COVID-19 (Coronavirus)

What It Means for Adults with Congenital Heart Disease

ACHA's COVID-19 Resources

COVID-19 is a new virus. It can affect your respiratory system (nose, throat, lungs), heart (new or increased arrhythmias), and possibly lead to pneumonia and acute respiratory disease.

Because it is a new virus, there is limited evidence to make specific recommendations. However, based on experience with this and other viral illnesses, patients with lung and heart disease (including congenital heart disease) are at increased risk of becoming sick if infected with COVID-19.

The patients with congenital defects included in this higher risk group include those with:

  • single ventricles or those palliated with a Fontan circulation.
  • chronic cyanosis (oxygen saturations <85%).
  • heart failure or cardiomyopathy requiring medication.
  • defects requiring medication.
  • pulmonary hypertension (high blood pressure in the lungs).
  • heart transplants.
  • significant co-existing conditions (such as liver, kidney or chronic lung disease).
  • patients with reduced immunity including Down syndrome, DiGeorge syndrome and asplenia.
What can adults with congenital heart disease do to protect against COVID-19 and reduce the risk of catching the virus?
  • Wash your hands frequently with soap and water and/or use sanitizer.
  • Clean and disinfect surfaces that you touch frequently daily. This includes tables, doorknobs, light switches, countertops, handles, desks, phones, keyboards, toilets, faucets, and sinks.
  • Plan social gatherings based on recommendations from the Center for Disease Control and Prevention’s (CDC) new COVID-19 Community Levels.
  • Take everyday precautions to keep 6 feet between members of your household and other people.
  • During a COVID-19 outbreak in your community, stay home as much as possible. This will further reduce your risk of being exposed.
  • If someone in your home is sick, they should stay away from the rest of the household. This will reduce the risk of spreading the virus in your home.
  • Avoid sharing personal household items such as cups and towels.
  • Avoid unnecessary exposure to children. Although children with COVID-19 may have milder symptoms, they can pass on COVID-19 to those who are more at risk.
  • Avoid crowds and people who may be sick.
  • Avoid any unnecessary travel.
  • For more information on steps you can take to protect yourself, see the CDC’s How to Protect Yourself.
What can adults with congenital heart disease do to prepare for social distancing?
  • Talk to your healthcare provider, insurer, and pharmacist about getting at least a 30-day supply of your regular prescription medications and medical equipment.
  • If you use oxygen, other lung support, or durable medical equipment, make sure you have enough supplies and know how to use your equipment.
  • Take your medication as prescribed.
  • Stock up on supplies that will keep you and your family safe and healthy. This includes healthy food and regular medications. You might want to review CDC’s Household Checklist.
  • Establish ways to regularly communicate with family and friends.
  • Create a household plan of action in case of illness.
  • Keep a thermometer in the house.
  • Check guidance from CDC regularly.
  • Stay up to date with information from the CDC, and your state and local public health departments, as the recommendations may change.
What if you or a member of your household has symptoms?

Symptoms related to COVID-19 include fever, cough and shortness of breath. If you have any of these symptoms: 

  • Contact your primary care provider and your ACHD cardiologist to ask about your symptoms by phone, patient portal or email.
  • Limit visitors. Stay away from the rest of the household to decrease the chance of spreading the virus in your home.
  • Follow strict hand washing techniques. Avoid sharing household items.
  • If your symptoms are worsening, contact your provider or health department.
  • If you have a medical emergency, call 911. Tell the dispatcher your symptoms, that you have a cardiac condition and if you have known exposure or diagnosis with COVID-19.
How can you cope with this extra stress?

As COVID-19 spreads and we take action in our communities to combat the spread of disease, it is natural for some people to feel concerned or stressed. These strong emotions can trigger an elevated heart rate. Take steps to help yourself cope with stress and anxiety.

Things you can do to reduce stress:

  • Take care of your body. Take deep breaths, stretch, or meditate. Try to eat healthy, well-balanced meals, exercise regularly, get plenty of sleep, and avoid alcohol and drugs.
  • Continue to follow a routine and regular schedule.
  • Continue to take all medications as prescribed.
  • Take breaks from watching, reading, or listening to news stories and social media. While it’s important to stay up to date, hearing about the pandemic repeatedly can be upsetting.
  • Make time to unwind. Try to do some other activities you enjoy. Spend some time outdoors if you can, but avoid crowds.
  • Connect with others. Talk with people you trust about your concerns and how you are feeling.
  • Call your healthcare provider if stress gets in the way of your daily activities for several days in a row.
  • Watch ACHA current and past webinars dedicated to COVID-19 and the CHD patient:
How can adults with congenital heart disease access care?

