The road to recovery after cardiac arrest
Jo had lived with heart arrhythmias and coronary artery spasms for nearly two decades. But nothing could have prepared her for the physical and emotional journey that followed her cardiac arrest.
The evening that began as a family celebration ended with a trip to the accident and emergency department (A&E).
Jo – at the time just 19-years-old – was dancing at her sister’s 21st birthday, when she noticed her heart beating very rapidly. She sat with her parents for a bit, but the rapid heart rate didn’t subside. After a call to the hospital, Jo went straight to A&E where a monitor recorded her heart rate at 240 beats per minute.
“The staff tried to slow it down with different things. They made me put my head in a bowl of iced water and rub my carotid artery, stuff like that. Finally they gave me some shots of adenosine to slow it down. Adenosine is horrendous, it feel likes your heart is stopping and you’re going to die.”
Jo was told she had super ventricular tachycardia (SVT), an abnormally rapid heartbeat. She was prescribed medication and put under the ongoing care of the cardiology department as an outpatient.
“But they didn’t really know what had happened or why, so nothing much was done really. They just put me on the pills. I guess they hoped it would be a one off thing.”
SVT episodes continue
Over the next 10 years, Jo experienced a number of similar episodes which meant hospital attendances and adenosine shots.
It was hard for her to know what would trigger an episode. “One time I was in drama class and I was being a piece of toast popping up out of a toaster. Another time a friend of mine put a piece of ice down my back. One time it was playing tennis, things like that.”
With the lack of clarity surrounding her condition and its triggers, Jo lived life cautiously. “The result of the SVT was that I didn’t ever want to try things. I didn’t exercise, I didn’t want to have adventures. I didn’t want to do things that would make my heart go fast.”
Further heart events occur
Then, at 29, she experienced a slightly different event. This time she noticed an irregular beat, rather than the usual rapid one. She attended the hospital, where she was diagnosed with atrial fibrillation (AF) and accordingly prescribed a blood thinner to reduce her risk of stroke.
A week later she was lying in bed when she noticed a tight feeling in her chest. “It wasn’t like a heart attack that you see on TV, nothing like that, it just felt a little bit of tension in my chest.”
When the tension hadn’t gone a couple of hours later, Jo went to hospital. “It was only because they’d put me on new medication the week before that I thought I’d get it checked. Otherwise I probably wouldn’t have even gone in.”
At A&E she was given blood tests and hooked up to a monitor. But Jo wasn’t concerned. “I was fine. I’ve got a photo of me and my friend in the hospital gear posing and taking selfies. It was no big deal.”
The clinical team took a different view however. Although Jo’s pain was very minor, the nurse insisted on giving her morphine and the doctor came shortly afterwards to explain why.
Blood tests indicate damage to the heart
“She said, ‘Your blood results have come back and your Troptonin T is up.”
Jo was told to stay on the bed and not move. Despite the doctor’s strict instructions, Jo didn’t realise the severity of the situation until the arrival of a friend, who was also an A&E nurse. “She said, ‘Jo, they think you’re having a heart attack.’ That was a bit of a shock.”
When Jo’s friend started praying for her – and crying – the anxiety really began to kick in. “That was the first point where I thought, this is serious. I’m having a heart attack.”
Jo was transferred from Palmerston North to Wellington by helicopter for an angiogram. But rather than clarifying Jo’s problem, the angiogram revealed clear arteries and no blockages.
“The doctors said, ‘We don’t know what’s causing your problem but it’s certainly not your arteries.’ They didn’t know what the heck was happening. In the end they thought it was probably a coronary artery spasm. I thought, ‘Excellent, it’s so nice to be a medical mystery.’”
Her discharge form read “query myocardial infarction”.
Second possible heart attack
Over the next few years she remained under the care of a cardiologist and on medication for her SVT and atrial fibrillation, and life continued pretty much as normal.
In 2005, shortly before her wedding, cardiologists agreed to wean Jo off her medication for the short term so she could get pregnant. But just two months after she stopped medication, Jo experienced another event.
Again, she felt tension in her chest, blood tests revealed raised troponin T levels, and she was flown to Wellington for an angiogram. Again, the angiogram revealed clear arteries. Again, the diagnosis was a queried myocardial infarction.
Back in Palmerston North, her cardiologists were quick to restart Jo on medication and to tell her to put her plans of pregnancy on hold. It was devastating news for a young women due to get married in a month’s time.
Heart condition and pregnancy
Having moved cities after the wedding, Jo talked to her new cardiologist about getting pregnant. He agreed, on the proviso she change medication, rather than be weaned off completely.
The eventual pregnancy was monitored under the care of both the cardiology and the gynaecology team, because of the potential for the medication to affect the fetus. But it was complication free, aside from a little bit of chest pain at 36 weeks for which Jo was given nitrates.
“The nitrates give you the most horrendous headaches. I remember being 37 weeks pregnant and lying in bed with a pillow over my head because I couldn’t stand the light. It was just horrible. But really that was the only problem.”
Jo had a caesarean to avoid any further stress on her heart, and at last she and husband Andy had their longed-for little boy. A second baby boy followed just a year later.
With both pregnancies safely navigated, the couple got on with the busy life of a young family. And the heart condition seemed completely under control.
“I was on the medication and doing fine until two and a half years ago when I didn’t wake up one morning.”
Husband wakes to Jo’s cardiac arrest
Andy was meant to be at work early that day, but he’d accidentally slept in – a mistake that undoubtedly saved Jo’s life.
Their eldest son Lachie, at the time just seven-years-old, came into the bedroom and woke Andy.
“Apparently he was laughing because he thought I was making funning snoring noises. I think that was my death gurgle. Andy looked over at me and saw my eyes were rolled back and my hands were curled up, like I was having a seizure. He rolled me into recovery position and then I went limp and blue.”
