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Nephrogenic Systemic Fibrosis

WHAT YOU SHOULD KNOW:

Nephrogenic systemic fibrosis (NSF) is the thickening and hardening of your skin, mostly on your arms and legs. Your muscles, joints, organs, and the tissue that covers your brain may also be affected. It is a condition normally found in people with kidney disease.

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.

RISKS:

Your symptoms may become worse. You may develop severe pain in your arms or legs. They may swell and be hard to move. Nerves, blood vessels, muscles, and organs may be damaged. Without treatment, your skin and muscles may continue to tighten, causing deformities. You may have little or no movement in your arms or legs. NSF may cause damage to your heart and lungs, and may be life-threatening.

WHILE YOU ARE HERE:

Informed consent

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.

Pain medicine:

Pain medicine may be given. Do not wait until the pain is severe before you ask for more medicine.

Tests:

  • Arterial blood gases (ABGs) is when your blood is tested for the amount of oxygen and carbon dioxide. The results can tell caregivers how well your lungs are working.

  • Blood tests may be needed to check your kidney function.

  • Imaging tests may be needed to check for organ or other damage in 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.

    • A CT scan , or CAT scan, is a type of x-ray that uses a computer to take pictures of your organs.

    • An MRI takes pictures of your organs to show damage. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell the caregiver if you have any metal in or on your body.

    • An echocardiogram is a type of ultrasound used to check for high blood pressure in your lungs and heart. It may also show damage to your heart tissue.

Treatment:

  • Physical therapy is a program where a therapist teaches you exercises to help improve movement and strength. Physical therapy can help loosen your tight skin and prevent contractures. A contracture is when your skin or muscles tighten, causing problems with how you move your joints.

  • Dialysis cleans your blood when your kidneys cannot. Extra water, chemicals, and waste products are removed from your blood by a dialyzer or dialysis machine. The dialysis machine does this by passing your blood through a filter, then returning it back to you. Ask for more information about dialysis.

  • Photopheresis is when your blood is removed and treated with ultraviolet (UV) light and medicine. Blood is then returned to your body. Ask for more information about photopheresis.

© 2014 Truven Health Analytics Inc. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or Truven Health Analytics.

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.

Learn more about Nephrogenic Systemic Fibrosis (Inpatient Care)

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