WHAT YOU SHOULD KNOW:
Marfan syndrome is a disorder that weakens the connective tissue in your body. Connective tissue gives strength and support to tendons, ligaments, blood vessels, and other parts of your body. Marfan syndrome may keep many of these parts of your body from being as strong as they should be. This can cause problems in your eyes, heart, blood vessels, and bones.
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.
- You may bleed more than expected during surgery, or develop an infection. Without treatment, your signs and symptoms may worsen and new ones may appear. You may have vision problems, glaucoma, and retinal detachment. Retinal detachment is a serious condition in which the retina (a layer of tissue) pulls away from the blood vessels in the eye. This problem could lead to blindness if left untreated. You may develop lung problems, such as a collapsed lung. This condition causes chest pain and shortness of breath.
- Your heart valves may become weak, which affects the blood flow in your heart. Your heart may not beat correctly. The walls of your aorta may also become weak and widen, which can lead to a tear, leak, or aneurysm. An aneurysm is a bulging of the aorta that can burst and cause bleeding inside your body. These problems may be life-threatening.
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.
is a small tube placed in your vein that is used to give you medicine or liquids.
Caregivers will check your blood pressure, heart rate, breathing rate, and temperature. They will also ask about your pain. These vital signs give caregivers information about your current health.
- Beta-blockers: These help your heart beat softer and slower. This may prevent damage to your heart and aorta.
- Blood tests: You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.
- CT angiography: An x-ray machine uses a computer to take pictures of your blood vessels. You may be given dye to help the blood vessels show up better in the pictures. Tell the caregiver if you have ever had an allergic reaction to contrast dye.
- An echocardiogram is a type of ultrasound. Sound waves are used to show the structure and function of your heart.
- Telemetry is continuous monitoring of your heart rhythm. Sticky pads placed on your skin connect to an EKG machine that records your heart rhythm.
- Eye exam: This test uses instruments to look at the inside of your eyes. Devices and lenses may be used to look for eye problems, such as glaucoma or cataracts.
- MRI: This scan uses powerful magnets and a computer to take pictures of your body. An MRI may show problems in your bones or heart. 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.
- X-ray: These are pictures of your bones, abdomen, chest, and tissues. These pictures may show problems caused by Marfan syndrome.
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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.