Preparing for Medical Emergencies as an Adult with Congenital Heart Disease

In a medical emergency, time is critical. Having your medical history, medications, and emergency contacts readily available allows first responders and healthcare providers to make informed, possibly life-saving decisions. In the case of an adult with CHD, it is even more important for the Emergency Department (ED) physician to have knowledge of the issues specific to your condition, because assessing and managing any CHD can be complex because it is so diverse.

• The name(s) of your CHD(s)
• Surgical history and outcomes
• Implanted devices (for example, pacemaker, ICD)
• Current medications and dosages
• Important non-cardiac health history
• Any complications or risks you have had related to your heart defect
• Known allergies (medications, latex, food, contrast dye, etc.)
• The name and phone number of your cardiologist

1. Create an Emergency Plan

Develop an emergency plan with your adult congenital heart disease (ACHD) team. You should know:

• The symptoms your team considers an emergency
• The phone number to call to get 24-hour ACHD coverage
• Any special risks or needs you have
• The ED your ACHD team recommends for you

Inform loved ones, roommates, or caregivers about your plan.

• Make sure they know how to call your ACHD team in an emergency and that they have contact information.

2. Talk with your support system

Talk to family and friends about:

• Your condition
• How to recognize emergencies
• When to call 911, your ACHD cardiologist, or both
• Learning CPR

3. Recognize signs of a common emergency

• Chest pain or discomfort
• Sudden rapid or irregular heartbeat
• Difficulty breathing
• Uncontrolled bleeding
• Coughing or vomiting blood
• Fainting or losing consciousness
• Confusion or sudden change in mental status
• Severe headache or sudden vision changes
• Severe dizziness or weakness
• Persistent vomiting or diarrhea
• Pain in the chest, abdomen, or other parts of your body
• Head or spine injury
• Allergic reactions (swelling, hives, difficulty breathing)

In Your Home, Car, Purse, and Phone (Medical ID App):

• ID (driver’s license or passport)
• Health insurance cards
• CHD details, surgical and device history
• Medication list with dosages
• Allergy information
• A photograph or copy of your last EKG
• Contact info for:
  -ACHD specialist
  -Primary care doctor
  -Emergency contacts
• Advance directive and/or living will

When Traveling:

• Keep your key medical records with you when you travel:
  -Notes from your last office visit with your ACHD team
  -Recent EKG
  -List of medications
• Review your travel plans with your ACHD team to address any outstanding medical issues before beginning your journey.
• Buy travel insurance that allows you to cancel your trip for any medical reason or care (including pre-existing conditions) and includes medical evacuation coverage.
• Carry medications and a copy of prescriptions with you.
• In an emergency, go to the ED first and call your ACHD team from the ED.
• If you are unable to call your ACHD team, provide the ED staff with your cardiologist’s contact information. You can also ask a friend or family member to call your cardiologist on your behalf.

Consider:

• Wearing a medical ID bracelet or necklace
• Carrying a health passport (for example, ACHA’s Personal Health Passport)
• Keeping a laminated card from ACHA’s Personal Health Passport in your wallet
• Using your phone’s Medical ID feature (iPhone or Android)

Keep one at home and in your car. Include:

• Bandages, gloves, scissors, tweezers, cotton swabs
• Thermometer, cold compress, hand sanitizer, blanket
• Health tools: blood pressure monitor, pulse oximeter, blood sugar monitor
• Copy of medical info (paper and/or USB drive)
• Extra doses of your regular medications

• Post emergency numbers near your phone and entryway.
• Save your cardiologist’s number in your phone.
• Make sure your mobile phone displays emergency contacts.
• Know the fastest route to your preferred ED.
• Understand your insurance coverage for emergency care.