‘Life is a gift’

Marty has refused to be defined by his congenital heart conditions, and his open heart surgeries. In fact they have inspired him to live life to the full.

Marty’s heart conditions became evident as a toddler. An exceptionally high energy child, Marty started to have fainting episodes.

“Mum used to say that as a child I’d be buzzing around, running around and then it would all go quiet and she’d just find me lying somewhere going blue.”

Doctors diagnosed three congenital heart defects: a bicuspid aortic valve, a ventricle septal defect (VSD) and Wolff Parkinson White (WPW) syndrome.

In those days, the late sixties, neonatal heart surgery was in its infancy, so Marty and his parents had a few years to wait before any kind of treatment could occur.

“My mum and dad never knew whether I’d survive or not. As a result, I had this extremely close bond with my mum, which I kept for my whole life. I had this really special intuitive relationship with her and it all goes back to how much care I received in those first few years.”

In 1973, a few months before his fifth birthday, Marty underwent his first heart surgery to correct his VSD. The surgery was a success – although the emotional impact would later take its toll in adulthood.

Impact of Wolff Parkinson White in childhood

Marty found the arrhythmias caused by WPW syndrome had the biggest impact on day-to-day childhood life.

“Your heart goes in to fibrillation and it really starts going crazy. In my case, it would go up to over 200 beats per minute. This could happen anytime, anywhere and that really affected my childhood.  I was a really intense, kind of active person, but that really held me back.”

An ardent football fan, Marty was frustrated he couldn’t play because the WPW affected him during games and meant he struggled to cope with training. However, as an adult he discovered summer football, a shorter version of the game where he could play goalkeeper.

“It’s 20 minute halves and I found that, in this time-frame, mostly the WPW didn’t kick in. There were games where it did and I’d just have to stand there and think I hope someone’s not going to shoot because I can’t do anything. I still play. It is social but it’s very competitive social.”

He also took up cycling as an outlet for his energy. “In my late teens and my early 20s I’d go on these massive cycle trips. I ended up cycling all round New Zealand in the school holidays and stuff. I’d think I’m gonna do this, I’m gonna overcome this bloody thing.”

However, Marty was always aware that he would need further heart surgery on his valve in years to come.

Emotional impact of childhood surgery

One long-lasting side effect of Marty’s childhood surgery was its emotional impact. As a man in his early twenties, Marty found he was having trouble forming relationships. It was only when he went to counselling that he became aware of the impact that the first operation had on him.

“What happened, back as a four-year-old, was that I experienced a massive sense of rejection. I have a memory, which I buried for many years, of my mum dropping me off in the hospital for the surgery. She wasn’t allowed to stay.”

Having flown regularly from Nelson to Wellington with his parents for earlier cardiologist appointments, the four-year-old Marty knew he was a long way from home and felt abandoned.

"To be left in Wellington at such a young age, not understanding why my mother was going back to Nelson, was terrifying. When she walked out that door, something broke in me. As a result of that rejection, I built up all these walls in my life to keep people at a distance to prevent more hurt via rejection.

“Through the counselling we were able to address this, the walls came down and I was able to become my true self. But that in itself was quite a big process. It took some pretty intense counselling. It was life changing.”

Electrophysiology study and ablation

The arrhythmia episodes brought on by WPW also continued to impact Marty’s lifestyle as an adult. Triggers included the cold, stress, being in water and strenuous physical exercise, including sex. He never knew how long an episode was going to last – anywhere from 10 seconds to more than an hour.

Finally, when Marty was in his early thirties, his wife at the time, encouraged him to seek further treatment for the episodes.

Marty was booked in for an electrophysiology (EP) study (a test to measure electrical activity in the heart) and a radio frequency ablation (a procedure that uses radio frequencies to ablate the area inside the heart causing the abnormal heart rhythm).

Unfortunately, because of Marty’s bicuspid aortic valve, the cardiac team were unable to successfully carry out the ablation. He was told he’d need a ‘transseptal puncture’, - a procedure which punctures the heart wall (septum) allowing a more direct route to the left side of the heart for ablation.

Marty returned to the hospital later that same year, was prepared for the procedure, only for the specialist to be called away on an emergency. The second failure was enough to deter him. 

“I thought, OK that’s it. I don’t care, I’ve lived with it up till now, I’m going to continue to live with it, I’m not going back.” 

A second attempt at ablation

It was another decade before Marty agreed to a second attempt at the ablation – largely as a result of pressure from his then partner.

