In April 2019, at just 15 years old and in my GCSE year, my life took an unexpected turn. I started experiencing a series of unexplained symptoms that left both me and the doctors puzzled. The symptoms, which seemed random and unrelated, included skin lesions on my legs and feet, severe muscle pain in my lower limbs, and at times, an inability to walk.
Initially misdiagnosed with tendinitis by physiotherapists, I spent three months persistently pushing my GP for answers as new symptoms emerged. Eventually, I was referred for what I called an “MOT”—a comprehensive series of tests during a hospital admission.
The turning point came when a doctor wheeled an echocardiogram into my room. At the time, I had no idea how much my life was about to change or how often I would see the cardiologist in the coming months. She would turn out to be an incredible, caring, and supportive doctor, who would be an integral part of the extensive medical team that would care for me. Within half an hour, she delivered life-altering news: I had a congenital heart defect called coarctation of the aorta. On top of that, the coarctation was classified as severe, and I was also diagnosed with hypertension. It was a shocking revelation, especially since I had always been fit, active, and healthy. Coarctations are typically diagnosed at birth, so discovering this at 15 was incredibly rare and to this day still puzzles doctors.
Initially, the plan was to treat the coarctation with a straightforward stent procedure. However, specialists in Southampton were concerned about my unexplained symptoms, which didn’t align with the way a typical coarctation presents. More blood tests and scans followed, leading to a critical discovery: the coarctation had been harbouring a life-threatening infection called infective endocarditis. This infection was responsible for causing microembolisms throughout my body, explaining the rashes, spots, and pain I’d been experiencing.
To combat the infection, I was placed on a daily course of IV antibiotics, requiring hospital visits every day for a month. Despite this aggressive treatment, the infection persisted, and new symptoms continued to emerge. With no other options, the decision was made to proceed with open-heart surgery to repair the aorta and remove the infected tissue. From the moment antibiotics were deemed ineffective to undergoing surgery, everything moved incredibly quickly. Within a few days of receiving this news, we drove down to Southampton, where the specialist congenital heart surgeons were based. We had a rather surreal meeting with the surgeon, who explained what needed to be done, the associated risks, and all the details of my admission. Despite being in a daze and not fully appreciating the severity of how unwell I was, it was a profoundly terrifying experience for both me and my family.
Thankfully, the 7 hours of surgery was successful. I spent time recovering in intensive care and a congenital heart ward, where I was the oldest patient by about 15 years! Though my blood pressure remained challenging to control, which extended my hospital stay, I was eventually able to go home. This positive outcome is thanks to the amazing team of doctors, nurses, and physiotherapists who supported me every step of the way. Once home, a dedicated team of community nurses continued to care for me, administering daily IV antibiotics for several weeks, marking the start of my long road to recovery.
Fast forward six years, I am grateful to say I’m living a healthy and active life. I still take blood pressure medication and undergo annual cardiac reviews, where my treatment is adjusted as needed. Despite these ongoing challenges, I recently completed my first half-marathon, raising over £1,500 for Cardiac Risk in the Young.
Reflecting on this journey, I often find myself thinking about how ironically fortunate I was to develop a rather nasty infection. Without it, my coarctation might never have been discovered, potentially leading to a fatal event later in life. It’s still puzzling as to how symptoms like hypertension and a heart murmur, which likely presented for a significant part of my life, went unnoticed despite numerous health checkups and past operations.
The reality is, many children and young adults aren’t as lucky as I was, and for them, these life-threatening conditions can remain undetected, sometimes until it’s too late. This experience has fuelled my passion for raising awareness about the importance of early detection and heart screening. Simple tools like ECGs and echocardiograms can identify heart conditions that might otherwise go unnoticed, and I firmly believe that everyone, especially children, should have access to these life-saving tests. By advocating for greater access to cardiac screening, I hope to prevent others from facing the same risks I did.
