EMERGENCY SITUATIONS

Because pulmonary hypertension is a rare disease, many hospitals, physicians, nurses and emergency medical technicians (EMTs) may not fully understand your condition. Being educated and prepared is your first line of defense in preventing emergencies and will grant you peace of mind to worry less and live more! This section will help you learn how to stay a step ahead of an emergency, and what to do if one does occur.

For additional reference, the Patient’s Survival Guide gives thorough information about dealing with emergencies.

• When Is it an Emergency?
• Creating a "Just in Case" Emergency Kit
• Keeping a Step Ahead
• Educate Your Emergency Responders

When Is It an Emergency?

Not all medical situations that take you off guard will require a trip to the hospital. If you think you might be experiencing an emergency situation it is important that you call your doctor or clinic and talk to someone as quickly as possible. Give brief and concise information, and answer all questions carefully. Based on the information you provide, the medical professional may call in a prescription, refer you to another doctor, ask you to come in to the hospital, or ask you to hang up and call 911.

Remember – the most important part of dealing with any potential emergency is timely communication of the problem.

If you are a patient on intravenous medication, and your catheter comes out/is cracked or your pump stops working, this is an immediate emergency. Call 911 and indicate that you have a life-threatening emergency.

Potential emergency situations could include:

• High or prolonged fever, especially if you have a central line catheter
• Fainting/near-fainting
• Coughing up blood
• Coughing up colored mucus
• Chest pain
• Rapid or irregular heartbeats
• Unusual (for you) shortness of breath
• Unusual (for you) fluid retention
• Dark, tarry stool (if you are on blood thinners such as Coumadin or warfarin)

Read more about emergency situations, and find out what to do when waiting for help to arrive (PDF)

 

Create a “Just in Case” PH Emergency Kit

Preparing an Emergency Kit is the best way to ensure you have your medications and medical supplies ready at a moment’s notice. A PHer’s emergency kit should include extra medications, an emergency phone list, a doctor’s note, and more. Consult with your doctor to ensure you have the items you need, and review our list of suggested items to include in your Emergency Kit (PDF).

Creating a Medic Alert Identifier for PH Patients (PDF)
Learn more about what PH patients should include when ordering Medic Alert bracelets.

 

Stay a Step Ahead of Emergencies

Stay a step ahead of an emergency by contacting your EMT/ambulance provider before you have a problem. Most emergency call centers have a system allowing them to enter patient information in advance on their computer screens, so they can advise EMTs of any special conditions while the ambulance is on the way.

Call your EMT/ambulance provider’s non-emergency phone number, which in many areas is 311. (Consult this list of Municipalities with 311 Service). You might be asked to provide your information by letter, form, or doctor referral. Share the following:

• Your diagnosis (PAH) and any other related illnesses/conditions
• A list of specialty medications you are taking, and how you infuse, inject, inhale or ingest the medicine
• Your oxygen needs, if applicable
• Instructions regarding your central line IV medication, if applicable. Explain the following:
  • You are on a life-sustaining medication with a very short half-life administered by a constant (24/7) infusion pump.
  • EMTs must not turn off or remove the pump.
  • An EMT may need to start an emergency IV line in your arm if there is a problem with your catheter or pump.
  • A delay of a couple of minutes can be the difference between life and death.
    

Ask what kind of confirmation will be provided to ensure that you are in the system (email, letter, etc.) and how often you will need to update the information. At the least, be sure to do so if you move or change your phone number, and anytime your medication changes.

Emergency 101 Flyer (PDF)
Share this with your emergency provider as a quick reference for them in case of emergency.

 

Educate Your Emergency Responders

One of the best steps you can take is to prepare for an emergency is to engage local emergency personnel in PH training. It will do wonders for your peace of mind and allow you to play an active role in spreading awareness about PH in your community.

Planning your visits

1. Call your local hospital and ask to be put in touch with emergency department staff. When you talk to your EMT/ambulance provider, ask if there are any local EMT associations or organizations in your area.
   
   
2. Explain your plan to your  PH specialist and ask whether they have any contacts in the American College of Emergency Physicians. (ACEP is not a college, but a specialty association that represents more than 19,000 emergency doctors.) Most local groups have regular meetings.
   
   
3. Once you’ve collected contacts, make calls to ask whether you could have a few minutes at an upcoming meeting to discuss the special emergency needs of pulmonary hypertension patients.

Educating your EMTs

1. If you get nervous about speaking in front of a group, involve your doctors, nurses and support group leaders. If you’re up to it, though, the message will be more powerful and memorable when delivered by you, the patient.
   
   
2. Take a few minutes to cover the basics, and leave a time at the end for questions. Describe the unique needs of PH patients during emergency situations. If you have members of your PH Support Group along, they can jump in to show EMTs how diverse PH patients can be.
   
   
3. Bring along handouts so audience members can do some additional research on their own. PHA and your specialty pharmacy representatives have plenty of materials that explain PAH, specialty drugs and therapies.

Educating Your Local Response Team (PDF)
This Pathlight article (Winter 2007) describes how patients across the country are extending awareness of PH to their local emergency personnel.

Contact the Advocacy and Awareness team at PHA if you would like assistance – email Advocacy@PHAssociation.org. We’re happy to help you expand knowledge of PH in your community in any way we can.