After 20+ Heart Surgeries and Hating Exercise, I'm Ready for City2Surf

Being born in 1983 with complex congenital heart disease, I was part of a generation that saw remarkable advancements in medical care. However, even with these advancements, there were few of us who survived through childhood and into adulthood. This meant there wasn't an enormous amount of research or guidelines available on how to best manage our condition, particularly when it came to exercise. For many years, the approach was largely about caution and avoidance and that physical activity could be seriously detrimental.

Despite the lack of extensive research, what studies do exist consistently highlight the benefits of exercise for people with congenital heart disease. Exercise has been shown to improve cardiovascular health, enhance overall well-being, and even increase life expectancy. However, finding the right balance and understanding the best types of exercise for someone with my condition has always been a challenge. As one eminent cardiologist said to me, “We just don’t know”.

Navigating these uncertainties, I’ve been on a rollercoaster journey to integrate regular exercise into my life. In this blog, I’ll share my reflections on this journey, the obstacles I faced, and the victories I achieved along the way.

As a child, my experience with exercise was far from encouraging. Going back through my report cards from primary school, the majority of them noted that I "did not participate" in physical education (PE). I recall that I was often discouraged from participating in PE at school. However, my parents enrolled me in a variety of external activities. These included hockey and physical culture, and though I participated, I was terrible at both.

I also tried my hand at little athletics, where my performance was equally dismal. In fact, I vividly remember one particular race where, for the first time ever, I came second last instead of last, and we celebrated this rare 'achievement' with a trip to McDonald's. This experience encapsulates just how poor I was at sports and how little I enjoyed them. I didn’t understand what my body was capable of or what it could achieve with the right kind of exercise. This lack of confidence and understanding stayed with me for many years.

In high school, my participation in sports dwindled even further. I gradually dropped most of the external activities I had been involved in, and at school, I rarely engaged in physical activities. Exercise simply wasn't a part of my routine.

Then, at the age of 21, I underwent my fourth open-heart surgery. This was a pivotal moment in my life, but it was also marked by a lack of guidance on physical rehabilitation. There was no physiologist to support me during my recovery in the hospital, and upon discharge, I was handed a couple of sheets of paper with basic instructions on how to build my exercise tolerance. These instructions were incredibly simplistic, suggesting that during the first week at home, I should walk to the letterbox and back. The following weeks recommended gradually extending the distance. There was no mention of resistance training or any more technical aspects of exercise. While I followed these guidelines to some extent, they were not particularly helpful and certainly did not emphasise the importance of exercise as a critical component of my rehabilitation.

In my 20s, I made several attempts to incorporate exercise into my life. I tried CrossFit, walking, and various other activities, but none of them seemed to work well for me. I often found myself crashing, struggling to keep up, and eventually giving up. At 25, I moved to Cambodia to live and work. There, my lifestyle became naturally more active. I was out partying and dancing, leading an active lifestyle that included dinners, walking to and from places, and working a busy job at the World Bank. I enjoyed the company of fantastic people, which kept me constantly on the go. During this time, I became quite fit, but it was more through incidental exercise rather than a dedicated effort to improve my fitness. I still hadn't found a consistent rhythm or a way to make structured exercise work for me.

Then, when I was 33, I had to have my fifth open-heart surgery. Leading up to this, I wasn't doing any dedicated exercise and wasn't feeling very well. The night before surgery, an exercise physiologist visited me for baseline testing, which involved walking up and down the hospital corridors and a flight of stairs. While the results were okay, none of it was particularly impressive given my pre-surgery condition.

A few days post-surgery, the exercise physiologist returned, and I began to look forward to her daily visits. She set clear goals and provided detailed instructions, encouraging me to push my limits within safe boundaries. By the time I left the hospital after a week, I could do a bit more than I could pre-surgery, which felt incredible.

Upon returning home, I enrolled in a six-week cardiac rehabilitation program at my local hospital. This rehabilitation reshaped my perspective on exercise and had a lasting impact on my life. Given my poor track record with exercise, I was nervous about crashing again at the six-week mark. So, I asked to do it twice (12 weeks in total), and they were more than accommodating.

During my time in cardiac rehabilitation, a couple of things became apparent. First, I was one of the only patients there who had undergone full open-heart surgery. Most of the other patients had minor procedures, like stent insertions. Secondly, at 33, I was much younger than the majority of participants, who were mostly 50+. Thirdly, unlike many others who had acquired heart disease through lifestyle factors, I was born with congenital heart disease. These differences made me feel quite uncomfortable at times.

Many fellow patients approached me, saying I was an inspiration for having endured so many surgeries and still participating in the program. However, I found this challenging. I didn’t choose this path due to lifestyle factors; it was simply my lot in life. My focus was on understanding what my body was capable of and pushing it a little further to rebuild my life, not to be someone else’s inspiration.

Despite these challenges, the overall experience was incredible. By the end of the 12 weeks, I was the fittest I had ever been. I continued my journey by signing up with a local Clinical Pilates and Physiology place, where I further built my exercise tolerance. By the time I turned 34, I was in the best shape of my life. The newfound strength and energy were incredibly refreshing compared to what I had lived with up until then.