“Often a heart condition causes the people who are closest to you anxiety. For them it’s something foreign, they don’t really understand it. But for you personally, you’ve had it for your whole life so it’s not such a big deal. It really affected my partners.”

The second ablation also proved unsuccessful. The doctors discovered two extra electrical pathways in the heart that needed to be ablated, but they were concerned about complications and requested an MRI.

The MRI revealed an aortic aneurysm, a bulge in the wall of the aorta (the major artery that delivers oxygenated blood from the heart to the body).

The cardiologist said that as well as an ablation for the WPW symptoms, Marty also needed a Bentall Procedure, an operation to replace part of the aorta and the aortic valve.

Third time lucky for ablation

In October 2012, the medical team performed a four-hour ablation procedure. It was third time lucky.

“Afterwards, my surgeon said he felt like a matador trying to take the bull down.  Apparently, it was a really big area they had to ablate inside the heart.”

Marty says the impact of the successful ablation has been huge.

“Since then, I’ve not had fibrillation at all. I’ve had irregular heartbeats but it has never gone into that fibrillation. It’s amazing because that was something that held me back in sport and exercise. I mean I always pushed myself, but I could never push myself too much. That was a massive change.”

Recovery from Bentall Procedure

Three years later Marty underwent a successful Bentall Procedure. From the moment he came out of recovery he was desperate to return to football and all his other activities.

“I had the procedure in May and I wanted my chest, my sternum, to be all healed and fit for the summer football season.”

The first step on his journey to recovery was cardiac rehabilitation classes, via the Heath and Rehabilitation Clinic of The University of Auckland Department of Exercise Sciences. Marty describes them as “absolutely critical” for his return to physical fitness.

“I didn’t need it for motivation to get fit. I had all of that. I needed somebody to say, ‘No Marty. Too much. Don’t go beyond this point.’ And I cannot speak more highly of the team. They were absolutely wonderful.”

With the help of the cardiac rehab team and a good dose of determination, Marty returned to summer football, five months after his open heart surgery.

Emotional recovery takes time

Whilst his physical recovery progressed at speed, the emotional recovery was not as simple. Marty knew from his previous experience and from his doctor about the emotional fallout that could come after heart surgery.

“My surgeon gave the example of a patient, a staunch Kiwi guy who never cried, who was really emotional after the surgery. In my case, it was the exact opposite. I’ve always been really in touch with my emotions, I wear my emotions on my sleeve, but a few months after my procedure I noticed that I wasn’t feeling anything. It was like my emotions were gone. I was numb.”

Four months post-surgery Marty was travelling in Spain and had the opportunity to watch Barcelona (football team) play live at Nou Camp, one of the most legendary football stadiums in the world. It was something he’d wanted to do all his life.

“This should have been one of the most exhilarating experiences of my life. However, I felt nothing. It was like I was watching the game in a glass box.”

On his return to New Zealand, Marty told his surgeon how he was feeling. The surgeon warned that in some cases people’s emotions are changed permanently by the surgery.

“That was really, really disturbing.  The good news was that slowly the numbness subsided, but it took a good year to year and a half until I felt like I was the old Marty again.

“I think that’s a really interesting impact of surgery. Doctors talk about it, but not that much because the focus is all on the physical - the recovery, the healing of the sternum, making sure you don’t lift anything over a kilo, making sure you walk each day. It’s all about the physical recovery. But with the emotional recovery, you’re left to your own devices really.”

Outlook on life

Marty’s life-long heart conditions have hugely influenced his outlook on life.

“Having a heart condition since birth has meant I’ve seen life as a gift. I’ve always seen life as about giving back to others. Every day I’ve woken up knowing I have another day as a gift and wondering how I can use it to help others.”

As a result, he’s taken teams of volunteers to Ethiopia with Habitat for Humanity, a charity that helps provide homes for people in need. More recently he’s got involved with a health charity in Ethiopia, The Hamlin Fistula Hospital Ethiopia.

His heart condition has also impacted on his lifestyle. “I’ve never smoked, I’ve never taken drugs and for the majority of my life I’ve been a tea-totaller – but since my last procedure I enjoy the odd wine. I’ve made really healthy decisions because I have an existing heart condition, and it impacts the way you look at the world.”

That said, Marty believes it’s important not to let a heart condition define you. “Don’t let your heart be a disability, use it as an opportunity for life.”

 

Shared November 2018

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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