Andy sent Lachie to sit in the bedroom with his younger brother Jackson, while he called an ambulance and immediately began CPR.
When the paramedics arrived, Andy had already been doing CPR for eight minutes. The team took Jo off the bed, dragged her down the hallway past her terrified sons, and into the kitchen where there was more space for defibrillation. It took them six attempts to restart Jo’s heart.
“That’s 20 minutes between when my heart stopped and when it started again. Statistically I should be dead or very brain damaged.”
Transfer to Waikato Hospital
Jo was then transferred to Waikato Hospital. “They put me on a bed of ice and sedated me and it was really a case of wait and see. They didn’t know if I would wake up, and if I did they didn’t know how bad my brain damage would be.”
When Jo began to come round the following day, the first thing Andy noticed was the way her eyes couldn’t initially focus. “For him that was the scary moment. He had to leave the room and go for a walk because he thought, ‘Jo’s not here anymore.’”
By the time he got back, Jo could focus on people and squeeze their hand in response to questions. Twenty four hours later she was beginning to communicate with words, but was emotional and confused. Her short-term memory was severely impacted. For the first few days she had trouble remembering who people were or what had happened to her.
Another angiogram revealed clear arteries, but this time Jo had an internal cardiac defibrillator (ICD) inserted before she left hospital. That way, if her heart stopped beating again, the ICD would restart it.
“I’m still a mystery which is really horrible. So I’ve got SVT and AF and possible heart attack with artery spasms and now cardiac arrest as well. So that’s a lot of things that are not right with my heart and nobody knows what or why or how. It’s very frustrating.”
The long road to recovery
Recovery from the cardiac arrest was a slow and, at times, confronting journey.
On the one hand there was the physical recovery. “We home school our kids and I was pretty much sleeping all day. I was wasted. My husband took a couple of months off work. Then when he went back, he just did mornings and came home at lunch time so I could sleep for the afternoon. It took quite a while for me to come right in terms of sleeping.”
But the real challenge was recovery from the emotional fallout, which arrived a few of months later.
“The cardiac arrest happened in the beginning of February and about the end of April, I was praying, and I said to God I might be ready to deal with the trauma of what happened. Up until then I was just really grateful to be alive.
“But from that point I spent the next few months just crying a lot. I was really angry with Andy – my husband, this guy who saved my life. I was terrible with the kids, I was grumpy, I had no patience at all. I’d just get really cross fast. And I felt terrible.
“I felt like God had given me this miraculous second chance at life and all I wanted to do was lie in my bed and close my eyes. I didn’t want to do anything. I didn’t want to see people. I had no energy. I felt so guilty about it.”
During a doctor’s appointment for her son, the GP noticed Jo’s emotional state and organised some counselling.
“The counselling was really good – everyone should have it. I’ve since found out that most people who have heart issues have major emotional fall out over the next year or two. They may have told me that at the hospital but I don’t remember it. It wasn’t something that I came away from the hospital thinking I needed to be prepared for.”
‘Mummy, we thought you were dead’
Jo was carrying a lot of guilt about the impact of her cardiac arrest on the family – particularly on her two young boys.
She recalls a day, a couple of months after the cardiac arrest, when her event was being discussed by the family around the dinner table.
“Lachie said, ‘They dragged you down the hall Mummy and we thought you were dead.’ Jackson, my youngest, was sitting right beside me, but he didn’t reach out to me for a cuddle he got up and went right around the table and sat on Andy’s knee.
“That was hard for me. I thought, ‘I’m not their safety person right now because I died in front of them.’ A big part of my counselling was around my anxiety over my kids and how they were coping.”
Sharing the journey with others
Jo also sought support from other people in similar situations. Through an online group she connected with a young Auckland woman who had also had a cardiac arrest.
“It was so brilliant. She said things like, ‘How are you doing emotionally?’ I said, ‘I’m a bit of a wreck. I haven’t been great. I’m a bit depressed.’ And she went, ‘Me too. I was terrible for the first year.’ It was so good to hear her say that. Finding other people who had been in the same situation was amazing.”
Jo also sought out support in her local area. She attended an annual ‘ICD information day’ where she met another young woman who had suffered a cardiac arrest just a month before. The pair of them recognised the need for a more regular support group, so in November 2017 they launched a monthly local coffee group.
“It’s very casual. I made it really clear that we’ve got zero medical training we’re not there for that. We’re just there to hang out for emotional support. And we’ve had lots of people who are really keen.”
‘I’m healthier now than I’ve ever been’
These days, Jo can be more pragmatic about her cardiac arrest. “It would be nice to have not had that journey but it’s also ok. I’m probably healthier now than I’ve ever been.”
She describes her ICD as her “own personal rescue helicopter”.
“If anything goes wrong, if I go into SVT or have a cardiac arrest, it will shock me way faster than a helicopter could get to me. I love it. It gives me a real sense of security and it lets me do things I haven’t done since I started getting SVT.”
Since having it inserted she’s regularly walked up the Hakarimata track – a 335 metre climb that includes 1349 steps. And this year, in April, the family completed the Tongariro Crossing.
“It took me a long time to do it. But I would never have done that before my ICD because I would have thought, ‘What if something happens to my heart while I’m up there?’”
The cardiac arrest has also changed her attitude to life. She finds she worries less about the small stuff and is learning to take the time for herself when she needs to.
“In 2016, I said my goal for the year was to get healthy physically, spiritually and emotionally. I took time to look after myself, to rest and read, and get healthy exercising. I just wanted my focus to be on the kids and my husband and just getting well.”
Now Jo’s starting to look outwards again. “I feel like I am well and I’m starting to step back into stuff. Which is exciting. It feels exciting to have the energy and the ability to do other things as well.”