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Congenital heart disease: Working with healthcare providers


As an adult with congenital heart disease (CHD) you have contact with many professional healthcare providers who need to know about your heart issues:

  • your cardiologist
  • your primary healthcare provider (doctor, nurse, nurse practitioner)
  • your dentist
  • your pharmacist
  • specialists treating you for other health conditions

Your healthcare providers need to know about your CHD because you are at higher risk than the general population for heart problems. Your heart can be affected by medications, anesthetics, alternative therapies, contraception, pregnancy and infections.

You should know enough about your heart history to share basic information with your healthcare providers:

  • what your heart defect is called
  • whether you had surgery and when
  • the names of the medications you take and their doses
  • any allergies you have
  • the name of your primary healthcare provider or cardiologist.

You should carry this information with you in a health passport in your wallet, or on a Medic Alert bracelet or necklace.

Who should you see about your heart?

Simple congenital heart defects: People with mild heart defects (simple) have a higher risk of medical complications, even many years later. If you have a scar on your chest or back from heart surgery, you should see a cardiologist specializing in adult CHD at least once. This is true even if you were told that you were fixed or cured.

The adult cardiologist will decide if you need to be seen regularly and who should be following your care. They might refer you to a “general practice cardiologist” or a “community cardiologist”. They are doctors who will see you in a private medical office instead of in a hospital clinic. Not every community has a general practice cardiologist, so you may have to travel to another community.

If you have a simple heart defect and have never visited an adult CHD specialist, contact the adult CHD centre nearest you to make an appointment.


Moderate / complex heart defects: 
If you have moderate or complex CHD you must be seen by an adult CHD specialist. You have a higher risk of health complications than people without CHD. Your adult CHD cardiologist is the best person to advise you on how to stay healthy.

If you have had a heart procedure named after a physician (Blalock-Taussig shunt, BT shunt, Fontan, tetralogy of Fallot, Mustard for example) you are considered to have complex CHD and must be seen by an adult CHD cardiologist routinely. If you are seeing a community cardiologist, ask for a referral to an adult CHD cardiologist or contact the adult CHD centre nearest you.

The different kinds of cardiologists

The kind of cardiologist you see depends on the type or complexity of your condition. If you have simple CHD, you may need less monitoring than someone who has complex CHD. Again, if you had heart surgery as a child or young adult, make sure you see a cardiologist specializing in adult CHD. Let them decide who should care for you and your heart.

Community cardiologists (non-CHD cardiologists) mostly see people with acquired heart disease and not CHD. You may see a community cardiologist instead of an adult CHD cardiologist or you may see both. This is based on the type of heart defect you have and your overall health.

I have a great relationship with my cardiologist. He has a good understanding of my condition and the path that is being followed, and the possible issues that may arise.

It is important to know that acquired heart disease and congenital heart disease are very different. Recommendations for people with acquired heart disease DO NOT always apply to adults with CHD.

Working with your primary healthcare provider

A family doctor, a nurse or nurse practitioner may be your primary healthcare provider. This person is the link between you, your cardiologist and other healthcare providers. Be sure to keep your primary healthcare provider informed about your general health.

I feel that my family doctor is well informed about my heart issues, since she gets a copy of my clinic letters after every cardiology appointment I attend.

Your primary healthcare provider is the person who helps you to find resources, understand the information you have been given and refers you to a specialist when necessary. Ask them if they are receiving reports from your cardiologist and other healthcare specialists. If not, find out what needs to be done to make this happen. You want to make sure that all of your healthcare providers are kept up-to-date with your medical information. 

 

What to look for in choosing a primary healthcare provider

Treating CHD is a medical specialty. Your healthcare providers may not have much experience treating people with CHD, especially adult CHD. So it is important for you to know as much about your heart condition as possible, and to carry information about your condition to share with them. Find a primary healthcare provider who is willing to learn about your heart history, as well as understand your current and future issues. They should also be willing to communicate with your cardiologist when necessary.

