Sickle Cell Disease: Care Instructions

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Your Care Instructions

Sickled and normal red blood cells

Sickle cell disease turns normal, round red blood cells into misshaped cells that look like sickles or crescent moons. The sickle-shaped cells can get stuck in blood vessels, blocking blood flow and causing severe pain. The sickle-shaped cells also can harm organs, muscles, and bones. It is a lifelong condition. Sickle cell disease is passed down in families. You can talk to your doctor about whether to have genetic tests to find out the chance of having a child with the disease. Your doctor also may recommend that your family members get tested for sickle cell disease.

Your doctor may treat you with medicines. Some people get blood transfusions or a bone marrow transplant. Managing pain is an important part of your treatment.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Take your medicines exactly as prescribed. Call your doctor or nurse call line if you think you are having a problem with your medicine.
  • Take pain medicines exactly as directed.
    • If the doctor gave you a prescription medicine for pain, take it as prescribed.
    • If you are not taking a prescription pain medicine, ask your doctor if you can take an over-the-counter medicine.
  • Try to help ease pain by distracting yourself. Use guided imagery, deep breathing, and relaxation exercises. A pain specialist can teach you pain management skills.
  • Avoid alcohol. It can make you dehydrated.
  • Dress warmly in cold weather. The cold and windy weather can lead to severe pain.
  • Do not smoke. Smoking can reduce the amount of oxygen in your blood. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.
  • Get plenty of sleep.
  • Get regular eye examinations. Sickle cell disease can cause vision problems.
  • Wear medical alert jewellery that says that you have sickle cell disease.
  • Avoid colds and flu. Get a pneumococcal vaccine shot. If you have had one before, ask your doctor whether you need a second dose. Get a flu shot every fall. If you must be around people with colds or flu, wash your hands often.

When should you call for help?

Call 911 anytime you think you may need emergency care. For example, call if:

  • You passed out (lost consciousness).
  • You are in severe pain that is not helped by your pain medicines.

Call your doctor or nurse call line now or seek immediate medical care if:

  • You have these signs of acute chest syndrome, a problem caused by sickle cell disease:
    • Cough.
    • Chest pain.
    • Fever.
    • Shortness of breath.
  • You have vision problems.
  • You have severe belly pain.
  • You have a severe headache.
  • You have less urine than normal or no urine.
  • You have vomiting or diarrhea that does not go away after 2 hours.
  • You are dizzy or light-headed, or you feel like you may faint.
  • You have sudden numbness or tingling in your hands, feet, fingers, or toes (even if it goes away).
  • You suddenly have poor balance and coordination when you walk (even if it goes away).
  • You have an erection that lasts more than 2 to 3 hours or is extremely painful.

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if you have any problems.

Where can you learn more?

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Current as of: October 13, 2016