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Sickle Cell Anemia
WHAT YOU SHOULD KNOW:
- When red blood cells (RBC's) form abnormal curved shapes called sickles, it is called sickle cell anemia. These sickle-shaped red blood cells break down faster than normal cells. Sickle cell anemia is also called sickle cell disease. Sickle cell disease is genetic. This means that the disease is passed to children by their parents through the genes. Pain is the most common symptom of sickle cell disease. You may also have headaches and trouble breathing. You may get infections often, and have a fever (high body temperature), yellow skin, stomach swelling, and other signs and symptoms.
- Your blood is tested to learn if you have sickle cell disease. Urine tests, x-rays, and other tests can show if the disease is getting worse or causing other problems. Medicine, fluids, oxygen and surgery may be used to treat sickle cell disease. You may also need to talk to caregivers about your diet and activities, and make lifestyle changes. Treatment for sickle cell disease can decrease problems such as pain and trouble breathing. Lifestyle changes and treatments can help prevent a sickle cell crisis. Certain treatments can decrease your risk of having a stroke, kidney damage, and other problems.
Take your medicine as directed:
Call your primary healthcare provider if you think your medicine is not working as expected. Tell him if you are allergic to any medicine. Keep a current list of the medicines, vitamins, and herbs you take. Include the amounts, and when, how, and why you take them. Take the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency. Throw away old medicine lists.
- Pain medicine: Pain medicine will help you cope with pain. Tell caregivers what medicine has worked in the past to decrease your pain.
- Steroids: Steroid medicine may be used along with pain medicine. It may help decrease the amount of pain that you are having. It can also make the pain go away sooner.
- Anti-depressants: This medicine is used to decrease or stop symptoms of depression (deep sadness). It can also be used to help treat pain.
- Antibiotics: This medicine prevents and fights infections that are caused by germs called bacteria.
- Hydroxyurea: This is medicine that can be used to treat cancer, but also may be used to treat sickle cell disease. Hydroxyurea can help your body make red blood cells that are less likely to sickle. Using this medicine may help decrease how often you have a painful crisis. This medicine may also help prevent a stroke. Tell caregivers if you are, or think you might be pregnant before using this medicine.
- Bronchodilators: This medicine is used to help widen your airway so that you are able to breathe more easily.
- Vitamins and minerals: Caregivers may suggest that you take a vitamin called folic acid, and a mineral called zinc. Folic acid can help prevent blood vessel problems that can come with sickle cell disease. Taking zinc may decrease how often you have a sickle cell crisis.
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.
- Talk to caregivers about your pain and other signs and symptoms, such as vision changes. Your caregiver may do tests to check your eyes, bones, liver, and other body parts. If you need to have ongoing blood transfusions, schedule them with your caregiver. At all times, carry an identification card with you that says you have sickle cell disease. The card has the information that medical workers need in case there is an emergency. Ask caregivers where to get this card.
Coping with pain:
- Use medicine.
- Talk to your caregiver about what medicines to use first to treat pain, and when they should be used. For menstrual cramps (in women), or a mild headache, you may use non-steroidal anti-inflammatory medicine (NSAIDs). Acetaminophen may be used for mild pain that you do not think is caused by a sickle cell crisis. If your pain is not better using these medicines, call your caregiver.
- You may have pain medicine that has been prescribed (ordered) by your caregiver, such as narcotics. Use this medicine as your caregiver has told you to. Do not use this medicine for other reasons than to treat pain, such as to decrease your worries. Talk to your caregiver if you think that you might get addicted to the pain medicine. Know when the pain is bad enough that you need to go to the hospital.
- Get counseling.
- With sickle cell disease, you may fear that you will have a crisis. You may fear another crisis if you have already had one or more of them. You may feel like you cannot control what happens to your body. This can cause you to feel helpless and depressed. Pain that is ongoing can make you feel that it is hard to get through each day.
- Meet with a mental health caregiver regularly. Talk to him about problems with friends and family. Ask caregivers for ways to cope with feelings of sadness and worry, and for more ways to cope with your pain. Cognitive-behavior therapy may be suggested by caregivers. Ask them for more information about cognitive-behavior therapy.
