If you were born with congenital heart disease, you’ve probably spent a lot of time in doctor’s offices, hospitals or even operating rooms. Maybe you had surgery as a baby or needed treatments growing up to help your heart work better.
Now that you’re an adult, you might wonder what comes next. Do you still need to see a cardiologist? Are there things you should be doing to stay healthy? And what if you feel fine —does congenital heart disease still affect you?
The truth is congenital heart disease isn’t just something from your past — it’s something you’ll need to manage for life. But that doesn’t mean you can’t live a full and active life. With the right care, good habits and support, you can take charge of your health.
Here are five important things to know about living with adult congenital heart disease (ACHD).
1. Your heart needs lifelong care
As you age, your body changes and so does your heart.
“If you’re an adult who was born with a congenital heart defect, you might not realize that you still need special care in adulthood to stay healthy,” said Kenneth Fox, MD, MBA, a congenital cardiac surgeon with Banner – University Medicine. “Repairs done in childhood may be outgrown over time or other heart-related issues might develop.”
Congenital heart disease puts you at a higher risk of developing:
- Heart failure
- Arrhythmias (irregular heartbeats)
- Heart valve problems
- Endocarditis (heart infection)
- Pulmonary hypertension
- Stroke
Think of it this way: You wouldn’t skip oil changes for your car just because it’s running smoothly, right? Your heart needs the same care — regular maintenance goes a long way.
2. You’re not alone
Living with ACHD can sometimes feel isolating. Maybe friends don’t understand why you have to skip a high-energy hike. Or perhaps you feel out of place in a world where most people assume heart disease only affects older adults.
But here’s the truth: You’re part of a growing community. Thanks to medical advances and care, more children with CHD are growing up to live as healthy adults. In fact, more than one million adults in the U.S. live with ACHD.
“As understanding and experience have improved over time and through research, patients with congenital heart disease have experienced longer, healthier lives across various diagnoses,” Dr. Fox said. "Advancements in technology have enabled catheter-based interventions that once required open surgery, and medical progress has facilitated better non-operative management as well.”
There are support groups, both online and in person, where you can connect with others who truly understand what you’re going through.
3. Finding the right heart specialist is important
Not all cardiologists are trained to manage ACHD.
“Adults with congenital heart disease need to see physicians with a certain degree of understanding and experience, and sometimes certain health care providers don’t even realize that they are not the best person to care for some of these patients,” Dr. Fox said.
That’s why it’s important to find a cardiologist who specializes in ACHD. These specialists are trained to understand the intricacies of congenital heart conditions and how they interact with other aspects of your health.
If you’re unsure where to start, talk to your health care provider or visit the Adult Congenital Heart Association directory for a list of specialists. Don’t settle for “good enough” care — your heart deserves the best.
4. It’s OK to advocate for yourself
As an adult, you might feel like you’re walking a fine line between the pediatric world where you started your journey and adult medicine. This can make finding the proper care tricky, especially if you also navigate insurance and referrals.
“Some patients with ACHD may struggle to find an appropriate medical home,” Dr. Fox said. “Others may face significant challenges with finances, maintaining insurance coverage or navigating changes in that landscape.”
Don’t be afraid to ask questions, push for referrals or insist on seeing a specialist. Bring copies of your medical records to appointments and keep a list of questions or concerns handy. You might also bring a family member or friend to help you take notes or speak up during appointments.
5. Lifestyle choices matter
You can’t control your congenital heart defect, but you can control how you take care of yourself. Heart-healthy habits are especially important when living with ACHD. These include:
- Eating a balanced diet: Focus on whole foods, such as fruits, vegetables, lean proteins and whole grains. Limit processed foods, added sugars and salt.
- Staying active: Regular exercise strengthens your heart and improves your overall health. Work with your cardiologist to create a safe exercise plan tailored to your condition.
- Avoiding smoking and excess alcohol: Smoking damages your blood vessels and increases your risk of complications while drinking too much alcohol can strain your heart. Both are best avoided.
Take baby steps. Start with one habit, like swapping out sugary drinks with water, and build from there. Your future self will thank you.
Takeaway
Living with ACHD means being part of a unique community of strong, resilient individuals. While the journey has its own set of challenges, it also offers opportunities to grow, learn and thrive.
Remember, you don’t have to face it alone. With the right health care team, a healthy lifestyle and support from others who understand, you can lead a full and meaningful life. So keep advocating for yourself, cherishing your wins and caring for your heart.
