Right now, somewhere around 1.4 million adults in the U.S. are living with adult congenital heart disease (ACHD), but fewer than a quarter of these adults are getting the specialized care they need to live a long, healthy life.

"Many congenital heart defects are repaired very early in a person's life, when he or she is an infant or young child. If you're an adult living with a congenital heart defect repaired long ago, what you may not realize is that you require specialized care to continue to be healthy," says Dr. Valeria Duarte, adult congenital heart disease specialist at Houston Methodist. "The same goes for an adult who's only recently had his or her congenital heart defect repaired."

That's because, even after successful repair, a congenital heart defect puts you at a higher risk of developing complications, including:

• Abnormal heart rhythms (arrhythmias)
• Heart failure
• Heart infections (endocarditis)
• Heart valve problems
• Pulmonary hypertension
• Stroke
  
  

"In addition, someone with congenital heart defects may need to have additional procedures in adulthood," adds Dr. Duarte.

If you're an adult living with a congenital heart defect, it's important to understand your condition, how it affects your current and future health and how to stay healthy long-term.

Dr. Duarte is here to share her expert advice for living a healthy life for those with ACHD.

Preventing complications requires care from an ACHD specialist

Whether your congenital heart defect is simple or complex, as well as whether it was repaired when you were a child or an adult, there are steps you need to take to ensure you stay healthy, out of the hospital and continuing to do the things you love.

In addition to checking in with your primary care physician, you should be seen regularly by an ACHD specialist in order to monitor for common complications.

"An ACHD specialist is specifically trained to treat you. He or she understands your condition in detail, knows the potential long-term complications to be on the lookout for, as well as how to proactively screen for these complications," explains Dr. Duarte. "And, he or she can help optimize your medications as your condition changes over time."

The most frequent complications of ACHD are arrhythmias and heart failure. And ACHD specialists are experts in the surveillance imaging and other diagnostic tests needed to routinely examine your heart health and spot these complications before they become life-threatening. Decreased exercise capacity is another frequent issue that you may be monitored for.

"The frequency of your checkups with an ACHD specialist will vary based on your specific condition. Someone with a very simple defect may only need to be seen every other year. But someone with a more complex defect, or someone who is frequently admitted to the hospital, may need to be seen multiple times per year. Most people need to be seen at least once per year," says Dr. Duarte. "Our goal is to keep your health as optimized as possible so that you stay out of the hospital and healthy at home."

It's important to know how your condition affects the rest of your health

While your ACHD specialist knows everything about your condition, there are some key components of your condition you should know, too.

"I always ask my patients to memorize three or four key facts about their particular condition, such as their specific diagnosis, when they were diagnosed and the major surgeries they've had to correct their condition" says Dr. Duarte. "This way, in the event you experience signs of an ACHD-related complication and need to go to the ER, you can pass along the important information about your condition that can help an ER doctor quickly provide the very specific care you need."

The most common symptoms that bring someone with ACHD into a hospital include:

• Shortness of breath
• Heart palpitations (the feeling of your heart racing)
• Lower extremity edema (swelling in your legs)
• Decreased exercise capacity
  
  

In addition, having ACHD even affects how some of your everyday care needs to be administered.

"You may have a particular arm that doesn't give accurate blood pressure readings, and you need to know that so nurses and doctors don't use the wrong arm and are alarmed by an abnormal blood pressure measurement," warns Dr. Duarte. "In addition, your EKG may look different than what's traditionally considered normal, so having a copy of your EKG on hand for comparison can be really helpful."

You'll also want to consult with your ACHD specialist before having surgery or getting pregnant. For instance, it's important to check with your specialist if you need antibiotics prior to dental procedures.

"Your condition can impact other surgeries you may need, and there are specific factors about your cardiac condition those specialists may need to consider while planning your treatment," explains Dr. Duarte. "And, if you're pregnant, your ACHD specialist will need to monitor your pregnancy very closely in order to prevent complications. He or she also needs to be involved in the discussions to plan your delivery."

Be sure you're taking steps to live a heart-healthy life

In addition to understanding your condition and getting the care you need, there are lifestyle behaviors you can manage at home on your own that can help you stay healthy.

"Since people living with ACHD are predisposed to heart-and-vascular-related complications, it's important to stay committed to healthy lifestyle habits such as getting regular exercise and adopting a heart-healthy diet," recommends Dr. Duarte.

Any amount of exercise is better than none, but try to aim for at least 150 minutes of moderate intensity activity every week. This could include cardio exercises such as walking, jogging, swimming, cycling or playing a sport you enjoy.

When it comes to eating a heart-healthy diet, Dr. Duarte recommends:

• Limiting salt
• Avoiding fried foods
• Eating plenty of veggies
• Limiting processed carbs and meats
  
  

"For those with ACHD, living a healthy, normal life requires taking extra steps to protect your heart health," says Dr. Duarte. "There have been so many medical advances that have helped children with congenital heart diseases survive into adulthood — but these adults still need specialized care to continue having good quality of life."

Next Steps:

• Learn more about the specialized care Houston Methodist offers adults with congenital heart disease