For questions about contraception, pregnancy and exercise, your primary healthcare provider may want to consult with an adult CHD specialist. The recommendations for you may NOT be the same as for someone without CHD. For example, an adult CHD cardiologist might advise you against using some types of birth control, or becoming pregnant, or taking part in some physical activities like weight lifting or scuba diving.

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.

Good communication is teamwork

Good communication depends on both you and your primary healthcare provider. It is important for you to be honest with them to maintain a trusting relationship. Find a healthcare provider you feel comfortable with, and who takes your concerns seriously. Remember, any relationship involves give and take – you need to be open, honest and respectful. They should respect your feelings and concerns too. Try to find a healthcare provider you can work well with.

You won’t always agree with your healthcare provider’s advice, so ask questions, make suggestions and share your concerns. It is almost always a good idea to talk about your disagreements before switching to someone new. Neither of you should feel challenged if you ask for more information.

My advice to others with CHD is to have total faith in your doctors and surgeons and be VERY open when discussing your problem.

You may want to bring a support person to medical appointments with you. Sometimes this is helpful when you are having a difficult conversation or receiving a lot of information.

Working with community care providers

Throughout your life with CHD you will meet many healthcare providers in your community:

  • non-adult CHD cardiologists (also called community cardiologists)
  • cardiac rehabilitation specialists
  • dentists
  • dietitians
  • mental health specialists
  • obstetricians and gynecologists
  • physiotherapists and occupational therapists
  • pharmacists
  • social workers

If any of these people are giving you medical treatment or recommending a rehab or exercise program, they should know about your heart defect.

Cardiac rehabilitation

In the past you may have been told not to exercise. We now know that regular, moderate physical activity is good for most adults with CHD. However, it is important for you to check with your adult CHD cardiologist before beginning any cardiac rehab or exercise program. They will be able to give you advice or recommend a fitness program suitable for your needs.

My health care team has been very good about encouraging me to walk more while letting me find the diet that works for me.

Dentist

Maintaining excellent oral hygiene is important for people with CHD because of their increased risk of developing a heart infection called infective endocarditis. Bacteria can destroy the 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.

Visits to the dentist every six months are recommended for people with CHD. Teeth cleaning and other dental work, can allow bacteria to enter the blood stream and travel to the heart. Some people with CHD – including people with an artificial heart valve – need to take antibiotics before dental work to help prevent infection. If you aren’t sure if you should take antibiotics, talk to your cardiologist and your dentist. They can refer to the formal recommendations in the 018 AHA/ACC Guideline for the Management of Adults with Congenital Heart Disease.

Pharmacist

Your pharmacist is part of your healthcare team. They need to know about your heart defect, so they can give you their professional advice about:

  • how to take your medication (time of day, with food or without and so on)
  • interactions with other medications
  • interactions with non-prescription drugs like vitamins and herbal remedies
  • foods to avoid.

Your pharmacist can also give you reminders to make sure you don’t miss a dose or a prescription renewal.

My pharmacists always ask me how I am feeling if I start a new medication and they tell me when I need a prescription renewal.

Other healthcare providers

Any time a medical procedure or medication is recommended to you, your healthcare provider should know about your heart defect. They have to decide if you should take antibiotics to prevent infective endocarditis.

If you are going to have surgery and be sedated, the anesthesiologist should speak to your cardiologist first to understand your specific risks. You may need special monitoring and management during surgery.

Key messages
  • If you had heart surgery as a child, or if you had heart surgery named after a person (Mustard, Fallot, Ebstein for example), you should be seen at least once by an adult CHD cardiologist to decide if you need regular follow-up and monitoring.
  • Before any type of surgery, speak to your cardiologist. Make sure the surgeon knows about your heart defect and your specific risks.
  • Keep a paper or electronic record about your heart defect, including all of the details about your medications and doses, surgical or medical interventions, allergies and emergency contact information.
Related information

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.

Join a Facebook group for online support.

Learn more about congenital heart disease

This information was written in collaboration with ACHD Cardiologist Erwin Oechslin, ACHD Nurse Practitioner Barbara Bailey, University Health Network, Toronto and Dr. Alan Bell, Family Physician, Toronto.

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