Educate Your Emergency Responders

First responders (EMTs)

Pulmonary hypertension and PH-specific treatments are complex and rare, so they may be unfamiliar to your local emergency medical technicians (EMTs). That's why it's so important to be proactive about sharing information and resources with your local emergency response teams — so they have all the information they need in the event of a PH-related emergency.

Train Emergency Personnel in Advance

Because of the complexity of administering some PH medications, specialty pharmacies recommend that patients reach out to local emergency personnel and alert them to your special needs prior to an emergency situation. According to one PH Support Group leader, "EMTs are our life-line. We have a very specialized disease that's not common and any information that we can make available in advance to those treating us is going to make the outcome much brighter." Here are a few suggestions to get started:

  • Put yourself on your EMT's radar. Call your EMT or ambulance provider’s non-emergency phone number, which in many areas is 311. Ask your EMT to tag your number in their system so that if you ever call 911, they'll be automatically alerted that you have special needs. Share information about PH, any associated conditions, your medications, oxygen needs, and specific instructions regarding your central line IV medication, if applicable.
  • Request check-ins during blackouts or inclement weather. Ask your EMT to put you on the BOLO, or "Be on the lookout" list, which is a list of people who should be the first to receive attention, a check-in, electricity or specific needs in the event of a blackout, inclement weather or disaster.
  • Introduce yourself to the local fire department. Let them know if you are on special medical treatments or life sustaining oxygen, and whether you have liquid oxygen in your home.
  • Speak at a local EMT meeting. Contact your local EMT association to ask for a few minutes at an upcoming meeting to discuss the special emergency needs of pulmonary hypertension patients. If you're not comfortable doing your own training, contact your specialty pharmacy to organize and conduct the training for you. Bring handouts so audience members can do some additional research on their own. PHA and your specialty pharmacy can provide you with materials that explain PH and PH medications. Order free materials

Educate EMTs in Emergency Situations

You and your caregiver should both be prepared to educate EMTs and advocate for your special needs on the spot in the event of an emergency. Talk to your PH doctor about what details you need to convey to emergency personnel given your condition(s) and treatment plan. Here are some general guidelines:

  • Keep critical health information on your refrigerator. Take advantage of stickers you can put on your window that alert EMTs to your condition and direct them to an "EMT file" detailing your specific needs, which you can keep on your refrigerator. PHA provides a free, magnetic brochure for this purpose. It includes critical information about the emergency care of PH patients and can be customized with patients' individual information. Order this brochure
  • If you are on IV medication, be prepared to provide detailed instructions. Alert the EMTs of your condition. If your catheter is leaking or has fallen out, advise them that they must start an IV in your arm. If they are reluctant to place the IV, remind them that this is a life-sustaining medication with a half-life of just a few minutes. Show them the warning sticker on the pump and offer to sign a waiver of responsibility if they need one to start the IV. You can also call the emergency number on the pump. Do not take "no" for an answer. When the IV line is in place, screw the pump tubing directly to the IV. (You or your caregiver may need to do this if the emergency personnel refuse or decline to do so.) Make sure the pump is running.
  • If you are on IV medication, be prepared to enforce the following emergency guidelines:
                • DO NOT turn off the pump or allow the emergency personnel to turn off the pump. It could be fatal. 
                • DO NOT prime the IV line or allow emergency personnel to prime the line. A bolus of medicine (too much) is as dangerous as too little and can be fatal.
                • DO NOT switch pumps or allow emergency personnel to switch pumps. The calibration (infusion rate) is not correct on a "standard" pump.
                • DO NOT allow emergency personnel to take a blood draw from the IV. Your medicine must be continuously infused.
  • Ask emergency personnel to notify your PH doctor. Once you get to the hospital, have the ER physician call your PH doctor or clinic and ask how they should proceed.

 Resources for Emergency Personnel

  

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.