For many Canadians born with congenital heart disease (CHD), childhood involved regular cardiology visits, tests, and close medical follow-up. But as life moves on, care can slowly fade into the background, especially if you’re feeling well.
The reality is this: most people born with congenital heart disease are now adults, and many are living full, active lives. That’s good news. But it also means ongoing heart (and often lung) monitoring still matters, even decades after childhood treatment.
If you or a loved one were born with CHD, here’s what you should know about adult care, monitoring, and when to check in.
What Is Congenital Heart Disease? A Quick Refresher
Congenital heart disease refers to structural differences in the heart that are present at birth. These can affect the heart walls, valves, blood vessels, or the way blood flows through the heart.
Some common types include:
- Holes in the heart (such as atrial or ventricular septal defects)
- Valve abnormalities
- Narrowed or malformed blood vessels
- More complex heart structure differences that were repaired or managed in childhood
Thanks to advances in medicine, many CHD conditions are treated early, allowing people to grow into adulthood. However, it’s important to understand that repair does not always mean cure. Over time, the heart can change, and new issues can develop.
Why Adult Follow-Up Still Matters (Even If You Feel Fine)
It’s common for adults with congenital heart disease to feel “in between” care, not sick, but not actively monitored either. Unfortunately, many heart-related changes happen slowly and quietly.
Ongoing follow-up helps:
- Detect rhythm issues (arrhythmias)
- Monitor heart function as you age
- Identify valve wear or scarring
- Catch changes before symptoms become serious
- Reduce the risk of complications later in life
Canadian and international heart health guidelines recommend lifelong follow-up for most people with congenital heart disease, even those with mild or repaired conditions.
Symptoms Adults with CHD Shouldn’t Ignore
Symptoms don’t always mean something is “wrong,” but they are important signals. Adults with congenital heart disease should pay attention to:
- Shortness of breath during everyday activities
- Fatigue that feels out of proportion to your activity level
- Heart palpitations or irregular heartbeat
- Dizziness or fainting spells
- Chest discomfort or pressure
- Reduced exercise tolerance
- Swelling in the ankles or legs
- Poor sleep or waking up short of breath
These symptoms can develop gradually and are easy to dismiss, especially if you’ve “always had” a heart condition. That’s why regular monitoring is so important.
The Heart–Lung Connection in Adult CHD
Your heart and lungs work as a team. When one struggles, the other often feels it.
In adults with congenital heart disease, changes in heart structure or blood flow can:
- Increase pressure in the lungs
- Reduce oxygen delivery to the body
- Make breathing feel harder during exertion
- Contribute to fatigue or poor sleep
This is why lung testing and respiratory assessments are often part of adult CHD care. Shortness of breath isn’t always just a lung issue, and it isn’t always just the heart either. Looking at both provides a clearer picture.
What Ongoing Monitoring May Include
Adult congenital heart disease care is about targeted, appropriate follow-up based on your history and symptoms.
Monitoring may include:
- Cardiology consultations
- ECGs or rhythm monitoring
- Pulmonary function testing (PFTs)
- Oxygen assessments
- Sleep testing if fatigue, snoring, or poor sleep is present
- Periodic review of symptoms and activity tolerance
Even if your condition has been stable for years, these assessments help establish a baseline and catch subtle changes early.
Life Changes That Can Affect Adult CHD
Certain life stages or changes often trigger symptoms or the need for reassessment:
- Pregnancy or family planning
- New exercise routines or physically demanding work
- Increased stress or poor sleep
- Weight changes
- Aging into mid-life
- Major illness or surgery
- Long periods without follow-up care
If any of these apply to you, it’s a good time to reconnect with your care team.
When to Book a Check-In (Even If You Feel “Okay”)
Consider booking an appointment if:
- It’s been several years since your last heart review
- You’re noticing new or changing symptoms
- You’re more tired or short of breath than before
- You’ve been told “everything was fine as a child” but haven’t followed up as an adult
- You want reassurance and a baseline assessment
Preventive care often brings peace of mind, and helps avoid urgent issues later.
Living Well with Congenital Heart Disease
Living with CHD doesn’t mean living cautiously or fearfully. For most adults, it means:
- Staying informed
- Paying attention to your body
- Keeping regular check-ins as part of your routine health care
With the right monitoring and support, many adults with congenital heart disease live active, healthy lives.
If you or a loved one are living with congenital heart disease and want clarity around ongoing care, PulseAir Heart & Lung Centre is here to help.
Book a cardiology or respiratory consultation today and take a proactive step toward long-term heart and lung health.