- Learn hypnosis. This therapy teaches you to change your level of awareness. This means that caregivers teach you to think about something other than your pain. You make yourself open to suggestions, like feeling happy and having more energy. Hypnosis can give long-lasting relief from depression without changing your normal activities. This treatment teaches you to have better control over your body. With practice, you may learn to do self-hypnosis without a caregiver helping you. For some people, hypnosis may help prevent a sickle cell crisis.
- Take time to relax. Surround yourself with good smells and listen to your favorite music. Take a warm bath, and try to relax your body. While lying down on a bed, focus on relaxing your muscles. Start at your toes and feet, and relax those body areas. Slowly move up your body, relaxing body parts as you go. Doing these things may help decrease your pain.
- Use distraction. This is a way of focusing your attention on something other than your pain. Playing cards or games, watching TV or taking a walk are all ways to do this. Other ways are visiting with friends, painting, petting animals, and writing down your feelings.
- Try biofeedback. A biofeedback machine can help you learn when your body is tense and when it is relaxed. Learning this can also help you learn when and how to relax. Teaching your body to relax can help you feel more in control. You can also learn how to relax without using a machine. If you learn to check your own pulse, you can also learn how to slow it down. This can also slow down your breathing, and decrease your blood pressure.
Ways to help prevent a sickle cell crisis:
- Drink enough liquid: Drink at least 3 to 4 liters (about 14 to 16 eight-ounce cups) of healthy liquids every day. For most people this includes water, milk and juice. In hot weather, drink more than this amount. Talk to your caregiver if you drink alcohol, such as beer, wine, vodka, or other adult drinks.
- Get vaccinated: Vaccinations can help prevent the infections that may lead to a sickle cell crisis. You should get a flu shot every year. You may need a vaccine to protect you from a virus called hepatitis B. Ask your caregiver about other vaccinations you should have.
- Balance rest and exercise: Rest during a sickle cell crisis. Over time, increase your activity to a moderate amount. Exercise regularly, such as every day. Avoid high-impact exercise or activities, such as playing football, which may cause injury. Avoid lifting heavy weights for exercise. Talk to your caregiver about the best exercise plan for you.
- Avoid a sudden change of air pressure or lack of oxygen: Travel in airplanes with normal cabin pressure when flying. Avoid going to high altitude places, such as the mountains.
- Avoid cold places: Keep your body warm in the winter, and at a temperature that feels right for you in the summer. Avoid quickly going from a warm to a cold place. Do not go swimming in cold water.
- If you smoke, quit: It is never too late to quit smoking. Smoking can cause more trouble breathing, and damage your lungs. If you have a lung disease it is even more important to stop smoking. You will help yourself and those around you by not smoking. Ask your caregiver for more information about how to stop smoking if you are having trouble quitting. Tell caregivers if you use any street (illegal) drugs.
- Eat a healthy diet: With sickle cell disease, you may need to be sure that you get enough folic acid. This vitamin is found in vegetables and fruit. Eat at least five servings a day of leafy vegetables and fruit. Get to and stay at a healthy weight. Ask your caregiver about the best eating plan for you.
CONTACT A CAREGIVER IF:
- You have any new signs or symptoms.
- There is blood in your urine.
- You have new trouble breathing, even while resting, and are more tired than usual during the daytime.
- You are constipated (having hard, dry stools less often than usual, that are difficult to pass).
- You have diarrhea (loose, watery stools).
- Your eyesight has changed in one or both eyes.
- You are planning travel by airplane, or to a high elevation.
SEEK CARE IMMEDIATELY IF:
- You feel like you can no longer cope with your pain, or feel like killing yourself.
- You are not acting as you usually do, or you have a seizure (convulsion) or lose consciousness (pass out).
- You have a fever.
- You have stomach pain, and you feel sick and are throwing up.
- You are a male, and you have an erection that is painful and does not go away.
- You suddenly cannot see out of one or both eyes.
- You have a headache that is worse, or different from those that you have had in the past.
- You have new weakness or numbness in your arm, leg, or face.
- You have new pain in any part of your body.
- Your urine is dark in color, and you are urinating less than usual or not at all.
- You have a new cough, trouble breathing and chest pain.
- You have a new rash, itchy skin, or feel sick after starting to use a new medicine.
- You suddenly feel weak, dizzy and have trouble breathing.
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