Because of amazing progress in pediatric cardiology and heart surgery, the number of adults with congenital heart disease (CHD) in the United States is now higher than the number of children with the disease. There are now over 1.4 million adults with CHD, and that number is growing. If you are one of these amazing survivors, you know that your heart journey will last the rest of your life. A lot of people who had successful surgery as kids think they were "cured," but the truth is that a "repaired" heart needs specialized, coordinated care for the rest of their lives. Direct Primary Care (DPC) is the best "medical home" for you to manage this care and work with you to live a long and healthy life.
Congenital heart disease is a general term for a group of heart problems that are present at birth. There is a wide range of heart problems, from simple holes between heart chambers that may have closed on their own to very complicated ones like Tetralogy of Fallot or single-ventricle physiology that needed several open-heart surgeries when the person was a child.
The Myth of "Cured" vs. "Repaired": It's important to know that most congenital heart defects are fixed, not cured. The heart's anatomy is still not normal, which means there are risks that will last a lifetime and need to be watched.
The Important Need for Follow-Up for Life: A big problem in healthcare is that a lot of ACHD patients "lose track of" their follow-up care as adults, usually because they feel fine. This is dangerous because adults with CHD are at risk of developing late complications for the rest of their lives, such as:
Problems with the heart's rhythm (arrhythmias)
Heart failure
Heart valves that leak or are too tight
High blood pressure in the lungs
The Expert You Need: The American Heart Association and the American College of Cardiology both say that all adults with moderate or complex CHD should see an ACHD cardiologist, who has special training in adult congenital heart disease.
Direct Primary Care (DPC) is a membership-based system that lets patients talk to their doctor directly as many times as they want. Your ACHD cardiologist is the best person to see about your heart, but your DPC doctor is your main care manager, care coordinator, and health advocate. Here are some reasons why DPC is the best option for an adult with CHD:
Playing quarterback of your Team of Specialized Care: This is the most important thing your DPC doctor does.
Keeping You Connected: They work with you to make sure you never "lose track of" your appointments and surveillance imaging (like echocardiograms or cardiac MRIs) with your ACHD cardiologist.
A Central Place to Talk: They are the main point of contact, making sure that your cardiologist, any other specialists, and you can all talk to each other easily.
Professional Care for Your Overall Adult Health: Your DPC doctor takes care of you as a whole person, always with a deep understanding of your unique heart condition.
Aggressive Comorbidity Management: They work hard to keep conditions that start in adults, like high blood pressure, high cholesterol, and diabetes, under control. These can put a lot of extra stress on a repaired heart.
Important Preventive Care: They tell you how to exercise safely, make sure you get all your important vaccinations (especially for flu and pneumonia), and give you advice on your specific needs, like the importance of antibiotics before dental work (endocarditis prophylaxis) if you need them.
Personalized Counseling for Reproductive Health: Pregnancy can be very dangerous for women with CHD. Your DPC doctor can give you initial counseling and work with a high-risk obstetrician and your cardiologist to make sure you get the best care.
A "medical home base" that is easy to reach and responsive: In case of a non-emergency health problem, your DPC doctor is the first person you should call. Their quick access can help you avoid going to the ER when you don't need to and get quick, reassuring answers from a doctor who knows your complicated medical history inside and out.
Case 1: Jessica, 35, had surgery as a child to fix a hole in her heart. She hasn't seen a heart doctor in more than ten years because she thinks she is healthy. During a long intake visit, her new DPC doctor talks about how important it is to follow up on ACHD for the rest of her life. The doctor helps Jessica get a referral to a specialized ACHD center, which gets her back in touch with the life-saving monitoring she needs to protect her health in the future.
Case 2: David, 48, has complicated congenital heart disease (CHD) and is being treated by both his DPC doctor and his ACHD cardiologist. He gets an infection in his lungs. He goes to see his DPC doctor that same day. The doctor quickly gives him an antibiotic that is safe for his heart condition and tells his cardiologist about the treatment plan. This makes sure that his care is always coordinated and safe.
Q: I had my heart "fixed" when I was a baby, and now I feel great. Do I really need to see a cardiologist every year for the rest of my life? A: Yes, for sure. The top cardiology organizations in the country have very clear rules: all adults with moderate or complex congenital heart disease should see a cardiologist who has received special training in ACHD for the rest of their lives. Even if you feel fine right now, there is a real risk of getting arrhythmias and heart failure later on.
Q: What does an ACHD cardiologist do? A: An ACHD cardiologist is a heart doctor who has finished an extra, specialized fellowship that focuses on the unique, lifelong needs of adults who were born with heart defects. They are the best at dealing with the long-term effects of your condition and the surgery you had as a child.
Q: How does my DPC doctor work with my ACHD specialist? A: They work together as a team. Your ACHD specialist is the best person to help you keep an eye on your congenital heart. Your DPC doctor knows everything about you and your health. They take care of your blood pressure, your preventive care, your acute illnesses, and all other parts of your health, making sure you never fall through the cracks.
DPC is clearly better for the growing number of adults with CHD because it
Preventing Patients from "Losing Track of Follow-Up": DPC's proactive and continuous nature is the perfect solution to the big problem of ACHD patients losing touch with their important specialty care.
Offering full, whole-person care: Managing non-cardiac health problems (like high blood pressure) that are important for the long-term health of a person with a complicated heart condition.
Being the "home base" and team captain for the multidisciplinary care that all ACHD patients get is what makes you great at care coordination.
Having a congenital heart defect and living through it is a medical victory that lets you live a full and active life. But that life requires a lifelong commitment to your health and a partner who will be your medical home. Direct Primary Care gives you the proactive, coordinated, and personalized support you need to do well for many years to come.
