Monitoring Sickle Cell
Managing Your Sickle Cell
Becoming and staying active in monitoring and managing your health is important because no one knows your body better than you do. Remember that this is not a substitute for professional medical advice, diagnosis or treatment. It’s important to talk with your healthcare team about any symptoms or concerns you have. Some of the things you can do include:
- Develop a Nutrition Plan
Sickle cell anemia is associated with low calcium intake, vitamin D deficiency, and nutrient deficiency. Staying hydrated and eating a good diet is important as ever for staying healthy with sickle cell. Working with a nutritionist can help you develop a plan that works for your body.
- Reduce Stress
Life with sickle cell can be challenging. It's important to take time for yourself and focus on your own needs and emotions. Allowing yourself, even just a few minutes a day, can help you reduce stress. Reaching out for support from family members, friends, as well as getting help with day-to-day tasks can help. Mindfulness-based interventions such as yoga, meditation, and breathing exercises may help you reduce stress and anxiety, improve mood, and cope with pain.
- Visit your doctor on a regular basis
Find a doctor you trust and who is knowledgeable about sickle cell, so you feel comfortable getting checkups. Routine checkups are important: Regular testing of blood and urine samples can determine if your hemoglobin levels are normal, check for infections, and monitor your organs for damage. Your doctor may recommend other medical tests, such as brain imaging screenings studies and x-rays to check for blood clots in the brain, lung infection, and bone damage.
- Talk with your care team about next steps or follow-up appointments
Be sure to talk to your doctor about treatment options, and let them know about any symptoms or pain crises. Open communication can help you and your healthcare team develop a care plan to prevent complications.
- Write down and keep your appointments
Keeping track of your appointments and conversations with your care team can help you advocate for better support and management of symptoms.
- Maintain a list of your medications, vaccinations, and trips to the hospital
It may be helpful to keep track of what medicines work and don't work for your pain, as well as maintaining a list of current medications, vaccinations, and any emergency room visits.
- Keep a daily diary or use a diary app to track your pain and any other symptoms you may have
If you experience pain, documenting where, when, and what symptoms you have can be helpful when you talk to your healthcare team.
Ask your care team questions
Some questions you can ask:
- What complications are normal for my age group?
- What treatments are available, and which do you recommend? What side effects are common with these treatments?
- What medications are prescribed for me and why? How often should I be taking them?
- How do I know if I qualify for a hematopoietic stem cell transplant (bone marrow transplant) or if it is right for me?
- What is my baseline hemoglobin level?
Managing and Preventing Complications
What Can You Do?
Learn who makes up a sickle cell care team and how your care team can help.