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WHAT YOU NEED TO KNOW:
Hemophilia is a bleeding disorder caused by a problem in your blood's ability to form a clot. Hemophilia causes you to bleed more and longer than normal. Certain blood cells and substances normally form clots and stop you from bleeding too much. These include platelets, clotting factors, vitamin K, and fibrinogen. Platelets are a type of blood cell that helps form blood clots. Clotting factors are proteins that work with platelets to clot the blood. Hemophilia usually occurs only in men.
WHILE YOU ARE HERE:
is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.
You may need to rest in bed after a bleeding episode. Use 2 to 3 pillows to raise your upper body and head when you lie down. This may help you breathe more easily. Your caregiver will tell you when it is okay to get out of bed. Call your caregiver before you get up for the first time. If you feel weak or dizzy, sit or lie down right away and call for help.
Intake and output:
Caregivers will keep track of the amount of liquid you are getting. They also may need to know how much you are urinating. Ask how much liquid you should drink each day. Ask caregivers if they need to measure or collect your urine.
- Antifibrinolytic proteins: These keep blood clots from breaking down. They may be used to stop bleeding in your mouth, nose, or abdomen.
- Desmopressin: This helps increase the amount of clotting factors in your blood.
- Pain medicine: You may be given a prescription medicine to decrease pain. Do not wait until the pain is severe before you ask for more medicine.
- Steroid medicine: This may be given to decrease swelling in your joints or tissues.
- Blood tests: You will need to have your blood tested. The type and amount of clotting factor in your blood will be checked. Your caregiver will also test how well your clotting factors and platelets work. You will need to have blood tests more than once since clotting factors change over time.
- CT scan: This test is also called a CAT scan. An x-ray machine uses a computer to take pictures of your body. You may be given a dye before the pictures are taken to help caregivers see the pictures better. Tell the caregiver if you have ever had an allergic reaction to contrast dye.
- Joint x-ray or scan: This is a picture of the bones and tissues in your joints. It may be done to check for bleeding. You may also need x-rays of your chest, abdomen, and other body parts.
- MRI: This scan uses powerful magnets and a computer to take pictures of your organs, bones, nerves, and blood vessels. You may be given dye to help the pictures show up better. Tell the caregiver if you have ever had an allergic reaction to contrast dye. Do not enter the MRI room with anything made of metal. Metal can cause serious injury. Tell the caregiver if you have any metal in or on your body.
- Replacement therapy: Certain blood cells, called factor concentrates, help the blood to clot and the bleeding to stop. They replace the missing clotting factor in your blood. For severe hemophilia, this treatment may be scheduled for 2 or more times each week. You may also need this treatment if you have sudden bleeding. Blood cells are given through an IV. In some cases, blood cells are given through a central venous catheter, which is a tube placed in a large vein near your neck. You may also get blood cells through a port, which is a small device placed under your skin. Ask your caregiver how to care for a central venous catheter or a port. You must care for the device properly to prevent serious problems.
- Physical and occupational therapy: You may need physical therapy if your joints or muscles have been damaged from bleeding. A physical therapist will help you exercise your joints and muscles safely. Occupational therapy may also be needed. An occupational therapist teaches you skills to help with your daily activities.
- Surgery: You may need surgery such as arthroplasty to repair damage caused by bleeding into your joints.
- Your body may react badly to blood products, causing new blood cells to attack healthy cells. This can lead to allergic reactions and trouble breathing. If you have a central venous catheter or a port, you may get an infection or blood clots. You may also bleed into your lungs or chest, have an irregular heartbeat, or blood may collect around your heart.
- If hemophilia is not treated, you may bleed often, and lose too much blood. Bleeding may occur in your muscles, joints, or in your mouth. Joint bleeding causes joint pain and swelling. You may lose too much blood and develop a condition called anemia. Bleeding in your brain, abdomen, chest, neck, or throat is very serious and can be life-threatening. Heavy much blood loss can damage your body organs and be life-threatening. Talk to a caregiver if you are a woman who plans to have children, and you carry the hemophilia gene.
CARE AGREEMENT:You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.