Hemophilia: Accessing emergency care

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Teens living with hemophilia can learn helpful tips on how to access care in case of an emergency.

Have you thought about where you would go in case of an emergency? You can access medical care in many ways:

  • visiting an emergency room (ER) at the nearest hospital
  • calling for an ambulance
  • calling or visiting your comprehensive care team (CCT). This is not the fastest way to access care, so only call or visit your CCT for less urgent issues, but also make sure to notify them if you are going to the ER.

Preparing and practicing what you would do in an emergency is important. It is similar to the fire-drill practice at school. You need to know how to get out of a building in case of emergency. Likewise, if you have an injury, you need to know how to get into a building with appropriate medical care. This way you can prevent excessive blood loss or prevent blood from entering areas where it causes damage.

How to prepare for an emergency

If you have a cell phone, store all your emergency contact numbers in an entry called “ICE” (In Case of Emergency). Many times, emergency personnel or hospital staff do not know who to call if a patient has a cell phone. Similar to 911, ICE is becoming a nationally recognized name. This way, anyone who picks up your phone can dial for appropriate help.

For your ICE contact, pick a person and phone number that is always accessible, like your parent’s mobile number.

Store all the CCT phone numbers in your cell phone. Include addresses and even directions. Give your friends these details too, in case for some reason you cannot communicate for yourself.

Remember that you should not use a password to protect your phone if you choose this as your method for giving your emergency contact information.

Interacting with nurses and doctors in the emergency room

When you have a new bleed and you have to access emergency services, you will likely meet new health-care professionals. Some may know a lot about hemophilia; others may not know very much. It is your job to explain your bleeding disorder and your past medical history. Know the important details and share them with anyone who is helping you.

Here are a few points to include when you meet a new doctor:

  • Who? Your name, the severity of your hemophilia, and if you have an inhibitor.
  • What? Describe how you got the injury. Did you fall, trip, or get into a fight? Be honest!
  • Where? Describe where your injury occurred. Did you fall on the grass or pavement? Where do you think you are bleeding?
  • When? How long ago did this happen? If we are talking about a head bleed you may not have time to wait. The health-care staff may run a CT scan or MRI right away to see what’s going on inside your head.
  • Why? Was it an accident? Did you get into a fight?

When interacting with health-care professionals other than your CCT, remember to:

  • Be proactive. Tell the health-care staff you have hemophilia. Explain why a bleed can be bad news for you. This is even more important if the staff is not familiar with the condition.
  • Ask for the hematologist on-call as soon as you get to the emergency room.
  • Be patient. As great as many health-care professionals are, you may be the first person with hemophilia that they have had to help.

When visiting the emergency room, make sure you bring:

  • Your health card.
  • Your factor AND supplies if you have them at home (not every hospital may have it in stock).
  • Your hemophilia treatment diary. You may take a different amount of factor or a different type of product. It’s helpful to provide a record of your past treatments and bleeds.
  • Your cell phone that contains all your emergency contacts.
  • Any other medicines you may be taking.
  • Information about your health insurance from school, your parents, or even your job.

You may also want to bring:

  • someone with you that knows about your condition
  • books, since you may be waiting a while
  • money for snacks, drinks, or parking.

Follow-up with your hemophilia team

Always follow up with your CCT. Let them know exactly what happened. They may want you to come in to make sure everything is fine or help arrange physiotherapy if you need it. They may even have some advice for you to make your next trip goes much smoother!

Last updated: March 13th 2019