a woman holding up a journal that is illuminating her while she is talking to her doctor

Helpful Tips for Your Next Doctor’s Visit

Routine healthcare is an important part of managing sickle cell disease (SCD). Regular care is usually managed by a primary care doctor or hematologist (a doctor who specializes in blood conditions). They perform routine tests and help treat complications. Make sure you find a doctor you feel comfortable sharing your symptoms and concerns with.

During your doctor’s visit, you may receive a lot of information and be asked many questions. It may be helpful to prepare ahead of time by keeping track of your symptoms and writing down questions. You can also bring a family member or friend to help support you during the appointment.

How should I prepare for my next doctor’s visit?

The best thing to do is to stay informed about your condition. Learn about common symptoms of SCD complications, possible treatments, and what research is being done. This will help you understand your doctor and ask them more detailed questions.

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Another way to prepare is to keep a journal of your symptoms. In this journal, you can record the frequency and severity of acute pain or other symptoms. Also write down what treatments you use, such as pain medicines.

Your doctor may ask you many questions related to your symptoms to determine triggers of episodes. A journal will help you remember details so you can better answer these questions. This can also help your doctor make more informed decisions about your treatment.

Also, be prepared for your doctor to order tests and procedures. This can include blood and urine tests for organ function, lung function tests, eye exams, or vaccinations.1

What questions should I ask my doctor?

Before your visit, write down any questions you have. These questions could be about your symptoms, medicines, test results, or tips for lifestyle changes. For example, some possible questions you may want to ask include:2,3

  • Why am I experiencing acute pain episodes (or other complications) more often than normal? What can I do about this?
  • Why am I experiencing some side effects from my treatment? Can we adjust the treatment plan?
  • How do I make a pain management plan?
  • Is there a better way to manage pain at home?
  • What lifestyle changes can I make to reduce my symptoms? For example, should I change my diet or avoid certain activities?
  • What are your recommendations for receiving the best care if I need to go to the ER?
  • What do the results of these blood tests mean?
  • What treatment is best for me? Should I be taking hydroxyurea or getting blood transfusions?
  • What can I do to prevent infections?
  • Should I see any specialists (for example, a pulmonologist)? Can you recommend one for me?
  • Where can I go to learn more about my specific situation?
  • Do I need any follow-up appointments?

What should I bring to the doctor’s visit?

During your visit, you may have to answer a lot of questions. Written copies of important information can help you give accurate and detailed answers. This should include:4

  • List of all medicines you take, including over-the-counter (OTC) drugs
  • Journal of symptoms and at-home treatments
  • List of questions you have

You may also receive a lot of information during your visit. It can help to bring a family member, friend, or community member to the appointment. They can help support you, advocate for you, and handle any information the doctor gives you. They can also make sure you get all of your questions answered.

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