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Why do people need an organ or tissue transplant? For Penny Hamilton, it was a matter of the heart

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Shepparton resident Penny Hamilton, 67, shares her experience on the transplant waiting list. Photo by Megan Fisher

Penny Hamilton is one of those rare people you meet who lights up a room like gold shimmering at the bottom of a stream, making it hard to imagine her crying uncontrollably for an entire two-hour drive back to Shepparton.

“I was told by the cardiologist that if I didn’t have a heart transplant, I probably had about 18 months to live,” she said.

Five years prior, Penny had been diagnosed with dilated cardiomyopathy, a condition in which the heart becomes enlarged and cannot pump blood effectively.

Her heart gradually began to weaken and eventually failed completely.

It was 2021, and Penny had gone into cardiogenic shock.

“I was transferred to Melbourne and stayed in The Alfred hospital for about a month while they got me to a point where I was still seriously ill — my heart muscle was very damaged, as were some of the valves — but what they call ‘clinically stable’,” she said.

It was during this time the cardiologist revealed that Penny had a decision to make: a heart transplant or inevitable death within two years.

The shock had initially clutched her, but the choice was obvious.

“I cried all the way home in the car ... but that gave me the momentum to go on the waiting list,” she said.

The second shock came when she learned of the process to get on the transplant waiting list and stay there.

“They make you jump through so many hoops,” Penny said.

“I had six months where they put me through all the hoops.”

Six months out of a possible 18 left in her life — the clock was ticking down, and so was her ticker.

For doctors to consider a person ‘transplant-ready’, they must be physically and mentally fit for surgery.

If you’re overweight, you need to lose that weight.

If you smoke, you must quit.

If you drink, you stop.

And then the poking and prodding begins.

Penny remained steadfast, even as doctors bombarded her with medical checks — blood tests for every virus imaginable, dental assessments, bone density evaluations and psychological examinations.

“You have to build yourself up as much as you possibly can,” Penny said.

“When I first left hospital, all my muscles had atrophied.

“I was as weak as a kitten and on one of those Zimmer frames.

“I had to learn to walk for the second time in my life.”

But once a person makes it through the hoops, a second chance at life awaits.

After being placed on the waiting list, Penny endured six months of high anxiety, anticipating the call that would confirm a match.

“I could not feel at peace for the whole six months,” she said.

“I thought, I’m either going to get a transplant or I’m going to die.

“But I was relatively lucky ... a lot of people don’t make it.”

For those in need of a transplant, this rite of passage can feel like a particularly tough pill to swallow (and not just because of the many medications they swallow on a daily basis).

Right now, more than 1800 Australians are waiting for a life-saving transplant, and an additional 14,000 are on dialysis, many of whom would benefit from a kidney transplant.

Hundreds needlessly die each year while languishing on the waiting list, a reality particularly vexing because these deaths are preventable.

Zaidee’s Rainbow Foundation founder Allan Turner said there was an acute shortage of donors and donor registrations.

“More people are waiting for a transplant than are donating,” he said.

“Nobody wakes up in the morning thinking they’re going to have a transplant or need a transplant.

“But accidents just happen, diseases just happen.”

Heart and kidney diseases are some of the most common reasons for organ transplants.

Allan noted that individuals awaiting a kidney transplant often faced a waiting period of seven to 10 years, largely due to high demand and the fact that many could live with a poorly functioning kidney.

Lung transplants may be necessary for those suffering from cystic fibrosis or emphysema, while diabetes patients might require a pancreas transplant.

Cornea damage, often resulting from accidents such as scratches or pokes to the eye, can also necessitate transplants.

“When people think about organ and tissue donation, it’s not just your organs or your corneas, it could be your skin and bones as well,” Allan said.

“Predominantly, all burn victims need skin transplants if they can get them.”

Additionally, sports-related injuries can lead to a heightened need for transplants.

“No one issue says you need a transplant today or tomorrow, little things in life can flick the switch,” Allan said.

“It could be anything: the common cold, COVID-19, a major accident, family history, or even sport, like Tom Lonergan getting injured playing football.

“To list all the reasons, you could fill the whole page.”

A transplant offers extraordinary gifts to many people.

Before her surgery, Penny’s time left on Earth had dwindled to six months.

Three years have passed since her change of heart, and she still feels as blessed as the day she received it.

“I am proud of myself for battling through, working incredibly hard to be transplant-ready and to get a transplant,” she said.

“We (our support group) make the most of life because we’ve worked so hard to get it ... we call ourselves transplant warriors.

“Most of all, I’m overwhelmed with gratitude and will forever be grateful to my donor.

“I know nothing about them, but I do know they had a good heart.”

That “good heart” is Penny’s heart of gold, and she shares it with her husband, friends and everyone she meets.

Signing up for the organ and tissue donation registry takes one minute online at donatelife.gov.au or with three taps in the Express Plus Medicare app.

To learn more about Zaidee’s Rainbow Foundation and organ and tissue donation in Australia, visit zaidee.org