Living with congenital heart disease (CHD) may mean regular visits to the doctor throughout your life. Your health care might include visits to a cardiologist, cardiology treatments, repeat surgeries or other interventions. It depends on the type of heart defect you have and how complex it is.
Many people with CHD can go for years – even decades – before needing any interventions, while other people spend far more time in the hospital and doctor’s offices than they’d like. And some people don’t develop symptoms of their CHD until adulthood. Knowing what to watch for will give you a better understanding of your CHD, some of the complications that may occur, and measures you can take to protect your health.
Symptoms to watch for
The better you know your body when it is well, the more easily you’ll be able to notice when something isn’t right.
It is important to know that not all of the symptoms listed below mean that you are having problems with your heart, but if they persist you should contact your cardiologist and primary care provider.
- increasing tiredness or weakness
- decreased appetite or eating less
- a stomach that has been feeling uncomfortably fuller and bigger over time
- significant weight gain or weight loss over a short period of time
- severe nausea or vomiting
- change in bowel patterns (diarrhea, constipation)
- anxiety or restlessness
- palpitations or pounding in the chest that may indicate an abnormal heart beat
- bulging neck vessels.
During physical activity
- your usual program seems more difficult
- you have less exercise tolerance
- dizziness or faintness
- chest pain
- dizziness or faintness
- chest pain
- gradual difficulty breathing
- pale or bluish skin when you are not being active
Pay attention to yourself when you are feeling well.
- Are you short of breath when walking on a flat surface?
· what about up hills or stairs?
- How much exercise can you do before you start to feel tired?
- How does your energy level and stamina compare to your peers?
At your next cardiology appointment, ask about symptoms that you should watch for and whom to call if you notice them.
I know that when I feel short of breath I need to sit down and rest. If I feel dizzy or lightheaded I need to lie down, and if these symptoms persist I should go to the ER and get everything checked out.
Symptoms requiring urgent attention
Some symptoms require urgent medical attention. If you experience any of the following symptoms, don’t wait. Visit your local hospital emergency department if you develop:
- difficulty breathing (panting, gasping, or wheezing)
- irregular or rapid heartbeats (palpitations)
- chest pain
- puffy skin from retaining water (edema)
- lack of urine (dehydration which can cause arrhythmias)
- symptoms of a stroke (numbness, weakness, speech difficulty, lack of coordination)
- uncontrolled bleeding (like a bleeding nose that you can’t stop on your own)
- ongoing heartburn or shoulder pain
- changed level of alertness – confusion, extreme weakness or unresponsiveness
Changes in your heart health can be very subtle or completely obvious. For example, feeling tired can happen over time so you hardly notice how tired you’ve become, or it can happen suddenly. Heart arrhythmias can make some people feel sick to their stomach and vomit, while others just feel tired or no different at all. Anxiety or restlessness can mean many things, including caffeine or a mental health problem, but they can also signal heart problems. Puffiness in your hands, ankles or feet may be caused by fluid retention, indicating heart failure or that your heart is not pumping as well as usual. And since many people with CHD are now living into old age, they can experience other age-related diseases, such as coronary artery disease, cancer and high blood pressure.
In short, it is important that you don’t ignore subtle changes in the way you feel and how your body reacts to stress and stimuli. Remember that not everything you feel is related to your heart defect – sometimes you feel tired because you’ve done too much, or sick to your stomach because you have a bug – just like people who don’t have CHD. If you are concerned, speak to your primary care provider or cardiologist. How you feel may be very different than how someone else feels, even if they have the same heart defect.
Ask your cardiology clinic for a list of emergency numbers. You should carry your medical information with you. On the Sick Kids Hospital website, you can create your own wallet-sized MyHealthPassport with your medical information.
Mental health issues
As someone living with CHD, you may face physical and mental health challenges. Anxiety, depression, post-traumatic stress disorder (PTSD) and quality of life issues are common challenges among people with CHD. As a young child you might have experienced mental or physical trauma from surgeries or other interventions.
Maybe you were distressed about being separated from your family while you were in the hospital. The number of medications you take and the number of doctor visits you have per year may also affect your quality of life. Financial problems, lack of social support, lack of employment opportunities or support to find work, coping with a new diagnosis, adjusting to a worsening health condition or end of life issues all may contribute to a sense of helplessness in people with CHD.
Mental health is becoming more widely recognized as a serious issue in CHD. As in many other areas of health care, mental health care is underfunded. Psychologists and mental health counsellors outside of hospitals aren’t covered under provincial health care plans and many vulnerable people don’t have private health care plans.
If you wish to speak with a trained counselor, start by asking your cardiologist or primary healthcare provider for a referral. Some adult CHD programs have a psychologist on staff, or can refer you to support outside of the program.
If you have mental health problems your doctor should be able to help you find help. You are not alone. Many of us struggle with mental health issues, like anxiety and depression.
