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.