Growing up with a sick parent can be hard for everyone. Photo / Getty Images
Growing up with a sick parent can be hard for everyone. Photo / Getty Images
THREE KEY FACTS:
Rheumatic fever is an inflammatory autoimmune disease. Usually contracted in childhood, it starts with a sore throat and, left untreated, can cause serious, life-long damage to the heart.
Dr Jason Gurney is director of the Cancer and Chronic Conditions (C3) Research Group at the University of Otago.
Epidemiologist Jason Gurney (Ngāpuhi) experienced the pain of growing up with a sick parent, watching his former rugby-playing father’s struggle with rheumatic heart disease. Now he’s fighting back against the condition and sharing his story.
OPINION
Gurney’s childhood was plagued by emergency night-time drives to get his dad to hospital and panicky hours waiting for medical help.
His father, known as Keg, was suffering from rheumatic heart disease, a long-term consequence of rheumatic fever, which he was diagnosed with as a 14-year-old Whangārei schoolboy after coming home from a rugby tournament with a sore throat.
Gurney’s experience led him to a career in public health and he has researched the causes and effects of rheumatic fever as a way of “fighting back against the illness that had changed the trajectory of my family’s life”.
In this extract from his new book, The Twisted Chain, Gurney describes one of those late-night drives.
Winter, 2004, 2:27am
The clock on the dashboard of my Honda sedan glows neon green as we race down East Tāmaki Drive in South Auckland. Rain has left deep puddles over which we hydroplane. I’m going too fast on tyres that should have been replaced long ago, but I’ve got no choice.
Dad is leaning back in the passenger seat with his eyes closed. He says those words delicately, as though he’s begging rather than telling. He’s not in control of the car. He’s barely in control of his own body. It’s the third time in as many months that Dad and I are bound for the Middlemore Hospital emergency room. It’s early Saturday morning – the worst possible time to go to the emergency room in South Auckland.
Jason Gurney, author of The Twisted Chain. Photo / Supplied
2.28am
I have none of Dad’s wet-weather driving skills. He’d raced Holden Commodores well into his 60s all around New Zealand. So I ignore his plea for more speed. Instead, I just pat his leg and tell him everything is going to be all right. I don’t know if it will be. I’m not really talking to him, anyway. I’m trying to convince myself.
About 20 minutes earlier, my sleep had been broken by a loud knock on my bedroom door. Then Mum had walked into my room and turned on my light. Dad’s heart was playing up again, she said, and he thought it was a bad one. Could I please take him to hospital? Of course I could. When Dad was in hospital, there wasn’t any place I would rather have been than by his side. I hated it, of course. I hated every moment, sometimes so much that I fantasised about crawling out of the ward through a vent in the ceiling. But not knowing if he was alive or dead was far worse. You can’t relax when your Superman is confronting his version of kryptonite.
So I had jumped out of bed, dressed and helped Dad to the car. Whenever this happened, he tried to put on a brave face, but his body language betrayed him. If he was talking really fast, it meant he had tachycardia (a rapid heartbeat) and couldn’t bring it under control. If his speech was slow and slurring, it meant that his heart wasn’t beating enough to give his brain the blood it needed.
He could be as stoic as he liked, but his physiology would reveal the truth. We were on the road five minutes later. His stoic demeanour vanished.
“Get there as soon as you can, mate. It’s a bad one.”
We had learned it was much quicker for me to drive Dad to the hospital than to wait for an ambulance. South Auckland is so vast you could never predict how long an ambulance would take.
After we had experienced a few desperately long waits, we decided that it was quickest for me to just get him there myself. It had been pouring with rain when we’d left home, and our combined breath fogged up the windscreen. It was going to be a sketchy drive.
2.39am
As East Tāmaki Dr ends, we wait to turn onto Great South Rd . The road is empty, and only the rhythmic tick-tock of the indicator breaks the silence. Every second we wait for the red light to turn green feels like an hour. Dad opens his eyes when he realises the car has stopped.
Realising we aren’t at the hospital, he mumbles: “Just run it, mate … please.”
As I poke the Honda’s nose into the middle of the intersection, the lights for the Great South Rd turn orange.
When I was a boy, Dad had taught me to impress passengers by knowing when the red traffic light would turn green. Dad did it all the time, and one day he revealed his secret. Pulling up to a red light at an intersection, he told me to look at the light that was currently green.
“When it turns orange, count backwards from five.”
He explained that all the traffic lights were on timers, and there was always a five-second gap between one light turning orange and the next light in the sequence turning green. Once you had worked out the light sequence for a given intersection, you were all set to wow your passengers. I used this trick as a teen many times to impress my female passengers. One of them married me. As soon as the Great South Road light flashes orange, I start counting. Five. Four. Three. Two. One. At zero, I turn.
