Darren

Arrhythmia

Atrial fibrillation

Heart valve problems

Learning to put on the brakes

Darren had always lived life at 'full throttle', so finding out he had a heart condition that might slow him down was a bitter pill to swallow.

Whether it was boxing, riding his motorbike, restoring antique cars or travelling the world, Darren was constantly on the go.

He'd always maintained a high level of fitness, so when he first noticed he was becoming breathless for no obvious reason, it seemed a little strange.

Then in his early 30s, Darren went to the GP who picked up a heart murmur but wasn't overly concerned.

"He said not to worry about it. He said they were very common, and most people just live with them and nothing happens to them," Darren explains. "So I just carried on with my life. I carried on training, travelling overseas and doing the usual stuff."

He married and had a daughter (now 20) and then, after meeting his current partner, became a stepdad to four kids (ages 23, 19, 12 and 10).

Family life was busy. Throw into the mix a house-painting business, travel, sport and hobbies, and it's hardly surprising that a minor heart murmur was the furthest thing from Darren's mind.

However, over the years, the slight breathlessness became more noticeable and other symptoms began to occur.

"It started off as a moderate thing so during that time I carried on doing my training, my boxing and pretty much led a normal life, but progressively I started to get more out of breath. I got to a point where I was climbing ladders at work and I was getting dizzy, out of breath and having a few palpitations."

In 2013 Darren went back to his GP. This time the doctor sent Darren straight to North Shore Hospital.

Cardiologist diagnoses heart valve trouble

Darren was diagnosed with a mitral valve prolapse, (a heart valve problem that stops the blood flowing correctly through the heart).

The diagnosis came as something of a surprise to Darren.

"I've led a fairly healthy life. When I was younger, I did a bit of drinking, but that was a long time ago and I’ve never smoked. I’ve just had a pretty normal life."

Furthermore, there wasn't much in his family history to suggest heart valve disease.

"The old man plays golf, mum still plays tennis and they're in their late 70s, so why I've ended up with what I've got I don't quite understand. Both grandads had heart issues (angina and heart failure) but I spoke to the cardiologist and he didn't think my condition relates to what they had."

Darren was given medication and was told he would eventually need surgery.

Complications following heart valve surgery

After five years the time had come for heart valve repair surgery.

"I was very, very nervous about being opened up, but at the time I was told that because I was fit and relatively young, they should be able to repair my valve. They did a great job."

The surgery wasn't without complications however, as Darren developed pericarditis (inflammation of the lining of the heart) and his heart was struggling to function properly. 

As Darren's heart started to heal following the surgery, he recovered from the pericarditis and his symptoms improved.

Then, however, he developed an irregular heart rhythm, called atrial flutter.

"I had a heart rate of 220 just walking quietly down at the beach. I collapsed a couple of times and then was re-hospitalised."

Darren was then treated with ablation therapy, which Darren hoped would leave him symptom-free, but again that wasn’t the case.

"I thought I had healed and then started training again at the gym. But three months after I had the ablation, I had a massive attack of palpitations and rapid heart rates which I was devasted about."

He ended up back in hospital for three days and this time was diagnosed with atrial fibrillation (AF). The news was a blow.

"I had never heard of atrial fibrillation. I knew nothing about it and I really seriously thought I had been cured and I was going back to normal life."  

More recently Darren underwent a second ablation in another attempt to improve the symptoms of the AF. 

"I'm still waiting for that to heal and I’m hoping that that's going to give me a few years symptom-free. I'm still a bit short of breath and getting quite fatigued. I was expecting the quick fix, I thought I'll get out of bed, go home, two days later I'll be back down at the gym, but it hasn't worked out that way at the moment.

"Everything takes a long time with heart stuff, but I'm not a patient person by nature, I want it fixed now. I want to run up that hill now, not tomorrow or the next year. So, it has been frustrating. When you have been active all your life it's almost like having a car with a flat tyre, you want to press the accelerator down, but you've got that clunky back wheel that stops you, so you're being held up. I can't stand that."

Dealing with the emotional fallout

It hasn't just been physical symptoms that have taken time to heal. The emotional fallout from heart surgery also took its toll.

"Mentally this has been the hardest thing I've ever had to go through. I have got to say in all honesty, I have cried more than I have in my entire life. I've been emotional like I never thought I could be. It has been a hard journey.

"I was extremely angry, worried for the future, scared about what my heart was going to do next. If I had an AF attack it was like throwing a rock into deep pond, I would just sink like a stone and there was depression, anxiety. I have never been through anything like it."

He soon found he was beginning to isolate himself from those around him.

"At one stage I shut a lot of my friends out because of my anger issues. They were there for me all the time, but I shut them out. That was a mistake, but I had a lot of other issues going on as well. I was jealous of everybody else because they were going out and doing things that I could no longer do and that took a lot of getting over and that's part of the symptoms I think."

Darren decided to get some counselling to help him overcome the emotional challenges.

"I was one of these bulletproof characters and I didn't do weakness particularly well. So I had counselling and the counsellor was really good and we had a few laughs along the way," he says.

These days he's much more positive, saying the counselling really helped, as has the support of his family.

"They've been pretty amazing, my missus especially, she's been 100%. She's been to every meeting, she comes along to all my hospital appointments, if I'm in hospital she is always there."

Looking for answers

Educating himself about his heart condition has also been very important for Darren's emotional wellbeing. 

"I have found it really good to ask questions and go to different doctors and learn different things. I've paid privately to see different cardiologists just to clarify certain things and I've found that knowledge has really been empowering. I need to know about my heart condition. I am a 'need to know' person."

Similarly, sharing his experience with others in the same situation has been vital to his recovery.

"I've joined a couple of forums and sites online, spoken to hundreds of different people and shared my story on their sites as well," he says. "I've also managed to get a local group of people together that have AF and heart disease. We've shared stories and all of a sudden you're not on your own, you've got support and people who know what you're going through."

Keeping busy

Despite the emotional challenges, Darren has remained busy and active, focusing on the things he can do, rather than those he can't.

"I don't do boxing anymore but I've replaced it with a passion for walking. I want to take up cycling as well and I want to do more travelling. I am still working, which is good. I still ride my Harley, I've still got my American cars – that is all important stuff to me."

His advice to others is to make sure they stay busy, even if they need to moderate or change what they do.

"You've got to realise that you are still an active person, you've just got to change a bit."

He also encourages people to talk to others who have been through the same experience.

"Nobody understands heart conditions like yours, except people who have been through it. And when you look at people who have come through and done well, that inspires you to keep going. You need those people to talk to. That is very important." 

Finally, he says that patience is important because the recovery process can take time.

"Try to be patient because you might get told that you'll be right in three months' time, but  for me it took at least two years to fully come right after open heart surgery, physically and mentally. So you have to learn patience.

"Just enjoy the day, if you feel good in the morning, carry it on. The next day you might not have such a good day but just rest up, watch a bit of TV and just be nice to yourself.  You have to be nice to yourself, you really do and don't beat yourself up because it is not your fault."

Shared March 2020.