24-year-old said.
“I found it hard to look ahead because I didn’t know what would happen, even a transplant is not a guarantee, some people are on the list for a long time and a donor never comes up.”
Ms Ryan was diagnosed with cystic fibrosis at just three months old. The inherited disorder causes cumulative severe damage to the lungs. She has been in and out of hospital her whole life, taking medication regularly and undergoing four hourly breathing treatments daily but, last year, her lungs went into failure.
“I was losing a lot of weight; I was in and out of hospital and at the ER regularly. I had no energy and was barely able to hold down a part-time job,” she said.
She required a double lung transplant, which she received after just six weeks on the waitlist.
“Immediately after I was in a lot of pain medication and because you have a scar it is not an immediate deep breath that people would expect,” she said.
“It takes a lot of rehab and work and slowly getting used to the lungs but it was quite incredible to be able to take a deep breath.
“It gave me such an endorphin rush to have that much oxygen going through to my brain and to be able to laugh without coughing was incredible, have a conversation without running out of breath — everyday things were amazing to me.
“It makes me so happy to do the small things.”
Now she dares to dream she may become a mum.
“It is something I had never thought about before, I have a long-term partner, so it is something I can think about now,” she said.
“I am just enjoying being healthy and having that as an option in the future is something I have never had before. It is exciting — I never thought about the future at all and being able to plan for it is exciting but also daunting.
“I’ve lived my whole life not really thinking about it but I am so grateful now that I can.
“I wasn’t looking into the future — that was kind of scary. Now I am.”
To register for organ donation go to donatelife.gov.au. To donate: victorchang.edu.au/5for5