“My life altered in a way I didn’t see coming”

As a keen traveller and sports-enthusiast, Jess’ life was turned upside down when she was diagnosed with cardiomyopathy. Now armed with an implantable cardioverter defibrillator, she’s again travelling the globe and enjoying exercise.

At 23 years old, Jess was living the Kiwi backpacker dream. She had just returned to England after travelling through Egypt and Jordan, and had picked up short-term work in Oxfordshire. The plan was to save enough cash to buy a campervan and spend the summer driving around Europe. But all that changed when she suddenly collapsed while out jogging one week in.

“I was staying on a farm as a live-in carer, in rural Banbury, Oxfordshire,” Jess remembers.

“I’d gone running during my spare time. I recall getting just past the letterbox, before I felt faint and thought to myself I need to get off the road so I don’t get run over! The last thing I saw was a ditch with green grass, it’s all black from there.”

Jess was unconscious by the side of the road, but thankfully she was spotted by a neighbour who called for an ambulance. The first thing Jess remembers is coming to with unfamiliar faces peering down at her.

“They kept asking what my name was and where I lived, and I’m not sure if it was the shock or the lack of oxygen to my brain, but I recall not being able to talk and feeling paralysed. When I came around the only thing I could say was ‘New Zealand’!”

The neighbours noticed Jess looked blue. As it was raining, they tried to move her into a nearby car while they waited for the ambulance to arrive.

“I did not make the process easy for these poor people trying to help me. I kicked and screamed. I think back and wonder if maybe I thought I was getting kidnapped. Once I calmed down I was rocking like a mad person in the back of the car repeatedly apologising for what just happened. They reassured me saying it was ok and the ambulance was on the way.”

Cardiomyopathy diagnosis

Once at Banbury hospital, Jess went through a battery of tests while the doctors tried to establish what was wrong with her.

“At the start I had MRI scans, ECGs (PDF), ultrasounds, gene tests, an exercise test and possibly others - it’s all a bit of a blur now.

Once Jess had her cardiomyopathy diagnosis, she was offered an implantable cardioverter defibrillator (ICD) which she decided to take. After 10 days in Banbury Hospital she was transferred to the larger John Radcliffe Hospital in Oxford, where the ICD insertion was performed.

Jess was finally discharged from hospital a few days after the operation. Her mother had arrived from Dubai, where she’d been living at the time, and found a place for them to live while Jess recuperated before returning to New Zealand.

“I was in a very dark place”

Not surprisingly, the experience had impacted on Jess not only physically, but had also taken its toll emotionally.

“I was in a very dark place. There was so much uncertainty with what I could and couldn’t do. When I woke up from the op I was really angry. Angry at the ICD in me. The heaviness on the left side of my chest was a constant reminder to how real this all was. I also had to move back home to NZ, so all my European travel plans were out the door.

“I was so mindful of my heart rate and ICD which took its toll on my mental wellbeing. The thought of it shocking me was terrifying. Safe to say there was a lot of tears, a lot of anxiety and a lot of grief.”

There was also the challenge of getting travel insurance to cover Jess’ trip back to New Zealand. With a reciprocal arrangement between the UK and New Zealand health systems, Jess had been able to access UK National Health Service (NHS) care for free without insurance. However, getting cover for the return flight proved difficult because she had a newly diagnosed heart condition.

“It took a month until I made the flight back to NZ. During this month, I also came head to head with a new demon, anxiety. I had a number of anxiety attacks which, at the time, I thought was my heart about to have another episode. I went back to hospital a couple of times and the hospital became a bit of a safe haven for me.” 

A new normal

Once back in Auckland, Jess faced the challenge of getting to grips with her new normal. At first, there were significant hurdles to overcome.

“My life altered in a way I didn’t see coming. I lost a few things which were extremely important to me, such as my sport. Fortunately, I found yoga which gives me the energy and strength my body and mind needs. Great for my bad back too.”

She found the cardiac rehabilitation programme at Auckland Hospital useful for getting back to exercising safely, using a specialised programme designed for heart patients.

“Outside of my heart condition, but very much related because of it, I have also had treatment for anxiety and depression,” she adds.

Other lifestyle changes include daily beta blockers and a regular six monthly ICD check-ups at the hospital.

Possible warning signs?

Although Jess had no warning signs in the immediate lead up to her collapse, she now wonders if some events in her teens may have been related to her condition.

“Looking back the only warning signs – which may or may not have been related to my heart – occurred whilst exercising and must have started when I was around 16. I definitely had some bad days where I struggled with being out of breath, occasionally seeing stars and losing my vision completely.

“One memory was at rugby training where we had to run 20m and slide to run back to the mark around 20 or so times. I was really struggling to keep up, huffing and puffing. Another was on a week tramp at Outward Bound where I started seeing stars then completely lost my vision for a few seconds.”

Back to the globetrotting lifestyle

Now at the age of 31, Jess is back leading an active, busy life. Three years ago she moved to Melbourne, Australia where she balances work and her love of travel.