CHD and endocarditis
Your CHD may put you at risk for infective endocarditis. Bacteria can destroy heart valves and spread infection to other major organs in the body. The most common source of bacteria is our mouths, especially the teeth and gums. Your dentist should know about your heart defect so they can give you advice on how to maintain good oral hygiene with regular brushing and flossing.
If you have previously had endocarditis, have an artificial heart valve or a prosthesis such as a pacemaker or defibrillator, or have cyanotic disease, you have a higher risk of infective endocarditis than the regular population. You should be prescribed antibiotics before surgery or other procedures, including dental cleanings and some other dental work. If you aren’t sure if you should take antibiotics, talk to your cardiologist, your dentist or the doctor who will be doing the procedure.
Common symptoms of endocarditis include:
- flu-like symptoms, such as fever and chills
- aching joints and muscles
- chest pain when you breathe
- night sweats
- shortness of breath
- swelling in your feet, legs or abdomen
Endocarditis can also cause symptoms that are less common, including:
- unexplained weight loss
- tenderness in your spleen
- a new or changed heart murmur
- blood in your urine
- tiny purple or red spots on the skin, whites of your eyes, or inside your mouth
- red spots on the soles of your feet or the palms of your hands
- red, tender spots under the skin of your fingers or toes
If any of these symptoms persist, see your primary provider as soon as possible.
CHD and vaccinations
Your primary healthcare provider should also be proactive in keeping you healthy in other ways, such as giving you vaccines to prevent flu and pneumonia. This is because many people with a chronic disease – especially involving the heart and lungs – are less able to fight infections. You might be more susceptible to respiratory tract infections.
This can lead to serious complications and even death. For example, people with lung congestion and/or low immunity are more likely to develop a bacterial infection that has to be treated with antibiotics. Another example is that people with shunts have increased blood flow in the lungs, which makes them more likely to develop a lung infection.
Your family members can help you by being prepared
Family members, teachers, babysitters, and workplaces should recognize the signs of an emergency and be able to call 9-1-1. Encourage everyone to take a CPR course (cardiopulmonary resuscitation). Your family can also help with your other responsibilities if you are going to be in the hospital for a while. They can help with children, pets and calling your boss to say that you might be off work.
Be kind to your heart
Healthy heart habits will help protect your heart. Eat a healthy diet. Maintain a healthy weight and stick to an exercise routine that has been approved by your cardiology team or healthcare provider. Don’t smoke, or abuse drugs or alcohol. If you need advice about diet or exercise, ask your primary care provider for a referral to a dietitian or cardiac rehab.
I experience anxiety and depression and I take my heart health and mental health very seriously. Both are closely linked and equally important.
Keep track of your medical records
Your healthcare providers need to know about your heart’s unique history and anatomy. Your health records belong to you. More health centres and laboratories are now providing their patients with online portals to view their test results and upcoming appointments. Some adult CHD centres provide clinic reports, which list the patient’s complete heart history, and all medical and surgical procedures. Ask your cardiologist and primary care provider if these resources are available to you. If not, ask if your test reports and surgical records can be sent to you.
CHD and developmental issues
Most children with CHD can participate fully at school. But some children with CHD may have delays in development, learning disabilities or special educational needs. These delays may affect them into adulthood and throughout life. If you have complex CHD and have had multiple surgeries or other procedures, you are more likely to have developmental problems.
I'm not as far ahead in life as other people, and there are certain adulthood milestones that I have not achieved.
Pay attention to your body and how you feel, so you’ll notice when something isn’t right.
- Ask your cardiologist what symptoms you should watch for.
- Carry a list of emergency contacts and a health passport or Medic Alert bracelet.
- Be aware of your own or your child’s mental health and/or developmental delays and get help if you need it.
- Use antibiotics and vaccinations to prevent illness if recommended by your cardiologist.
- Practice heart healthy habits.
- Keep track of your medical records and upcoming appointments.
To find useful services to help you on your journey with heart disease, see our services and resources listing.
Stay informed and connected to other people with congenital heart disease.
- The Canadian Congenital Heart Alliance (CCHA) is the main organisation in Canada for people with CHD and their families. They offer patient education days and informal opportunities to meet other young people with CHD.
- The Adult Congenital Heart Association (ACHA) is a US adult CHD organisation.
- The University Health Network has an online exercise program for hypertrophic cardiomyopathy patients through step-by-step videos.
Join a Facebook group for online support.
- Heart & Stroke Community of survivors
- Tetralogy of Fallot adult community
- Zipper sisters: Women with CHD
- Congenital heart defects awareness
Learn more about congenital heart disease.
- Heart valve disease
- Heart valve surgery
- CHD transitions
- Working with healthcare providers
- CHD and birth control
- CHD and pregnancy
This article was written in collaboration with Barbara Bailey, ACHD nurse practitioner at the University Health Network in Toronto, and Lori Constable-Smolcic, ACHD patient and nurse.