You can take many steps to stay as healthy as possibly with sickle cell disease. One of the most important steps is to work closely with your care team. Print this checklist, and talk with your team about each recommendation on the list.
Check your hydroxyurea dose
Your team will check your blood counts (level of blood cells) from time to time to tell whether you’re taking a safe dose of hydroxyurea. If your blood counts (especially neutrophils and platelets) get too low, your team will reduce your dose. The best dose decreases your blood counts a lot but not too much. Taking the best dose can help prevent pain crises and keep you out of the hospital.
What you can do:
Take your hydroxyurea and folate every day as prescribed.
See your health care provider as often as they recommend to check your blood counts.
Keep your vaccines up to date
Because of sickle cell disease, your spleen might not work well or might have been removed. This puts you at increased risk for infection. To help protect you, we recommend getting certain vaccines.
Ask your health care provider if you need these or any other vaccines:
Influenza vaccine (flu shot) — every year
Pneumococcal polysaccharide vaccine (PPSV23 or Pneumovax) for pneumonia — 2 doses, 5 years apart
Meningococcal vaccine for meningitis — 2 doses, 2 months apart, followed by boosters every 5 years
Haemophilus influenzae type B (Hib) vaccine for meningitis — 1 dose
Tetanus booster — every 10 years
Hepatitis B vaccine — 3 doses
Get screened for complications
Sickle cell can be harming your body in ways you don’t feel yet. Screenings can check for signs now that could turn into big problems later. This gives you the chance to get care to help prevent further damage.
Ask your care team about these screenings for people with sickle cell disease:
Eye exams — every year to check for sickle cell retinopathy.
Lung function tests — to tell us if your body is getting enough oxygen. If it’s not, you could get oxygen to use at home.
A sleep study — for some people. If you have sleep apnea, your body doesn’t get enough oxygen at night, which can make sickling worse. A special device can help you get more oxygen while you sleep.
Echocardiogram (heart ultrasound) — to tell us how your heart is working and if you are getting pulmonary artery hypertension, a serious complication.
Urinalysis — to check for protein in your urine. This helps us know if your kidneys might be injured.
Ferritin — a blood test to check for a high level of iron. If you’ve had more than 10 transfusions in your life, you are at risk for iron overload, which can harm your liver.
MRI — if your ferritin is high or you have had iron overload. It shows how much iron is in your liver and whether you need a treatment called chelation to remove some iron.
Have routine wellness care
All adults need routine wellness care, like regular check-ups and tests to check for health problems before they cause symptoms.
See your health care provider as often as they recommend for routine wellness care.