What it’s like to be a heart transplant patient in Queensland
Brought back from death by a Sunshine Coast lifeguard, a former senior News Corp editor was lucky to get a second chance. The Australian asked him to explain what happened when he went on the list for a heart transplant.
It’s after midnight and I’m being driven from the Sunshine Coast to Brisbane to have a heart transplant. It’s deadly silent.
We’re waiting for the phone to ring and an expert to tell us if it’s too dangerous to go ahead with this lifesaving treatment in Queensland. Disco the dog and Pearl the cat are sitting on the back seat with my 11-year-old daughter, Jessie, while my partner, Anna, is driving.
The animals are confused. The humans are taut with tension.
It’s not the ideal lead-in to one of the most serious operations a person can have. But when you’ve been told to avoid having a heart transplant in Queensland and then get summoned at midnight on a Friday to have one, you’re scared witless and need reassurance.
A transplant became essential for me after five years with a condition called non-ischaemic cardiomyopathy.
How did I get here?
In 2019 I died on the Cotton Tree estuary on the Sunshine Coast after a cardiac arrest. A surf lifeguard got me back after several defibrillator shocks, 11 minutes without a breath, and I was given another shock in an ambulance on the way to hospital.
It has been a rollercoaster five years since, with several procedures putting in three defibrillators/pacemakers, three heart ablations and more than 10 defib shocks when I’ve gone into ventricular tachycardia, the heart has stopped (or has been stopping) and I’ve been zapped back to life.
My cardiologist team has done a magnificent job keeping me alive through each disaster against the odds – even the insurance company has paid my death benefit, so low were the chances of survival.
But the options have dwindled and now the Queensland transplant team believes the heart can take no more shocks and a transplant is the only option.
Except the team’s colleagues in the private world have told me to consider having it done elsewhere.
What are my options?
I know the Queensland transplant service has problems. As a journalist, I’ve read coverage in The Courier-Mail about two patients dying post-transplant from fungal infections caught from mould in the hospital roof while at the Prince Charles Hospital in Brisbane’s Chermside.
When one of the phalanx of specialists I’ve been seeing hears a transplant is a serious option, they ask if I have relatives in Sydney or Melbourne. They suggest I move there to have the transplant done because they have better outcomes.
Feeling well informed, I say: “Surely now’s the best time to have it here? They’ll have got rid of all the mould?”
“Bryce, that’s not 10 per cent of the problems the Queensland heart transplant service has,” the senior doctor replies. They have been involved sending others south to have the procedure done.
Gulp.
While continuing through the transplant assessment process, which can take up to three months, I start seriously considering options.
I speak to other doctors, including my lead cardiologist, who are not as definitive but agree moving south is an option. I talk to my brother in Melbourne about the possibility of us heading there.
System under review
The transplant service’s wider problems are confirmed when the hospital, the only one in the state that does heart transplants, writes to those in the system saying a review has been completed into the service in the wake of the fungal deaths and a series of recommendations is being worked on.
I ask for a copy of the report but am told it won’t be circulated.
My assessment is nearly complete by then, and we duly get word I need a transplant and am a suitable candidate for one.
Told the average waiting time is 10 months, I agree to be listed in the belief I have enough time to find out how to get transferred to Melbourne.
‘Get to the hospital now’
But on day 10, at midnight on a Friday (November 15, 2024), while sleeping at our holiday unit at Cotton Tree, I get the call: “We have a heart, get to the hospital now.”
We rush to make the beds – tenants are moving in, in a couple of days – throw the pets on the back seat and frantically text for a second opinion.
“Sorry for midnight text. I’ve just been asked to go to hospital for a transplant. Do I go??”
Within minutes the specialist has replied. And follows up with a call. He has talked to the transplant team and the heart is perfect for me. He tells me I shouldn’t pass it up.
We drive on, the die cast, the man who has kept me alive says “do it”.
At hospital well after 1am, there’s a series of tests immediately taken and scans done.
Then I lie in a ward bed with my daughter, my partner by our side, for hours waiting for the surgery. I go through a checklist. The will is done; I’ve sent an email to my partner with details on all the current financials and obligations; I text a small group of family and friends, telling them I’m in, and not to bug Anna until she’s got enough post-op information to pass on. I call my brother. I can’t call Mum and Dad because I don’t want to cry in front of my two girls.
(I cry reading this piece to my partner. She says: “That’s the first time I’ve seen you cry since we were called for transplant.”)
I intended to have some videos prepared for Anna and Jessie in case I don’t make it, but in 10 days on the list haven’t prioritised it.
They come to get me midmorning.
What I didn’t know then
I head off not knowing that one in five Queensland patients is dying within the first year of transplant. I don’t know that many patients get diabetes post heart transplant. I don’t realise the operation will send me into stage four kidney failure (true story).
Post operation, it’s easy to see flaws in hygiene and cleaning standards and, to someone newly immune-suppressed, meeting the wife of a golden staph patient in the kitchen area is a very scary moment.
But in a couple of weeks I’ll be past the year mark. I won’t be one of the 21 per cent, the one in five, who dies.
And I owe a great deal of thanks to some very special individuals in the transplant team who are keeping me alive.
I can email the transplant team and they reply within minutes. I can get a transplant cardiologist on the phone 24/7. Some of the nurses have empowered me to drive my own outcomes.
They are the best people, working in the worst conditions, covering barely humane hours.
What Queensland needs now
I’m talking about problems that no potential transplant patient should face, knowing I will continue to rely on these people for the rest of my life. But the good staff are that special, I’ll happily front up for my regular checks after this or the myriad emergency problems that keep cropping up, knowing they’ll do their best to save me again.
It’s tough to imagine how hard it would have been to pack up the family for a year to move, get on another waiting list and recuperate from a heart transplant.
Queensland needs its own service. But it needs one well managed and appropriately resourced. And the process of fixing this needs to be transparent.
Or more Queenslanders are going to die wondering – wondering if, like me, they should have gone through with it.
Bryce Johns is a former senior News Corp editor.
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