“I enjoy the freedom of being able to throw in a sneaky trip whenever I feel the need…I don’t have a full-time job. I currently contract to events in Melbourne which keeps me extremely busy for the summer.

“Last year, for the winter, my boyfriend and I travelled through Central America for four months. And the previous winters I found myself working and swimming with turtle friends on islands in the Great Barrier Reef, then returning to Melbourne for more event contracts.

A bystander’s perspective

Neighbour, Ann-Marie, was first on the scene when Jess collapsed. They have kept in touch with each other since. Here, Ann-Marie shares her recollection of the afternoon with Jess.

It was a Sunday afternoon and I was on my way to an antiques centre to have a bit of a browse. When I left my village, Over Worton, in the direction of Duns Tew I saw you heading towards the Ballard’s farm. As soon as I saw you, you appeared unsteady on your legs and then you fell backwards onto the road. Not softly or floppy, but like a brick. You fell backwards, straight, like you got bowled over.

I stopped my car and jumped out, all the time repeating to myself, “Let it be her laces, let it be her laces”. But I knew you hadn’t tripped. It was immediately clear to me that this was much more serious. I ran towards you and you were out. You were not responding at all. You groaned and your eyes rolled back into your head.

I grabbed my phone and luckily had a signal (I don’t have reception at my own house about 800m down the road). I dialled the ambulance and gave them the postcode of my house, as they would have to go past the spot where you were lying to get to my house.

But they kept asking for directions again and again. I remember shouting at them in total panic that you were dying and they had to hurry. I said my postcode several times.

Another car approached and I waved it down. I asked the guy in the Landrover to please take over the phone and explain to the ambulance services where they had to go as they did not understand my instructions. I remember him also getting very frustrated with them, constantly repeating where we were. It all felt like it took ages and ages.

In the meantime, I was stroking your hair, holding your hand, and I kept telling you it would all be okay. You frothed at the mouth and your lips started turning blue. The Landrover man handed me back the phone and I asked him to park on the other side of you so that in case another car would come around the corner from Duns Tew they would not drive into us.

In the meantime, the local scrapman Nick came by and stopped to help. But none of us knew any first aid and we just did what we were told on the phone by the emergency services. Nick and I took it in turns to talk to them. They asked a lot of questions and gave guidance, neither of which I can remember.

It started to rain and we took off our coats to put over you to keep you warm and dry. You were wearing tiny shorts (which you wet) and a shirt. You turned very pale and it looked like you had stopped breathing. Your lips were now dark blue/purple.

A lady appeared and she sat down next to you. She seemed more clued up than the rest of us. She also held an umbrella above you. Nick and I stood waiting for the ambulance and I was crying and feeling the most useless I have ever felt in my life. I remember thinking “Why didn’t I study something useful?” At that point both Nick and I were convinced you had died. 

 But suddenly you came around. It was like a miracle. You were breathing. Your lips got a more normal colour, and you even started talking. We asked you your name and where you were from, meaning where did you run from, as it’s quite a remote area.

You didn’t tell us your name but kept repeating “New Zealand”. You were well enough to get up and be moved to the Landrover where you sat in the back out of the rain. All this time I was on the phone with the emergency services keeping them updated.

Finally, the ambulance arrived. It felt like an hour, but I have no idea how long it took them in reality. They parked on the lane to the Ballard’s farm to not block the main road. While they were looking after you in the ambulance I was asked some questions about finding you. I wasn’t allowed to come with you as I was not family, but I remembered to ask them where they were taking you (Banbury or Oxford).

After they drove away I got back into my car and phoned my mum. I was an absolute wreck and she thought something had happened to my best friend and neighbour who is an old farmer. I felt so involved with you. It is strange how you can feel instantly attached to someone you’ve never met when they are in danger.

 

Shared July 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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4 Comments

  • Jess 21 November 2018

    Hi Becky, Thanks for reaching out! It was a super lonely time not knowing any other young folk with HCM so I hope this article sheds some light for you. I am returning home to NZ in Feb if you ever wanted to catch up and share defib stories.. ha! Totally up to you.. either way really happy you got in touch and wish you all the best for your journey xo

  • Becky 2 November 2018

    Hey Jessica you are the first person whose story I’ve read who was around my age when their life was changed by cardiomyopathy. I’m excited to read your story and see that you found a way to get back to the things you love. Thank you for sharing!

  • Jess 22 October 2018

    Hi John, I hope this message finds you well. Thanks for your words of support. Sounds like you too, have quite a story… Great to hear from someone with similar experiences. I’m sure the rewards will keep coming your way John, along with the adventures.

  • John 22 August 2018

    Great story which endorsed my own experience in Canada with cardiac arrest while hiking in the Rocky Mountains. Four days in a coma, 14 days in intensive care and 15 days in a recovery ward where I suffered sepsis, kidney failure, arrhythmia and came back to NZ with a cardiac nurse. Like you I have remained fit though out my life having cycled across America, climbed in the French alps and cycled NZ plus walked all the great tracks. The anxiety you experience is very real for me too but I am now 67 and have lived a rewarding life. Look after yourself and do all the adventures you can.

    Kindest thoughts John