Since that time, my exercise tolerance and dedication have fluctuated. Like any normal person, sometimes I am more dedicated than others. Over the last five years, my exercise regimen dropped off as I prioritised my career and other commitments. This decline was disappointing and had significant consequences; I struggled with low energy levels and became more susceptible to illnesses. Recognising the impact on my health, I decided to take a different approach and refocus on exercise over the past 12 months.

The first three months went really well. I was slowly building up my endurance and seemed to be on a good run. However, during the following three months, I stagnated. Frustrated by the lack of progress, I revisited my exercise physiologist. We discussed how I would crash, immediately after or the day following any exercise, particularly resistance training and sometimes cardio training. I experienced extreme fatigue, brain fog, and an inability to think clearly or work effectively.

This was incredibly frustrating, but working closely with my exercise physiologist, we determined that stopping exercise wasn't the solution. Instead, we needed to modify my routine to match my capacity. We significantly altered my exercise regimen, focusing on gradual, manageable activities. For three months, I continued to adapt and reduce my exercise load. I kept turning up even when I felt fatigued but maintained a more stable routine that allowed me to complete entire sessions without crashing.

This approach proved much more sustainable. By modifying my exercise plan and listening to my body, I could maintain a consistent routine without overwhelming myself. This was crucial for my long-term health and well-being, allowing me to enjoy the benefits of exercise without the debilitating aftermath.

So, for the three months following my struggle with crashing, I made several significant changes to my lifestyle. I adapted my diet, stopped drinking alcohol, and continued working closely with fully-trained exercise physiologists. These adjustments helped me gradually start building up my exercise tolerance again.

The last six months have been particularly interesting. I've continued to build up my exercise tolerance, and instead of relying solely on individually modified lessons, I am now able to participate in full Pilates classes. I attend at my own pace, and until about a month ago, I was doing two Pilates classes a week, complemented by either a walk, a cycle, or a hike. Everything was going exceptionally well; I was so proud of myself. I could see my muscles toning up, feel my body getting stronger, and overall, I just felt really great.

Then, about a month ago, I had an incredibly busy week and completely overdid it. Naturally, I got sick, and the illness lingered on. It's been three weeks since that hectic week, and although I'm still a bit unwell, I'm generally feeling better. However, I missed my Pilates classes for a month and only managed to do very light walking during that time.

Returning to my first Pilates class after the break, I was pleasantly surprised to find that I still retained quite a lot of strength. I hadn’t regressed as much as I feared. After a good rest in the afternoon, I bounced back really well. This experience reaffirmed the importance of not only consistency in exercise but also the need to listen to my body and give it the rest it requires.

This Sunday, I'll be walking the Sydney City2Surf, a 14km fun run (though I won’t be running). In 2017, just a year after my fifth open heart surgery, I walked it and did exceptionally well. I was incredibly proud of myself for completing it, and the experience was truly rewarding.

Last year, feeling confident after some regular exercise, I decided to give it another go. Unfortunately, it didn't go as planned. While I did finish the course, it was a struggle. I became breathless and really struggled in the latter half. If it weren't for my amazing husband, who practically dragged me through the last seven kilometres, I might not have made it. This year, I was determined to do better. I had been building up my exercise routine in preparation for the event.

However, being sick and busy for the past month has left me feeling nervous about Sunday. Despite these setbacks, we're still going, and I'm focusing on starting slowly and maintaining my own pace. I want to avoid getting overwhelmed by the excitement of live music and the other participants who will undoubtedly be moving much faster. With my husband by my side, I'm determined to do what I can and take it step by step.

It's been an interesting journey, and City2Surf has been my primary goal for this year. Although I'm nervous, I believe I can do it—kind of. I don’t normally tell people I’m doing City2Surf because I get nervous I’ll fail. But if I’ve learnt anything, it's that it’s okay to give it a go and not finish or go slow!

From four decades of struggling with exercise, these are my top three lessons:

1. Get Specialist Help from a University-Trained Physiologist or Exercise Physiologist
   One of the most critical lessons I’ve learned is the value of working with a specialist. University-trained physiologists or exercise physiologists offer expert knowledge tailored to managing complex health conditions like congenital heart disease. Their guidance ensures that exercise plans are safe, effective, and customised to individual needs, helping to navigate the challenges and avoid setbacks.
2. Slow and Steady is Enough
   It’s tempting to set ambitious goals and push for quick results, but slow and steady progress is often the most sustainable approach. Starting slowly and building up gradually helps to avoid overexertion and crashes, allowing for steady improvement over time. This approach not only fosters long-term success but also helps in developing a consistent and enjoyable exercise routine.
3. Find Exercises You Enjoy
   The key to maintaining a successful exercise routine is finding activities you genuinely enjoy. Exercise doesn’t have to be a grind; it should be something you look forward to. For me, Pilates and electric bike riding have become the great loves of my life and parts of my routine. Identifying activities that bring you joy makes it easier to stay committed and motivated.

P.S.

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