‘I was terrified’: What it’s like to wait for a new organ

This is life on the organ transplant waiting list.

Currently the reality for about 1750 Australians, thousands more have experienced it before them – and thousands more will.

Professor Kate Wyburn, president-elect of the Transplantation Society of Australia and New Zealand, describes the waiting list as “a dynamic, complex structure that people come on and come off for all sorts of reasons”.

“It’s certainly not a chronological list where you start at the top and work your way down,” she says.

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A computer algorithm matches organs with patients, taking into account factors like the urgency of the patient getting the transplant, how difficult the patient is to find a match for, and how good a match the organ is for the patient.

Younger recipients are also prioritised, Prof Wyburn says, as it’s particularly important for them to have better long-term outcomes.

“The wait times can differ enormously,” she says.

“Liver, heart and lung transplants are driven a bit more by medical urgency. If you’re waiting for a kidney transplant, there’s an option to stay on dialysis until the optimal match can be found.”

Associate Professor James Olver, a consultant psychiatrist within the Austin Hospital’s liver and intestinal transplant unit in Melbourne, says those on the waitlist can face multiple mental health challenges.

These include “dealing with uncertainty and helplessness” surrounding their fate, and feeling isolated as worsening physical health prevents them from working and socialising.

“(There is also) fear deteriorating health may lead to them being excluded from being a transplant candidate, which is devastating, or that they could die waiting for a transplant,” he says.

Further issues present themselves post-transplant, among them survivor’s guilt.

“Patients often feel deep empathy for the family of the donor,” A/Prof Olver says. “Often our patients have also developed friendships with other people on the waiting list and when they get their transplant, are painfully aware a bunch of their friends are still waiting.”

Other post-transplant challenges can include patients thinking about how they will rebuild their lives, dealing with complications from the surgery and effects of new medications, and coming to terms with the fact “there’s a foreign organ inside their body”.

Here, three Australians who have been, or are still on the waiting list share their experiences.

Louissa Chalk

Louissa Chalk sees herself as “an unlucky lucky one”.

The Brisbane mum, 48, says she was lucky to have received a lifesaving new heart five years ago. But she’s unlucky that the nine-hour transplant surgery caused her other organs to fail – her kidneys permanently, landing her back on the waitlist, where she remains three-and-a-half years later.

Ms Chalk was unlucky to have been born with hypertrophic cardiomyopathy, which has caused her to suffer two sudden cardiac deaths at ages 12 and 23. She was clinically dead for eight minutes during the second one.

But she considers being told, after the first attack, that she may die in her early 20s “a blessing”.

“I really appreciated every single day,” she says. “And I did die when I was 23 … but I was super lucky I was at the gym with my sister who knew all about my condition, my friend who’s a cardiac nurse and a gym instructor who knew how to do CPR.”

Ms Chalk ended up in a coma and suffered short-term memory loss – but she recovered and married, continued indulging a passion for travel and had son Caleb, now 17.

But by age 43, her condition deteriorated again to the point where she needed a new heart.

Her five-and-a-half month wait was filled with “living in the moment”, quality family time, and tough conversations. “My son asked me if I was going to die,” she recalls. “I had to be honest and say, ‘I don’t know if I’ll receive a heart in time, but hopefully I do.”

She did, but that was hardly the end of it.

“Now I’ve been waiting three-and-a-half years for a kidney,” she says. “I’m on dialysis three times a week. I haven’t been able to work. My son does a lot of helping in our home.

“The longer it takes, the harder it is to keep waiting.

“And you’re constantly waiting. You carry your phone around with you all the time. Every time (it rings), you think ‘this could be it’.”

When the call came the first time, Ms Chalk recalls being “overwhelmed with conflicted emotions”.

“Somebody’s died, so you think ‘that poor family’,” she says. “And that was the only time I started to feel scared. It’s no small thing, going into a surgery knowing they’re going to cut your chest open and remove your heart.”

Ms Chalk and Caleb are working with DonateLife and the Organ and Tissue Authority on a book called Shared Heartbeat, aimed at helping families discuss organ donation.

“The way to approach it is remembering we have an opportunity to give this priceless gift to somebody who desperately needs it when we no longer do,” she advises. “It costs us nothing, and it gives so much.

“I’m grateful every day. And I talk to my young donor every day. I say to them, ‘I’m so sorry you’ve ended up in the body of a 43 year old. But I’ll do my best to still have fun’.”

Penny Hamilton

Penny Hamilton recalls her three months on the waiting list for a new heart as a “dark time”.

She joined the list on July 31, 2021 when Victoria – where the 65 year old lives about two-and-a-half hours north of Melbourne in Shepparton – was in the grip of Covid restrictions.

