Elle’s Story

When Elle Pendrick was told she needed her fifth open heart surgery, she was completely devastated. The Canberra woman has come to learn that complex complex congenital heart disease (CHD) has no cure. Now she’s on a mission to help others navigate life with chronic illness. This is her story, in her own words.

I couldn’t believe it. I was utterly numb and shell shocked. It was 2016 and I was barely holding onto my phone while staring at an email.

I needed my fifth open heart surgery at age 33.

Then came the flood of memories of the four other surgeries, the catheters, the hospital stays, and the recovery. I collapsed into a sobbing mess.

Logically, I knew I needed the surgery to stay alive and have any kind of life. But I couldn’t bear the thought of what I’d have to go through to get there, yet again.

I thought that after all my surgeries and procedures I was fixed. But I’ve learned that complex CHD is a life-long chronic illness with no cure. Sure, there are temporary fixes, like surgery, but they often are not permanent fixes. My heart will always be broken and need fixing.

I had hit the jackpot with CHD – for no rhyme or reason, I was gifted a lifetime of chronic illness with peaks of acute illness.

No-one in my family had heart disease, no-one at school had it, and certainly none of my friends had it. Through necessity, my family became pros at managing medical emergencies, supporting me with chronic illness, and long-distance travel for check-ups and treatment (I grew up in Wagga Wagga, NSW).

Over the decades I’d endured four open heart surgeries, umpteen catheters, a cardiac ablation and other procedures to keep me alive. The majority of which were between the ages of three days and 10 years old.

My parents are the bravest people I know. They were in their late 20s/early 30s when they had a baby with CHD, something they had never heard of. At a time of no mobile phones, no Google, no support groups, and no statistics they were charged with keeping me alive.

I tried to be a ‘normal’ teenager but struggled to keep up. I thought my CHD was done and I was fixed as I left school to explore the world.

When I was 18 I collapsed the day after my dad's 50th and was rushed to hospital. I had septicemia and pericarditis and went via air ambulance to RPA Hospital in Sydney. Prof David Celermajer was my treating doctor at RPA.

I was royally shocked when I then needed a fourth open heart surgery at age 21. I honestly thought my CHD was done, fixed, and sorted. How wrong I was!

It was my first major surgery as an adult, with no nurse-coordinator, no toys and fun, and no-one to guide me through the healthcare system. I honestly don’t know how my parents did it when I was a kid. They will always be my heroes.

I remembered all too vividly the long dark days waiting for the surgery, where I’d go over and over things. That led into the sleepless nights. I was lost for words when trying to tell my loved ones the news (luckily my family knew what to expect). I remembered being overwhelmed trying to figure out how I was going to pay my bills. Fumbling my way through sorting my leave and uni, not knowing what I was even entitled to.

I remembered the dry and boring information from the hospital. It was so useless I threw it in the bin. Waiting in the cold and sterile hospital with its never-ending hallways.

When I finally could talk, I told my family to ‘piss off’ because it was too overwhelming.

I remember feeling alone and scared.

The pain and distress continued when I got home and realised we’d forgotten some of the medication I needed. We had to spend hours with doctors and pharmacists sorting it out. Every night I woke up with dread under the heavy doona, not being sure if I could get myself out of bed. I hated the rubbish rehab plan the hospital sent me home with. I was so confused about when I could and couldn’t do things like driving, hanging out washing and even sex.

But that wasn’t the reality I lived in; I now needed a fifth surgery.

After I really wallowed and swam around in my feelings – I gathered whatever crumbs of courage I had and scoured the internet desperately for a guide, for help, for something. Anything, that would give me inspiration and practical ways to tackle this. I found plenty of dry, boring, personality-less fact sheets filled with stuff I already knew. But I didn’t find a single thing that resonated with me.

After days of going round in circles it finally dawned on me. I already knew way more than all these fact sheets combined!

I had already lived it. I had already survived it, four times over! This was not my first rodeo! In fact, it wasn’t my first, second, third, or even fourth. This was my fifth open heart surgery!

I knew exactly what to expect. I knew all the aspects of my life that this surgery would impact. I knew I’d done it four other times and my life was better after each one.

So, I dug deep, and decided to tackle this head on. I decided to approach this surgery with practicality and purpose. I decided to own the fact that I was having surgery (yet again).

