I’d known about my heart murmur for years, and they run in my family. My family doctor kept an eye on it with regular stethoscope checks and sent me for routine echocardiograms, but I never noticed any new symptoms like pain or breathlessness. To my surprise, the results of one of my routine echocardiograms showed that two of my heart valves were damaged and leaky.
My heart valve disease was caused by an autoimmune condition – a type of arthritis – that attacks healthy tissues, including my heart. This condition causes fatigue, which was masking the signs of heart valve disease. Because of this, it probably would not have been detected for a long time if my family doctor hadn’t been following me so closely.
I was referred to a cardiologist, who decided that I should be monitored to see how my valve disease was progressing. I could tell that, as I was a young woman, he did not want to send me for heart surgery too soon, but after a year of monitoring and tests, he determined that I was ready for valve replacement surgery. I remember being quite surprised when he said that my heart was enlarged but not large enough to meet the guideline-based criteria for surgery. He explained that the guidelines are primarily based on men, and as a woman my heart would probably never reach the size specified in the guidelines, so he had to use his clinical judgement.
Once I had been referred for surgery, there were additional delays because of COVID-19 and I received two new valves in June 2020 – about two and a half years after I was first diagnosed. I received great follow-up care and relished having a team of specialists supporting me as I worked to recover. I have had virtual appointments with a cardiologist, a nurse practitioner, a physiotherapist, a nutritionist and a counsellor as part of my follow-up. I found the recommended outdoor walks to be especially beneficial and my biggest piece of advice to anyone recovering from heart valve surgery is to follow the walking plan. It was difficult at first, but I got so much out of it.
My experience of living with a chronic autoimmune condition definitely helped prepare me to deal with heart valve disease and surgery. I am familiar with doctors and our health system, and used to being involved in managing my own heath. After years of being unwell before the autoimmune condition was diagnosed, it felt like a relief to have a clear, structured care plan following surgery and I was determined to make the most of it.
More than a year after my valve replacements, I can look back and see how badly affected I was by the heart valve disease without being aware of it. It’s as though I’ve discovered new gears on my bike! I can do so much more exercise now and it no longer wears me out to run errands. I will always be managing a chronic condition alongside the long-term monitoring of my heart valves, but I am excited to see my stamina continuing to improve and feel hopeful about what I will be able to achieve in years to come.