And a few months earlier, cardiology specialists at The Alfred Hospital had told Ms Hamilton her heart failure was so severe that without a transplant, she only had one to two years to live.
“I cried and I got angry and I got silent,” she recalls. “But they did offer me a lifeline.”
A 2014 diagnosis of non-ischaemic dilated cardiomyopathy set Ms Hamilton on the path to requiring a transplant.
Medication and an implantable cardioverter-defibrillator (ICD) and pacemaker kept her in reasonable shape until she noticed, on a 2019 trip to Ireland, that she couldn’t keep up with her travelling companions.
The exhaustion and breathlessness Ms Hamilton felt escalated until, in January 2021, she “went down in a heap”.
“My blood pressure was so low they thought I was going to die,” she recalls. “I was weak, fatigued, had brain fog. For those who have had Covid, that’s what people on the transplant waitlist feel like all the time.”
She was moved from hospital to hospital until landing at The Alfred in Melbourne, suffering the “trauma” of having her defibrillator misfire “ten times in a row” along the way.

“It felt like a horse was kicking me,” she says.

Ms Hamilton was discharged from The Alfred feeling “so weak … I was using a Zimmer frame to walk” and experiencing severe nausea that made it difficult for her to eat – but also motivated to be healthy enough to pass the “workup” required to make the waitlist.

This involves comprehensive testing to ensure the transplant surgery has the greatest chance of success. She passed, then the anxiety-riddled wait began.

“I had to learn to carry my phone everywhere – it was life or death,” she recalls. “I talked to a psychologist, a hypnotherapist, I read books on how to relax. But nothing relaxed me.”

Ms Hamilton also had to wrestle with the fact “someone has to die for you to live”. When she received “the call”, she was both “delighted and frightened”.

She and husband Geoff barely talked on the drive to Melbourne, but they did hold hands most of the way. Covid restrictions meant they were unable to be together again until her discharge a few weeks after her seven-hour surgery.
Her recovery has been slow, but she says she has “so much more energy now”. She has also found “marvellous” support through Facebook group Together in Transplant.

Ms Hamilton has now registered as a donor “for everything except my heart” – “I thought, no one wants a third-hand heart,” she says. She urges others to do the same.
“I often think of my donor and their family. Words can’t really express how grateful I am,” she says.

“(My donor) gave me life. I’m 65 and I’d like to have a couple more decades of living life, doing art, enjoying my friends.”

Sharon Hoskin

A week before Sharon Hoskin’s 31st birthday, her world came crashing down.

After suffering a debilitating flu and shortness of breath, the South Australian mum was diagnosed with cardiomyopathy and told she had five to eight years to live.

“I was a single mum with four small children,” Ms Hoskin says.

“I smoked, drank coffee and cried. I knew it was bad, but that’s all I did for five weeks.”

Now less than a week from her 55th birthday, Ms Hoskin is “loving life” and grateful to have received a lifesaving heart transplant. Her left hand even bears a tattoo “in honour of my donor” to serve as a reminder.

Medication and regular testing kept her in good shape following the shock diagnosis. But in her late 30s, she ended up in hospital with a pacemaker and an implanted defibrillator after “almost passing out at work”.

“When my first granddaughter was a month old, I had my first shock from the defibrillator,” she recalls. “If I didn’t, I would have died.

“I went on to have 17 more shocks.”

Ms Hoskin says from here, she “deteriorated over the years” and was told she needed a transplant after suffering chest pains, vomiting and enduring multiple shocks one night.

She was officially placed on the waitlist at age 51 – about five months after starting the workup to ensure she was healthy enough for a transplant.

The process involved having all her teeth removed and replaced with false teeth to nullify the risk of gum infection, which had the potential to damage her new heart.

“That was traumatic,” she says. “But they wouldn’t put me on the list until I’d done it.”

After just eight days on the list, a new heart was found.

“(While on the waitlist) my phone was on me constantly. Even at work it was in my hand, which was usually a no-no,” she says.

“I slept with it, I went to the bathroom with it. Every time it rang, I jumped.

“I was also terrified. I never use the word ‘goodbye’, but I rang all my children and said goodbye, because I believed I wouldn’t make it.”

Ms Hoskin was almost right – after her four-hour surgery, doctors contemplated turning her life support off. But she rallied and was discharged two weeks later.

Thanks to this “miracle”, Ms Hoskin is now enjoying life with husband Chris, her four kids and five grandkids (set to be six by year’s end), and working full time as a manager in a jewellery store.

“Yes, a lot of bad stuff happened,” she says. “Yes, I have all these diseases now, but I’m still here. Give me diabetes, swollen legs and not great kidneys – they’ve told me I will need (a new kidney) one day, but I don’t care.

“I feel euphoric.

“I feel that from someone’s tragedy, something wonderful happened.”

She urges Australians who aren’t registered to be organ and tissue donors to take the 60 seconds required to do so, then let their family know their wishes.

“Why take your organs when you don’t need them, when you can save so many people’s lives?” she says.

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Originally published as ‘I was terrified’: Australians share what it’s like to wait for a new organ