Patient Success Story: Nancy's Story

November 2, 2020

I discovered at age 25 that I was born with a bicuspid aortic valve. It was found in an echocardiogram my physician ordered after she detected a heart murmur during a physical. I was told to have it checked regularly, take antibiotics before dental care to prevent infection in the valve, and live life. Eventually I might need surgery to have it repaired.

After two decades without incident, one day I had sharp chest pain with deep breathing. I was busy, so I brushed it off. When it persisted, I went to the hospital emergency department.  If I hadn’t done that, I might not be here today or lived to see my 50th birthday.  

A CT scan found an aortic aneurysm near the heart, measuring 4.7 cm. I was put under the care of a cardiologist to monitor it annually. Once an aneurysm reaches 5 cm it can rupture and be fatal because of excessive bleeding. Within four years, in May 2009, the aneurysm reached 5.1 cm and I was sent to a cardiac surgeon.

The surgeon said the aneurysm, which I was also born with (and detected through great advances in technology since my first echocardiogram), had grown a centimetre per decade of my life – and it needed to be repaired immediately. My valve had mild stenosis and could have waited another two years, but he would fix both at the same time. The only way to do so was through open heart surgery.

I quickly realized how lucky I was. Although urgent, it wasn’t an emergency. The surgeon had time – and my file from the past four years and cardiologist’s assessment – to consider and recommend the right procedure for my situation.  I was able to properly contemplate life-impacting decisions, the most important of which was what type of valve I wanted. A mechanical valve would mean taking blood thinners for life, and a tissue valve could wear out in 10-20 years which would require another surgery.

I chose to have the surgery in September, so I had time to get my life in order. I lined up family and friends to help in the days and weeks after surgery and I got my workplace ready for the leave of absence I was taking from my job as a member of the management team. The enormous benefit of doing this was peace of mind, which allowed me to focus on my recovery.

It also helped me overcome the fear.

I’m someone who likes to “watch the needle going in”. I wanted to know everything that was going to happen and would have appreciated resources like Heart Valve Voice Canada which didn’t exist then. I spent a half day at the hospital speaking to the team members and a patient about what to expect. I asked questions, read all the material and watched a video. I told people about my impending surgery which often lead me to other patients who could share experiences, including two colleagues and “friends of friends”.  

When my surgery day arrived, I felt I knew exactly what I was in for. I had no doubt that I was in the hands of experts using the most advanced technology at the time. The surgery went extremely well. The aneurysm was fixed and my valve repaired. The surgeon was able to use my own tissue. The cardiac care team was exceptional. They are highly trained health professionals in a different sphere than anything I’d experienced. Their priority is managing pain, which they helped me do using the morphine pump, because it is so fundamental to recovery.

I was home in four days and within a week I was off the narcotics, taking high dose aspirin to manage the pain. I walked twice daily, did the prescribed exercises, and watched for a fever and cough as possible signs of infection. The tenderness around my chest subsided after six weeks and I was feeling stronger every day. Everything was proceeding as planned and I would return to work in January.

Two months after my surgery at the peak of the H1N1 pandemic I had a cough, shortness of breath and chills. I suspected the flu and assumed the health system would be overburdened so I hesitated to contact my cardiologist, but I did, and he instructed me to go straight to emergency and alerted them to my arrival, giving me priority status.

I had a blood clot in the cavity around my heart which required a second open heart surgery the next day. I was “thrown off” by this emergency as this time the pain was more severe and I spent three days in the ICU. I developed pericarditis which is inflammation of the sac around the heart. It set my recovery back, taking another slow six months until I felt “recovered”.

Having had this second chance, I will never minimize how I’m feeling or put off seeking care ever again. My number one piece of advice for anyone who is experiencing heart problems (or any health problem) is to do the same. I know from experience that recovery and quality of life are much better when your heart valve disease is monitored and treated before it becomes an emergency.

My experience gave me a new sense of urgency about living life. Five months after my second surgery I was on the slopes of Whistler for an amazing spring ski trip. Within a year and half, I planned and opened a small business. There have been many milestones since – significant birthdays, weddings, great trips, births – to make life full.

But in case I need reminding, I look at the Japanese maple tree we planted to mark the milestone of my return from the hospital after my first surgery just before Thanksgiving. It was spindly, barely two feet tall. Now it’s towering, reaching for the sky.

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