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The basics: Get organized

  • Always keep a list of all your medications with you. Infusion patients should state that their infused medication should never be interrupted or discontinued.
  • Keep your insurance cards with you when you leave home.
  • When seeking emergency medical care, bring a 4–5-day supply of your PH medications, as they may not be available from the hospital.
  • Keep a list of numbers for your specialty pharmacy, PH doctor/clinic, and emergency contacts – see above to download the Emergency Form.
  • Hang a list of your medications, emergency contact numbers, and your PH doctor/nurse’s numbers on your fridge (it’s where emergency response teams are trained to look first).
  • Program an ICE (in case of emergency) contact number into your cell phone; this is the first thing emergency responders will look for.
  • Wear a medic alert bracelet.

Prepare for an emergency

  • Stock up on necessities, especially drinking water, food, first aid kits, flashlights, and batteries.
  • Keep a supply of extra distilled water for CPAP machines.
  • Ask your PH care team if you can get extra medication and supplies (cassettes, syringes, etc.). Some insurance companies will allow early refills for emergencies or disasters.
  • If you have a central IV line (catheter), keep cleaning and dressing supplies with you, including gloves, masks, alcohol pads, dressings, and tape.
  • Contact your specialty pharmacy if you’re running low on medication, need to change your medication shipment address, or have other therapy-access concerns.
  • If you use oxygen, ask your oxygen company to fill your tanks so you don’t run short. Also, ask about extra batteries.
  • Contact your power company about your health condition in case they can list you as a high priority in a power outage. Work with your health provider to complete/submit paperwork to ensure your power stays on in an outage.
  • Consider investing in a generator and learn how to use it. Power outages are dangerous for those on infusion medication and those who use oxygen.

Make community connections

  • If you are a member of a local support group, exchange phone numbers with the leader and other members to keep in touch during unexpected events.
  • Get to know your neighbours and others in your community and let them know you have a special condition so they can react adequately.
  • Go to your local fire department and teach EMTs about PH.
  • Sign up for local emergency alerts.

If you have a school-aged child at home with PH, the
School Resource Guide will help you navigate any potential emergencies that might take place while they are at school.