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Living with PH

Dealing With Emergency Situations

Though the ideal way of dealing with emergency situations is to avoid having them happen in the first place, this is not always possible.
Below is a list of tips from PH patients and caregivers on how to be prepared to deal with an emergency.


Download the Emergency Form here.

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Medications & Emergency Contacts

  • Know what medicines you are taking
  • Keep an information card with a list of your medications in your wallet, keep it behind your driver’s licence, list your PH doctor and nurse’s numbers on it
  • Hang a list of your medications, emergency contact numbers and your PH doc and nurse’s numbers on your fridge (it’s where emergency response teams are trained to look first)
  • ICE – program an ICE (in case of emergency) contact number into your cell phone, this is the first thing emergency responders will look for
  • Be candid with the people who care about you:
    • Make sure people around you know your condition,
    • Make sure someone who is really involved in your care can speak for you
    • Bring your caregivers to appointments and make sure they know everything there is to know
  • Make an emergency preparedness checklist
  • Check with your PH doc and ask if you can list him/her as your primary care physician on your emergency contact list

Inform of Your Condition

Have something on/with you at all times that says you have PH:

  • A medic alert bracelet
    • Sample identifier text: pulmonary arterial hypertension. DO NOT STOP PUMP. On sildenafil (no nitrates). Takes Coumadin.
    • Talk to your PH nurse about specific advice on what should be on your medic alert identifier
  • A card with a pop out USB flash drive that contains all of your medication, emergency contact, and medical history information and is accessible to anyone with a computer (available for $40 at www.911medicalid.com)
  • iPhone apps such as ICE, which put a flag on your phone (when the phone is turned on it indicates that there is emergency contact info)
  • A photo or scan of your emergency info on your phone as a ‘wallpaper’
  • Keep a piece of paper with all your info taped to your pump or in the pack
  • Carry an “ID” with your photo that explains the disease and your specific medical needs

Educate

  • Go to your local fire department and teach EMTs about PH
  • Invite EMTs to a support group meeting and provide them info to take back with them to local units
  • Stop by your local EMT unit and introduce yourself, give them info on what specifically needs to be done in an emergency
  • Ask nurses who work with specialty pharmacies to give a class on emergencies to your local EMTs
  • Get to know your neighbours and others in your community and let them know that you have a special condition so they are prepared to react adequately
  • EMTs can flag your phone number so when you call the info you have given them ahead of time will come up
  • If you are on oxygen, make sure that your local emergency responders are aware of this (fire department) as well as your local power company (you will be flagged as a priority during a power outage)

At The ER

  • Encourage contact with your PH doctor, have the medical personnel at the ER contact your doc – better yet, dial (or have your caregiver dial) the phone for them and hand it to them without an option
  • Have your doctor’s pager number
  • Remember: you have the right to demand a transfer. If you are facing difficulty tell them you will go to the director’s office
  • Ask questions, be aware, communicate with personnel

Caregivers

  • Do not leave your loved ones alone when in an ER
  • Be their advocate and get to know the staff
  • Call their PH doc on their behalf and have them  speak with ER staff
  • Know your loved one’s schedule, medications etc. keep a close eye, make sure something does not get messed up by ER staff

Be Your Own Advocate

  • Ask your doctor what hospital they have rights to (ask to be taken there)
  • Ask your doc to teach ER staff at that hospital about the disease
  • Know your medication interactions
  • Keep a notebook of any questions that may arise in the ER
  • Remember you have the right to refuse/ask questions about your care

Prepare Your Family/Friends

  • Come up with a plan of what is going to happen with your kids in case of emergency
    • Who will look after them?
    • Can you call this person any time?
    • Do you have someone as a back up in case first person is not available?
  • When an emergency arises explain it to your kids: do it in an age appropriate but honest manner – “mommy/daddy is sick and is going to the hospital, we will call you as soon as we know more”
  • Bring kids to doctor’s visits: the doctor is less scary if they know him ahead of time.
Talk to them about your disease: demystify it so they are not as scared if something happens.
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