Treatment Options ER Checklist
If you are a hemophilia patient, the following checklist can help you make sure you receive the best emergency hemophilia treatment:
- Call your hemophilia treatment center or your physician. They can contact your ER to let them know that you are a hemophilia patient and that you are on your way.
- Know your specific hemophilia diagnosis and hemophilia treatment plan. Have your exact diagnosis firmly in your mind or, better yet, written out.
- Be prepared to answer detailed questions about the bleed. How did it start? How was it treated? When was it treated?
Hemophilia Facts: What To Bring To The ER
For the individual with hemophilia, or the person caring for someone with a hemophilia diagnosis, here are a few items you'll want to make sure you bring to the ER:1
- Clotting factor and infusion supplies (check with your ER to make sure they will allow you to bring these items).
- An ice pack so you can begin icing and elevating the bleeding joint or muscle on the way to the ER and continue once you arrive.
- A letter or wallet card from your physician that outlines your hemophilia treatment regimen, including dosage, so that necessary treatment can be administered without delay. Make sure the letter includes your physician's name and number in case the ER physician needs more information regarding your hemophilia diagnosis.2
- The phone numbers of your hematologist, pediatrician, and treatment center.
- Snacks, books, music and your favorite blanket or pillow.
- Your knowledge of hemophilia facts. Don't expect ER personnel to be experts on bleeding disorders or the symptoms of hemophilia. Know enough about your hemophilia diagnosis and its treatment to be able to explain it to personnel.
Emergency Hemophilia Treatment: At the ERDealing with an emergency can be overwhelming. But these tips can help people with hemophilia and their loved ones be clear with the ER staff about the medical situation and specific needs.
- Be specific with the triage nurse. Describe your bleed in specific and precise terms. Don't downplay the situation.
- Factor first. Remind the ER nurse that the first thing you need is factor, not a CAT scan or an x-ray.3
- Don't throw out the factor! Vials of factor don't always match up exactly with the dosage calculated, and the ER nurse's first instinct may be to toss out the leftover factor. Instead, remind the ER staff that leftover factor should be infused.3
- Make yourself comfortable. Bring along your favorite blanket or pillow. Work with the ER staff to help them help you to relax during treatments.
- Be prepared for questions about bruises. If questions sound threatening, stay calm and remind staff matter-of-factly that bruising is common among people diagnosed with hemophilia.
- Be patient but persistent. If you have not received treatment after a reasonable amount of time, contact your hemophilia treatment center or your primary care physician.
- Stay informed and in charge. Be careful about consenting to invasive procedures unless you fully understand them, are sure of their necessity, and pre-treat ahead of time. This includes unnecessary blood testing.3
- Always treat ER personnel with the respect and dignity you want for yourself. Your calmness and tolerance lays the groundwork for a positive collaboration with the ER staff.
Hemophilia Support: If Things Go Wrong
As someone with a hemophilia diagnosis, be prepared for not every ER visit to go smoothly. If you experienced problems during your visit, set up an appointment with the ER director to discuss what went wrong. By explaining your concerns clearly and calmly to the ER director, you can help the staff be better prepared to treat your symptoms of hemophilia next time.
Note: ThereForYou.com does not recommend a particular treatment for specific individuals and recommends that you consult your treatment center or physician before pursuing any course of treatment.
- The Emergency Room: Prepare To Succeed. Canadian Hemophilia Society website. http://www.hemophilia.ca/files/er2.pdf. Accessed June 8, 2011.
- Paper, Renee. Like mixing oil and water? Women with bleeding disorders in emergency departments. Hemophilia Today, 2001 ; Vol 36; № 1
- MASAC Recommendation #175: Guidelines For Emergency Department Management Of Individuals With Hemophilia. National Hemophilia Foundation website. http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=57&contentid=691. Accessed June 8, 2011.