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.

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/kids

  • 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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