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“Emotional connection is really valuable”

Following his aortic dissection, John faced both physical and emotional challenges on the road to recovery. He explains how connecting with fellow survivors helped him through.

John shares his aortic dissection journey

As a policeman and sports fanatic, John was used to lifting heavy weights. So when the then 44-year-old experienced chest discomfort while carrying a couple of suitcases he knew something wasn’t right.

“I got quite an uncomfortable feeling in my chest, almost like a heavy heartburn and it didn’t go away,” he recalls. “I sat on the bed and I started to perspire quite a lot and I said to my wife, ‘This just doesn’t feel right.”

John’s wife rang the local medical centre, and an ambulance was sent to collect him.

“I was taken to the hospital where I was given some x-rays and some blood tests for a heart attack and a whole lot of other tests which didn’t include a scan.”

After 12 hours John was discharged – the doctors thought he’d possibly pulled a chest muscle.

“I actually walked out of the hospital. I rang my wife and began walking home, thinking it’s a lovely day, I’ll walk. Little did I know that at stage, there must have been a minor tear in my aorta which came to fruition two days later when a major tear occurred.”

Home alone when aortic dissection occurs

John was home alone when the aortic dissection occurred 48 hours after this first incident. He’d just finished some work on the house and was about to pick up his youngest son from day care.

“Quite out of the blue, I had this searing pain in my chest and I was seated. I stood up to make it more comfortable, and as I stood up I lost consciousness and fell straight onto my face on the floor.”

When he came to, John knew he was in serious trouble. “I didn’t have much vision, I was having trouble breathing, I couldn’t get myself off the floor and the pain in my chest and stomach was excruciating.”

John managed to get his mobile phone out of his pocket and call his wife – although he admits he couldn’t really speak, all he could do was gurgle.

Because of the incident two days previously, his wife immediately called the ambulance. At North Shore Hospital a CT scan confirmed an aortic dissection (a tear in the major artery from the heart to the body). John was blue-lighted from the North Shore to Auckland Hospital, with the paramedics prepping him for life-saving surgery as they went.

Aortic dissection surgery recovery

John woke sixteen hours later on the intensive care ward at Auckland hospital following emergency surgery to repair his aorta. He was lucky to be alive, but his world had been turned upside down, both physically and emotionally.

“I woke with a tube down my throat, a row of staples down my chest and a box load of questions. I had no idea what had just happened to me.”

For one, he had to come to terms with the fact that for the time being he was completely dependent on others for help.

“I felt a skeleton of what I was,” John recalls. “I was absolutely helpless. I was dependent on everybody that walked into that room – family, medical staff, nursing staff.”

There was also the huge question of how his life might look going forwards. He had no idea what his condition meant for his job in the police force or for his hobbies, which included a multitude of sports and outdoor activities.

“Around about the fourth day [after the event], one of the doctors said, ‘You won’t be going back to playing basketball or playing sport. Your life around those sort of things will change.’ I just lay back on the bed and thought ‘but those things are my life, that’s what brings me enjoyment, that’s what motivates me.’ It was just so significant to take all this in on top of what had just happened.”

Discharge from hospital

John was discharged from hospital after a week, still feeling overwhelmed by the situation, and lacking in both support and knowledge.

He’d attended his first cardiac rehabilitation session while in hospital, but unfortunately was the only person who’d experienced an aortic dissection in the group, which was more focussed towards those with coronary artery disease.

“I went home with very little knowledge about what to do apart from doing a bit of walking. And in fact, I ended up back in hospital for doing too much too soon.”

Emotional challenges

John recalls those first two weeks out of hospital as one of the two most difficult periods in his recovery.

“It was difficult to process the severity of the situation. I was in a really, really unfamiliar low space at that time,” he recalls. “I was still getting pain and twinges and weird things going on. I’d go into a space where I mentally left the room and I was just holding on thinking that something was going to happen again.”

One of the biggest challenges continued to be the lack of information available about his condition.

“I started asking a lot of questions about what had happened to me, why it had happened to me, and what life was going to look like for me from now on. There was a big void.”

Finally John and his family made the decision to see a cardiologist privately to get some more answers.

Follow up aortic surgery

This decision brought answers to many of his questions and considerable relief for their family. However it also brought some challenging news. Follow up scans revealed the need for further surgery to complete the repair of the aorta.