We speed down Great South Rd Road and then on to Shirley Rd . Even 20 years later, I can still remember the street names. Turn off Shirley Rd and take a right onto Swaffield Rd, which runs into Hospital Rd. I’d become so used to driving that route that once, on the way to a different hospital on the other side of South Auckland for a research meeting, I had automatically driven to Middlemore.
I didn’t realise my error until I had pulled up to the emergency room and realised I didn’t have Dad to drop off. This time, Dad was in the car, and we parked beneath the bright red sign to the emergency room and shuffled inside. Since it was the witching hour on a Saturday morning, the foyer resembled the entrance to a prison, not a healthcare facility. There seemed to be as many tall and well-muscled security guards as orderlies, and the triage nurse behind the reception desk stood shielded behind a transparent plastic wall.
I could tell Dad’s anxiety was lifting. Just being in the same building as someone who had the skills to fix him gave him a renewed sense of hope. He even walked up to the desk as casually as if he were paying for petrol. I wanted to take over – to at least fill out the forms – but I think Dad had decided I had done my job already. The only people who could help him now were on the other side of those double doors behind the reception desk. He told me to move the car from blocking the emergency room doors.
Rheumatic heart disease can be a long-term consequence of rheumatic fever. Photo / Getty Images
I wanted to stay with him, but he tried to assure me he would be fine, and we would need the car to get home once they had fixed him up. He was right. The car would be no good to us if towed away. I could not argue with Dad. He is the most cheerful man I know. He does not get angry. He gets powerfully exasperated. Dad’s version of a heated dressing-down is his right hand rubbing his temple. I wasn’t about to add to his emotional burden, so I just nodded. When I got to the door, I turned to look at Dad. He was still standing at the reception desk, leaning on his elbows, explaining his symptoms as clearly as he could to the nurse at the night window.
‘The long shadow’
These events repeated themselves many times throughout my teens and early 20s. Only once I had moved into a flat with my then-girlfriend, now wife, did the midnight shuttles down East Tāmaki Dr stop. Since I wasn’t around, and because my mum had to stay home with my sister Nicole, who has a disability, calling an ambulance became the most efficient way to get Dad to hospital.
I would still get a text from Mum to let me know that he was in an ambulance and that I shouldn’t worry; there was nothing I could do about it anyway. Often I’d throw on jeans and a jacket, and meet the ambulance at the hospital. In the years when the ambulance trips became more frequent, I’d sometimes take Mum’s advice and guiltily go back to bed and try to pretend it wasn’t happening.
My experience in those years was not unique. Thousands of families across New Zealand and millions around the world grapple with the same thing: the lifelong consequences of a childhood illness. I’ve called this chapter “the long shadow” because rheumatic heart disease tethers rheumatic fever sufferers to their illness for the rest of their (probably shortened) lives. At every doctor’s appointment, they will be the subject of increased scrutiny and curiosity. The stethoscope will linger a little longer on their chests as the doctor searches for a murmur. The doctor will suggest that it’s time for another ultrasound to see how the valve is doing, and how long it might last.
Rheumatic fever is an inflammatory disease that can develop in children after a strep throat infection. Photo / Getty Images
The conversation will then turn to the six different medicines that are keeping the disease in check: two to maintain the cardiac rhythm, two to steady the blood pressure, one to cut the bad cholesterol and one to stop the vomiting caused by the other five not mixing well. And that’s just for those who have access to good healthcare. Those without fare much worse. Still, despite the constant physical reminders of their condition, sufferers can lead a normal adult life.
Keg, for example, is a testament to this. Before he became a father, he’d been a guitar-toting high school hunk, and he played in the Hora Hora premier club rugby 60 team in Whangārei for years. He would have likely played halfback for Northland if his rugby career hadn’t intersected with that of Northland and All Black legend Sid Going. No other halfback in the country – let alone Whangārei – had a chance against Super Sid.
Dad ran marathons and managed successful businesses, including a frozen food company that was growing fast when my sister suffered severe encephalopathy. He then spent over a decade helping my sister walk and talk. The talking never came, but through hard work and my parents’ devotion, she eventually walked. I don’t know where Dad got the energy to do all this.
Toward the end of the 1980s, the dark stains of rheumatic fever’s long shadow began to surface in Dad. We would often find him napping in the middle of the day. He’d deny he was sleeping; he was “just resting his eyes”. He was a heroic napper. We would joke that he could sleep through a nuclear apocalypse and then wake up wondering where everyone had gone.
The reason behind the naps was serious. Dad’s heart was beginning to show the signs of damage typical of rheumatic heart disease. He was tired because the blood flow to his brain wasn’t sufficient. He was tired because his heart worked harder than a nondiseased heart. He was tired because he’d had rheumatic fever, and the darkness of that childhood illness obscured the light of his future.
The Twisted Chain by Jason Gurney. The book is out September 11, 2024.
The Twisted Chain by Jason Gurney, $35, published by Otago University Press. Available from September 11.