I decided to make this my best surgery ever.

I made my mindset my number one priority, connecting with a mental health professional who really understood. She helped me handle anxiety and set me up with practical tips. I also found online meditation and hypnosis to ease my worries. Writing my feelings down at night was like venting to a friend.

My family pitched in without a fuss – it wasn’t their first rodeo either. But for my husband and me, it was our first. Heartfelt discussions and meal preparation united us, fostering a new level of support.

I made the tough call and put my health first, taking a break from my dream job. After homework and discussions with HR, I confidently negotiated leave. They were so supportive.

My research led to an informed decision about which hospital to go to, while self-made signs to communicate post-op, new pyjamas, and playlists set the stage for a positive experience. From a visitor plan to post-surgery meals, I had it all sorted. When I walked into the hospital, I was scared, but ready to face surgery.

When I woke up from surgery my prep helped me cope better. As soon as I could, I played my favourite songs and let my mind wander with meditation. I turned the noisy hospital into peaceful forests and sunny beaches. I used those pre-made signs to communicate. I’m proud to say that I didn’t tell my family to piss off. That sign still goes unused.

Every little victory, like sitting up, having a meal, and even having a poo was a step toward getting back to my best life.

My care team was awesome, adapting to my likes and avoiding what I didn't. Even when things didn't go perfectly, I focused on the good stuff.

When it was time to leave, I had my questions ready. They showed me how to get out of bed on my own and told me when I could drive and do chores again. We even tackled the awkward topic of sex.

On the drive home, I made sure I was comfy with pillows, and we had great food and entertainment waiting. We did forget one pain med (oops!), but this time I knew how to sort it out fast.

Rehab was a game-changer. I had a fantastic physio at the hospital, and once home, I went to full-on rehab classes twice a week.

All my planning paid off. Within six months, I was hiking in Hawaii, working back in my dream job, and living my best life!

I had succeeded and had my best surgery ever.

I really wanted to share my story because it proves that by shifting your mindset, being super practical and having a little fun along way, you can do anything.

When I got back from Hawaii I reflected on how fortunate I had been to have all that experience to draw from for this surgery. Not many other people have that experience to rely on, so, I became determined to make sure that no one ever has to go through major surgery without a guide.

So determined that I wrote a blog 'Open Heart Surgery – Tips n tricks from a pro' which went viral helping thousands. But, as I spoke to the hundreds of people who reached out, I realised that it just touched the tip of the iceberg.

So, once again, I decided to do it myself and penned 'Your Ultimate Surgery Success Guide'. It's by far the most comprehensive, practical, and relatable resource package ever made for Aussies - a must-have for anyone having major surgery!

It’s available now for anyone needing major surgery and their support network.

I will happily admit that, although I worked hard to MacGyver my surgery situation, one of the big reasons it was so different 12 years on was because of the amazing work of the Heart Research Institute.

The surgery techniques were better, the post-op care was better, the rehabilitation was better – and I know that the Heart Research Institute (HRI) played a key role in that. So, from the bottom of my broken heart, thank you!

One of the game-changers from my fifth open heart surgery was cardiac rehab. I’d always had a love-hate relationship with exercise, team sport and just general athleticism. My primary school report cards often said ‘did not participate’ for sports classes.

Discovering at 33 that I could in fact do exercise changed my life! I became fit for the first time in my life, I walked the 14km City to Surf in Sydney and had the stamina to be a Ministerial Adviser in the Federal Government.

Then, like many people, I fell off the exercise bandwagon… until I came across HRI's Congenital Heart Fitness Intervention Trial: CH-FIT in 2022. I was fortunate to qualify and be allocated to the exercise group and started regular zoom sessions.

Getting up at 6am is not my happy place, but meeting other people like me with CHD is my happy place so that made it all worthwhile! Doing squats when you’re hearing about other people’s journey or having a laugh about things only someone else with CHD can know meant the world to me!

After my first few months of exercise, I was fitter, faster, and smarter! Since then, I’ve kept up the exercise in small classes led by university trained exercise physiologists who understand CHD.

Thanks to HRI and the incredible team that runs the project, I’ve made new friends, felt a deep sense of community and am healthier.