Living Well with a Bicuspid Aortic Valve

Maintaining her heart’s health is something Jordan Heiden of Barre City does year-round, not just during February’s American Heart Month. That’s because Jordan is living with a heart condition called bicuspid aortic valve (BAV). 

To manage her condition, the 29-year-old exercises regularly and adheres to a plant-based diet. She also takes care of her emotional health by limiting stress. With her self-care and periodic medical check-ups, Jordan has been able to live normally and her BAV remains stable.

When Jordan was first diagnosed with BAV at age 16, she felt overwhelmed. “I remember crying later that night once I got home from the doctor’s office, feeling a little bit broken and pretty scared. I didn’t quite understand at that point what having a heart condition would mean for me.” 

She decided she would do everything in her power to stay as healthy as possible. Her dedication to a heart-healthy lifestyle has paid off. “For the past 13 years, my heart has been taking care of business,” she says. “I feel extremely lucky because I know that isn’t always the case – everyone’s situation is unique.” 

What is BAV?

BAV is a birth defect in the aortic valve, which opens and closes each time the heart beats to let blood exit the heart. Flaps of tissue in the valve called leaflets ensure blood flows in the correct direction. Normally the valve has three leaflets, but with BAV there are only two. BAV is the most common congenital heart condition, with about two percent of the population having it. 

BAV becomes a problem when the valve doesn’t close tightly, allowing blood to flow backward (aortic valve regurgitation). Likewise, the valve may not open all the way, reducing blood flow (aortic valve stenosis). Either of these can cause symptoms that include:

• Chest pain
• Shortness of breath
• Fatigue
• Fainting or feeling lightheaded
• Heart palpitations  

A bicuspid aortic valve may operate well in childhood, so that’s why many younger people with BAV don’t know they have it. But as people age the valve begins to deteriorate and symptoms may occur. If BAV becomes severe, it could lead to heart failure.

The condition may be diagnosed when a healthcare provider listens to the heart and hears a murmur — a whooshing or swishing sound caused by abnormal blood flow. An echocardiogram, a type of ultrasound image that shows how blood is moving through the heart, can be used to confirm BAV. Other kinds of diagnostic imaging, such as magnetic resonance imaging (MRI), may also be used.

Jordan found out she had BAV when she went to a cardiologist because she was having heart palpitations — stemming from a bad bout of anxiety in high school. “After running some tests, my cardiologist discovered that my aortic valve had two leaflets instead of three. It came completely out of left field,” she says.

After being diagnosed, Jordan quickly learned that her life would change. It would be too risky for her to play rugby, which she wanted to do, or any other contact sport. “I was also told that childbearing would likely be complicated for me, due to the strain that’s put on the heart during pregnancy and childbirth,” she recalls.

While grappling with those realities, she was also grateful that the BAV was discovered early. “It could have gone under the radar for far longer than it did,” Jordan says. “I went 16 years having no idea that my aortic valve was abnormal, and if not for that run-of-the-mill high school teen anxiety, I may have never gone to a cardiologist.”

Staying Heart Healthy

While BAV can be treated by surgery to repair or replace the aortic valve, the best strategy is to prevent problems like stenosis or regurgitation from developing. This can be done by:

• Following a hearty-healthy diet
• Exercising frequently
• Maintaining a healthy weight
• Taking blood pressure and cholesterol medications, if needed
• Not smoking
• Practicing good oral hygiene (to prevent bacterial infections that affect the heart valve)
• Getting regular check-ups  

In the years since learning she has BAV, Jordan says maintaining her heart’s health has stayed on her mind. Following her doctor’s advice, she has avoided contact sports and heavy weightlifting, instead choosing running and other safer forms of exercise.

“I became more cognizant of my diet and how I treated my body,” Jordan says. Her exercise regimen now includes walking, jogging, biking, going to the gym, and practicing yoga. She’s been on a plant-based diet for about 10 years, opting to become a vegan. “I’m not perfect at it, and sometimes small bits of dairy and not-so-healthy treats find their way to my plate, but I am incredibly mindful about the way I eat.” She also rarely drinks alcohol and doesn’t smoke.

A deep believer in mind-body connection, Jordan says her mental and emotional health are very much connected to her physical heart health. So, she manages stress as much as possible. “Limiting stress in an inherently stressful world is challenging, but it’s important for anyone’s overall well-being,” she says.

Her efforts have proven successful in keeping the BAV from getting worse. “I just recently had another appointment to check in on my aortic valve. We ran the usual tests – echo, EKG, all of that. I was so relieved to see that my measurements had remained stable since my last appointment three years ago. In fact, since my BAV was discovered, the measurements haven’t changed much at all,” she says.

Advice For Others with BAV

As someone who has lived with BAV for more than a decade, Jordan has some advice for other Vermonters with the same condition. “Treat your mind and body with kindness and care,” she emphasizes.

Jordan experienced immediate health improvements by adopting a vegan diet. While she’s not suggesting others need to go that far, “I do think that when we care for ourselves in new and improved ways, the results can be really powerful.”

People with BAV should also do their best to just live their lives, she advises. “It’s easy to let thoughts of a semi-faulty valve consume you, but try not to let it stress you out too much,” Jordan says. “This is advice I wish I took a lot sooner.”

There are treatments for BAV that do work, she notes. “As long as you show up to your routine appointments and listen to your care team, you can live a pretty standard life,” she says. “Maybe you won’t become a professional bodybuilder or top rugby athlete, but there are many, many heart-healthy activities waiting for you. Your BAV doesn’t have to define you.”

Sidebar: BAV FAQs

Q: How serious is a bicuspid aortic valve? 
A: It may not cause immediate problems, but eventually the valves may leak or develop other serious issues that cause the heart to work harder. This can lead to life-threatening conditions such as heart failure.

Q: What is the life expectancy of someone with a bicuspid aortic valve? 
A: Most people with BAV can have normal life expectancy with treatment and regular medical checkups.

Q: Is bicuspid aortic valve inherited from the mother or father? 
A: BAV can be inherited from family genetics, but there’s not enough known about it to say whether it comes from the father or the mother. It can skip a generation, so that’s why it’s important to know about your family’s health history.

Q: How often should a bicuspid aortic valve be checked? 
A: It depends on how severe the condition is. If it’s normal, an echocardiogram may be done every three to five years. In more serious cases, the echocardiogram may be done more frequently, such as annually.

Q: What foods should you avoid with a bicuspid aortic valve? 
A: It’s important to eat a heart-healthy diet with plenty of fruits, vegetables, and whole grains. Reduce salt, sugar, and alcohol. Avoid saturated fats and processed foods, especially meats like sausage and bacon.