If you do not have a primary care provider, a Federally Qualified Health Center near you should be able to treat you. They are generally required to provide a sliding scale and treat people regardless of ability to pay.

Ask to speak to a nurse and determine if telehealth appointments are available. If they are, that may be safer than visiting your doctor in person, if there is community spread in your area.

Check with your state’s health insurance exchange and/or Medicaid. Many states are temporarily opening enrollment. If you’ve lost your job, check with your state’s unemployment office, resources promoted by your governor or local community organizations and resources.

What do you need to know about COVID-19 vaccine options?

Getting vaccinated against COVID-19 protects you, as well as people around you. Current data shows the COVID-19 vaccination will keep you from becoming seriously ill if you do get COVID-19. Three vaccines are available in the United States to prevent COVID-19.

The first two, Pfizer-BioNTech and Moderna, are known as messenger RNA (mRNA) vaccines. They work by telling the body how to respond when exposed to COVID-19. Neither vaccine contains a live virus nor affects your DNA. Each requires two doses, and both are close to 95% effective. The vaccines will not give you COVID-19.

  • Pfizer-BioNTech
    • 2 injections are given 3 weeks apart.
    • It is important to get both injections to get the full effect of the vaccine. Your second dose should also be the Pfizer-BioNTech vaccine.
    • Fully authorized in the United States for ages 16 and above and has Emergency Use Authorization (EUA) for ages 12-16.
  • Moderna
    • 2 injections are given 4 weeks apart.
    • It is important to get both injections to get the full effect of the vaccine. Your second dose should be the Moderna vaccine.
    • EUA approval for ages 18 and older.

Johnson & Johnson’s Janssen COVID-19 vaccine is the most recently approved one. It uses an inactivated adenovirus or common cold virus and works by telling the body how to respond when exposed to COVID-19. It does not contain live virus and will not give you COVID-19. It only requires one dose and is 72% effective. 

  • Janssen
    • 1 injection
    • EUA approval for ages 18 and older.

It is normal to have side effects after getting either vaccine. This means your body is building protection against the coronavirus. Side effects occur more commonly after the second vaccine and are generally mild to moderate. They go away in a few days.

  • The most common side effects are:
    • Injection site pain and swelling
    • Tiredness
    • Headache
    • Chills
    • Fever
  • Severe reactions, known as anaphylaxis, are rare. If this happens, call 911 immediately.

Here are some other key points about COVID-19 vaccines:

  • More vaccines are being developed.
  • If you have had another vaccine (like influenza), you should wait at least two weeks before you get the COVID-19 vaccine.
  • It is OK to get the COVID-19 vaccine if you had COVID-19, but it is recommended that you wait 90 days after your infection before taking it.
  • If you are pregnant or breastfeeding, consult with your doctor before getting the vaccine. 
  • The COVID-19 vaccine takes at least 2 weeks after the second dose to be fully effective. Even though the vaccine may prevent you from getting severe COVID-19, it’s going to be a while before enough people are vaccinated to prevent the spread of the virus and you can go back to normal activities. It’s important to continue to wear a mask, wash your hands often and stay six feet from others even after you are vaccinated.
  • The CDC recommends who should get the vaccine first. Individual states then create their own plan.
    • Most ACHD patients fall in the Phase 1c vaccine group unless they qualify under the Phase 1a/1b categories due to other factors:
      • People ages 16-64 with underlying medical conditions that increase the risk of serious, life threatening complications from COVID-19.
    • For information about when you can get the vaccine, contact your local health department.

ACHA thanks Jamil Aboulhosn, MD, Ahmanson/UCLA Adult Congenital Heart Disease Center, Los Angeles, CA; Aric L. Gregson, MD, FIDSA, Infectious Disease Specialist, Los Angeles, CA; and Ami Bhatt, MD, Massachusetts General Hospital Adult Congenital Heart Disease Program, Boston, MA

Related Links:    

What are the ACHA Medical Advisory Board's COVID-19 vaccine recommendations?

Any adult with congenital heart disease (CHD), their family members, and everyone who is caring for someone with CHD, should be fully vaccinated with one of the COVID-19 vaccines. 

If you have any of the following, you are at the highest risk of death or severe illness, and it is very important that you get fully vaccinated:

  • Eisenmenger syndrome
  • pulmonary hypertension
  • cyanotic CHD
  • heart failure
  • kidney problems
  • arrhythmias

If you have any questions, follow the CDC’s guidelines and speak to your healthcare team.  

ACHA COVID-19 Face Mask
ACHA follows the guidelines outlined regarding masks and COVID-19 from the Centers for Disease Control and Prevention (CDC).
One size fits most children (over the age of 4 years) and adults | 100% cotton | 2-Ply | Washable for multiple uses


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