As a young adult, you may need to go to the emergency room (E.R.) by yourself for the first time in your life. It can be an anxious time while you navigate your own bleeding disorder. It is very important to stay on top of your treatment and know when a bleed is severe enough to seek emergency care. Listed below are the types of bleeds to look out for as well as what to bring with you to the E.R.
This section of Emergency Room Visits covers:
Bleeding Sites That Require Special Attention
Be Prepared for an Emergency Room (ER) Visit
Bleeding Sites That Require Special Attention
In all age groups, bleeding into the head (called intracranial hemorrhage) is the most common cause of deaths from bleeding. It may occur spontaneously or after a minor or major trauma. Headache, neck ache, sleepiness, extreme sensitivity to light, nausea, vomiting, or loss of consciousness could indicate bleeding into the head. However, there may be no symptoms at all.
Steps to take:
- Contact your HTC immediately if there is a head injury or headache. Call 911 immediately if there is a change in consciousness or vision, a seizure, or sudden projectile vomiting.
Bleeding in the throat or tongue can cause them to swell, blocking the airway and interfering with breathing. Treatment should begin immediately. This type of swelling usually occurs after an injury, but it may also be caused by some medical or dental procedures.
Steps to take:
- Call 911 immediately if breathing is difficult.
- Contact your HTC immediately if you detect bleeding in the throat or tongue.
Spinal cord bleeding is rare but serious because it can cause permanent paralysis. Signs include weakness, tingling or pain in the arms or legs, and difficulty urinating or having a bowel movement.
Steps to take:
- Call 911 immediately if you suspect spinal cord bleeding.
- Contact your HTC immediately if a leg or arm becomes weak, numb, or tingles.
Bleeding from the stomach or intestine can lead to serious complications if it is not treated. Blood in vomit, vomit that looks like coffee grounds, or black or tar-colored stools are signs that bleeding may be occurring.
Steps to take:
- Contact your HTC immediately if these symptoms are present.
- Call 911 immediately if there are large amounts of blood in the vomit or stool, the abdomen is distended or painful, the person feels weak or dizzy.
Signs of an eye bleed include pain and swelling in and around the eye; a change in vision, including double or blurred vision; and the white of the eye (called the conjunctiva) becomes reddish. Because some signs of an eye bleed may involve a change in vision, it may be impossible for a baby to tell you something is wrong.
Steps to take:
- Call your Hemophilia Treatment Center (HTC) immediately if you suspect an eye bleed.
Deep cuts or lacerations are fairly easy to see. They can occur near the surface of the skin or have deep, smooth, or jagged edges.
Steps to take:
- Call your Hemophilia Treatment Center (HTC) immediately if a deep cut or laceration occurs.
Be Prepared for an Emergency Room (ER) Visit
The Hemophilia Treatment Center (HTC) may instruct you to go to the ER. They can offer guidance for the proper steps to take, advise you where to go, and often will pave the way to make the ER visit go more smoothly by alerting the ER in advance of your arrival.
Proper planning for an emergency begins well in advance. It is recommended that a person with a bleeding disorder get a Hemophilia Emergency Care Letter from their health care provider or HTC. This letter should include:
- An explanation of the bleeding disorder
- The health care provider’s description of the type and severity of the bleeding disorder
- Possible inhibitor status
- Basic treatment guidelines
- Dosage chart for your bleeding disorder’s medication for specific injuries or types of bleeds
- Current treatment plan
- Bleeding disorder’s prescription
The letter should also include important phone numbers for the HTC. Be sure to carry proof of your insurance coverage and a contact number for your health plan.
A good idea is to know the route to the hospital before an emergency occurs. Driving at your leisure gives you the opportunity to learn the route if you have not been to the E.R. before, or to discover new landmarks and traffic patterns that have changed since your last visit.
Here are some items to bring with you to the E.R.:
- Hemophilia Emergency Care Letter from your health care provider
- Infusion supplies (if needed)
- Your bleeding disorder’s medication
- Insurance card
- Ice pack
- HTC contact information
- Chargers and other things to entertain yourself
- Snacks and drinks
- Change of clothes
What to Expect in the Emergency Room (E.R.)
When it comes to emergencies, you may have to educate the E.R. doctors, nurses, and other members of the health care team. You should bring medical literature that explains hemophilia and the emergency treatment of it to show health professionals in the E.R..
The National Bleeding Disorders Foundation’s Medical and Scientific Advisory Council (MASAC) has issued the important document, Guidelines for Emergency Department Management of Individuals with Hemophilia (Number 275), which provides a concise but comprehensive overview of hemophilia for health professionals. The guidelines instruct medical personnel on how to assess patients with hemophilia, what diagnostic tests should be performed, and how to treat emergencies.
Another MASAC document related to emergency care is MASAC Recommendations on Improved Access to Emergency Medical Care for Persons with Inherited Bleeding Disorders (Number 113).
If you would like more information about all current recommendations, please visit MASAC Guidelines
Many people with hemophilia have learned to expect the unexpected. If you must visit the ER, you should anticipate having to stay for hospitalization. This includes changing clothes and other items you may need for at least a day or two.
MASAC For You – Guidelines for Emergency Department Management of Hemophilia and Other Bleeding Disorders, provides a summary to help you navigate your child’s E.R. visit.