My Accidental Heart Journey

My name is Robert. I’m a 51-year-old husband, father, runner, guitar player and nonprofit professional. And after a 41-year break, I am a recovering heart patient again. I was born with tetralogy of Fallot. I had open heart surgery when I was 10 years old and never looked back. Until now.

It’s now been five weeks since valve replacement surgery and I’m grateful that my recovery has been as good, if not better, than expected. I’ve returned to work. I walk 3 or 4 miles a day and my doctor has cleared me to return to running, one of my favorite activities, next month. While my recovery has been predictable, my journey to awareness of the need for this surgery was much more unusual.

I’ve led a healthy life. I’ve paid strict attention to my diet. I am a dedicated runner and love to participate in marathons. Up until 2013, whenever I saw my cardiologist, we’d have the same conversation:

• Your heart sounds the way a tetralogy patient should sound.
• I love that you do these marathons but you’re nuts!
• Stop if you need to.

It was exactly what I wanted to hear and I never asked follow-up questions.

My wife and I relocated to Canada in 2013. When I went for my physical, the cardiologist suggested I have a complete workup including an EKG, stress echo and a few other tests. After what seemed like an eternity, the cardiologist joined me in her office and said “You’re a fascinating subject.”

She shared that while I had the exercise capacity of a 30-year-old (not bad since I was 49), the right side of my heart was enlarged to the size of a 65-year-old man. My cardiologist had never mentioned this. However, I had been seeing a general cardiologist. Had I been seeing a congenital specialist, he or she would have been known what to be looking for.

What I didn’t know at the time, and which my doctor shared with me, was that a missing valve can cause your heart to become enlarged. My right ventricle was now three times the size of my left. It was quite a shock since I had done marathons as well as other activities and felt great.

The doctor told me that many CHD patients with my condition are asymptomatic. And it’s possible that I would never have symptoms. But that could change. She strongly suggested I see an adult congenital cardiologist when I returned to the U.S.

Upon my return to New York, I found an excellent congenital cardiologist (who also introduced me to ACHA). After some testing, it turned out that my Canadian doctor was spot on. My right side was three times the size of my left and my new doctor strongly recommended valve replacement surgery.

Our move to Canada may have saved my life. If it wasn’t for that fortunate coincidence, I would have kept doing what I was doing. My journey, which included doing a few things right and a few things wrong, has taught me the following:

1. Be Vigilant About Your Health: One thing I got right was understanding the seriousness of my heart disease. My family has a history of heart disease and obesity so I’m obsessive about diet and exercise. My doctors from Canada and the U.S. strongly suggested doing the surgery now while I was healthy. Do whatever you can to ensure that you have every option available to you.
2. Ask Questions: This is where I got it wrong. Ask your doctors lots of questions. I never did because I heard what I wanted to hear. It was only by coincidence—and by seeing a congenital cardiologist in Canada—that I heard something very different.
3. Be Your Own Biggest Advocate: Like the flight attendant says, put your oxygen mask on first. Make sure you’re doing everything possible for yourself so then you can take care of others. Treat yourself well, get the right care and demand the best.

Note: Always make sure to check with your ACHD cardiologist before beginning any exercise routine.