“I just about collapsed on the floor when I heard that – that was the other really low point,” John says. “But from there I got a lot of support from the specialist and my family and I went through that second operation, four and a half months later, with a much clearer head and much clearer decisions made about what the future would be for me. It was elective, but I was really happy with the decision to get that done.”

Emotional support

John received fantastic support from family and friends, however he says what he also really craved was a connection with someone like him who had also suffered an aortic dissection.

“What I really wanted was to speak to someone, face to face, who had been through my experience and who had come out the other side and was back to their new normal. That would have been fantastic.”

Fortunately, 18 months after the event, he met two other Aucklanders, Pete and Dave, who had been through the same experience. The three connected and now regularly meet up as a support team.

“It has helped us all through our journey back to our own emotional stability. Connecting with them has been really good. I wish it had happened way back in the first month.”

He encourages people living with a heart condition to connect with others through cardiac rehabilitation classes, support groups, or the Heart Foundation.

“Someone who has been through the same experience is really, really valuable.” 

A new normal

Five years on – with support from his family, his medical team and his employer – John is back at work and leading a fit and active life.

“I’ve played basketball again and all sorts of sports. I’m back in the gym five days a week, although my programme is completely different to what it used to be. I’ve passed my fitness test a number of times at work. I’ve changed what I do fitness wise, but I still get a release.”

He also makes sure he manages stress more carefully.

“I used to be able to handle a fair amount of stress, but I notice that I can’t handle that anymore, so I’ve changed. I take myself out of situations or avoid situations that cause it.”

Despite its huge challenges, John is also aware that his heart journey has had benefits too.

“The fact I’ve been through this experience is a positive thing. I look at life differently. It has slowed me down, it has given me a shake up to enjoy and experience the small, simple things in life. I commit to more enjoyable things because I feel like I’ve been given another chance.”

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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9 Comments

  • Wanda 12 November 2023

    Hi.  I’m a aortic dissection type A survivor as well.  I had my surgery on the 37th hour when I was 43yo in 2006.  I had a difficult post op course. I’ve now had a frozen elephant trunk aortic valve sparing repair in 2018.  Currently I am 17 years after my initial surgery and have severe aortic insufficiency.  Eventually, I’ll need valve replacement.  But for now, I do my best to stay compliant on my BP meds and to exercise.  Always good to meet other survivors & their course.

  • Ross 21 September 2023

    Appreciate the comments - I am 6 months into my journey and am facing many of the same emotional circumstances - can’t wait to find a local I can f2 f with . Medical team have been very helpful, AD support day in Auckland on 19th was amazing and you were mentioned there

  • Dan 13 August 2023

    Thank you for this story. I recently was diagnosed with a dilated aorta. It’s at 4.7cm now. I’m actually laying in bed crying. I’m a single father with two teens. I have this overwhelming fear that they will lose me to this. I’m 43 and feel too young to die. Your story gives me hope.

  • Sandi 10 January 2022

    Hi John. I had no idea I had a heart condition or a biscupid aortic valve until the day I ended up needing open heart surgery on 13/10/21. I had an aortic root aneurysm presenting with an A Dissection and underwent 6 hour emergency open heart surgery and I am so thankful I survived. It would be great if I could have a chat sometime with you so I can learn from your experience on the recovery process and what is normal after an A Dissection. Thanks in Advance Sandi

  • Becky 3 July 2020

    I am recovering from a type B aortic dissection.  I am an active person and am having trouble getting answers on what I can still do.  The doctor just says don’t do anything that could raise your blood pressure.  Any thoughts?? family and friends are so afraid they don’t think I should do anything.  Would love to hear from someone who has been there. Thank you

  • Michael 28 May 2020

    John,
    Thank you for sharing your story and the details of your recovery.  I started my aortic dissection recovery journey 10 April 2020.  I would be very interested in knowing how you modified your gym routine and other physical fitness changes you have made, that have worked.  If ok I have attempted to contact you through LinkedIn.

  • John 18 May 2020

    Hi Amanda, hope that you find the help and answers you need.  Happy to talk if you need.  Cheers.

  • Amanda 8 May 2020

    I am starting this journey with an enlarged aorta, alone with no answers and time to think. Thankyou for sharing

  • Michael 21 July 2019

    Hello John. Our stories are amazingly similar, especially the emotional aftermath of our struggles during recovery. I truly hope you are continuing to do well and enjoying the gift of your new life.
    Michael

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