Jordan

Congenital heart disease

Heart valve problems

“You’ve got to love your life”

Until recently, Jordan rarely gave his congenital heart condition a second thought. But the need for further heart surgery, combined with severe anxiety, has been challenging. Jordan explains how he’s dealt with them.

Born with a congenital heart condition called Tetralogy of Fallot, Jordan had open heart surgery as a small child to repair his pulmonary valve.

The operation aside, however, Jordan says the condition had very little impact on his childhood. He recalls yearly cardiology appointments, and being shorter and smaller than everyone else, but aside from that he lived a “pretty normal life”.

At the age of 16 he moved to Japan for his last year of school and ended up staying.

“I went and lived my life, went to university, and went to too many parties that I probably shouldn’t have,” he jokes.

Jordan returned to New Zealand in 2007 and life continued normally enough until 2019, when he was struck by a strange turn.

“I was washing my car with my friend one day and then, all of a sudden, I started shaking head to toe and I thought I couldn’t breathe. Maybe I’m a little bit vain because the first thing that went through my mind was ‘I don’t want to die in a carpark’ and the second thought was ‘I don’t want to die in front of my friend.’”

After visiting the GP, Jordan learnt he’d experienced his first ever anxiety attack. At the time he was busy at work and in the midst of preparing for a birthday trip to Paris for his mother, so assumed stress was to blame. 

“The doctor told me to calm down and said it was in my head. I was like, “oh, cool, what am I meant to do with that information? I’m travelling 28 hours to the other side of the world at the end of the week and that’s all you’re giving me? I had a panic attack for seven hours on a ten-hour flight. Not fun, I don’t recommend it.”

However, anxiety wasn’t the only issue the doctor had identified at the GP appointment. He also noticed a heart murmur and referred Jordan to the cardiologist. This came as a shock for Jordan, who hadn’t had noticed any symptoms of heart trouble.

Further heart surgery needed

At the cardiology appointment some weeks after Jordan’s return to NZ, the consultant had more worrying news. Jordan had pulmonary regurgitation, a condition where the blood flows the wrong way through the heart valve. Surgery would be required. 

“Finding out I needed heart surgery was pretty traumatic. I drove home and as I was looking out my window with so many thoughts racing through my head.  I have never been a crier, but at that point I felt overwhelmed and broke down.”

He also found it hard breaking the news to his Mum, who lives down in Whanganui.

“I said to her, ‘Are you OK? Because you’re repeating history essentially. OK I’m a lot older and I can understand what’s going on, but you’re going to see me in ICU again. Are you ready for that?’”

Waiting for heart surgery

While waiting for surgery, Jordan began managing his anxiety with lifestyle changes and medication prescribed by the GP. He started eating healthily and ensuring he had good quality sleep, as well as taking up yoga and meditation. He also gave up alcohol and coffee for six months.

“When you’re suffering anxiety, yoga and meditation are amazing. I’ve learnt a lot and I’m looking after myself a lot better, managing it day by day. The anxiety has subdued quite significantly. I love life and this whole experience has made me realise that I’m grateful for my life. We only get one life.”

Preparation for surgery

“Preparing for the surgery was an interesting experience,” says Jordan. “I had told many people that I was going back to my hometown to plan my funeral and make arrangements if the worst-case scenario was to happen. It seemed dramatic to some people but when you're in that space, counting down days to something that big, it's quite an experience. Everyone has their own journey, and if someone does this, I ask you to support them and not minimise it. 

“The thing is, nobody really understands unless they're in your shoes. I ended up going back to my hometown for about a week and just hanging out with friends and family. No funeral plans were made. I think I got to a point where I was like, if it happens, I trust everyone in my circle to put on a great celebration of life party.”

Jordan then returned to Auckland, with his Mum and had family stay with him the weekend before surgery as support. 

Recovery from valve surgery

The first thing Jordan remembers when he woke up in the ICU after surgery was seeing his mum and best friend. 

“My first word was Mum. Then I remember saying ‘Are we all done?’ I was a little bit under the influence of all the different medications, I was not really making any sense. I felt like I was fine, but I remember, when I was having conversations, I would get halfway through a sentence and totally forget what I was talking about.”
With surgery a success, Jordan was then moved to the cardiology ward for a week to recover.

“Having to sleep on my back and the pain from the incision area was annoying but the nurses helped with the management of this. I was lucky I only stayed in hospital for six days,” he says.

Support squad

Key to Jordan’s recovery and ongoing wellbeing is support from a team made up of family, friends, colleagues and health practitioners. 

“You name it, I’ve got it,” he says. “I had support from the Heart Foundation and from Heart Kids, my health psychologist, my nurse practitioner. Let's not forget the nurses! They were amazing and I always tried to annoy them with my bad jokes and banter, as they do so much good work. Also tried to supply them with chocolate. Like, they deserve it!

“My manager and colleagues checked in on me throughout. My best friend Anmaree was a legend, as always, looking after my mum while I was in hospital care, and bringing me things when I requested. I then had a good circle of friend support. It's amazing how much having people around can really help with your recovery.”
Another source of support has been talking to other people with congenital heart conditions. 

“They get it. There’s just something so powerful about that. It was just a sense of knowing I’m not alone which helped. I don’t know how it explain it beyond those words.”

He also says laughing as much as you can is really important.

“I prefer to joke more than cry. I mean crying works because it releases cortisol and all that, so it’s great for anxiety but laughing’s more fun.”

Returning home

A week after surgery Jordan returned home from hospital. The pain from the surgery was still present but manageable, however he noticed the anxiety getting worse again, so contacted his doctor about increasing his medication. 

“It really hit me after my mum had left, due to the second Covid lockdown – we had to get her out of Auckland quickly so she wouldn't be stuck here.” 

Again, Jordan worked hard to manage the anxiety with both medication and lifestyle techniques such as the yoga and medication.

More recently he’s returned to work and, although it’s early days, is hopeful having this routine will be beneficial.

Connection between heart issues and mental health

Since being diagnosed with anxiety, Jordan has read a lot about the correlation between heart conditions, and anxiety and depression.

“I’ve learnt a lot about anxiety and my heart condition, which you think I would’ve known about growing up but I didn’t. I don’t know if it’s good to research, but you learn a lot. I make sure I’m on legitimate websites and I make sure it’s all real, factual stuff - but it’s not always what you want to read.

“We may never know what caused my anxiety, but I still believe it was the heart telling my body something was wrong. I've been working hard on things like mindfulness and other exercises to manage the anxiety, so this has probably been the biggest part of my recovery.

His message to others it to be kind to yourself and not to feel ashamed of mental health issues.

“Through all of this, I’ve learnt you have to love yourself and your body. It’s not shameful getting medication and asking for help. You just want to get better and so do what you need to do. Love yourself and enjoy your life.”

He’s also trying to pay back the support he received to others who find themselves in a similar position.

“I am trying to be more active in helping out, where possible, young people going through what I, like many others, have already been through. I don't have all the answers but if my support and story can help make someone's journey that little bit easier, I am more than happy to help. It's been a hard year for so many already, and throwing open heart surgery into the mix makes it a little bit more interesting. 

“We need to remember to be kind to each other, help out where possible, and stay positive. We can always make the next day bigger and better.”

Shared March 2021