Partnering with your doctor

Share your expectations

when you schedule your appointment, and let the office know about any topics you’d like to discuss or questions you might have. That way, your doctor can get ready for the discussion, and the office can set aside enough time.

Reflect on your experiences and track your symptoms

leading up to your appointment. Take the Symptom Questionnaire to think about how you’re feeling. Share these results with your doctor to let him or her know how PNH is affecting your life.

Prepare a list of medications and topics

you’d like to discuss. Write down any over-the-counter medications and vitamins to share with your doctor and specific questions you have, so you can reference this during your appointment.

Consider bringing someone with you

(even if via phone) who can help support you, or serve as second set of ears or a notetaker. You can also ask the doctor if it’s okay to record the conversation.

Be open

when talking about your list of concerns and asking questions. The more information you can share, the better your doctor can help. If you don’t understand something, don’t be afraid to ask for clarification.

Be specific

by explaining what your ideal day-to-day experience looks like. It can also be helpful to explain how you’re feeling by using numbers. For example, “I called out of work 5 times this month” or “I felt fatigued 3 times last week.”

Set clear next steps

before leaving your doctor’s office and create a plan for what should happen next. You can plan ahead for additional tests, changes in your routine or medications, or any specialists you may need to see.

Keep track

with a journal or list of how changes to your routine or treatment plan are working for you. Note whether these changes have helped you to accomplish the goals you set with your doctor.

Re-evaluate

and be mindful of how changes in your life may need to be reflected in your treatment plan. Record any new topics or observations to discuss with your doctor at your next appointment.

Stay organized

by keeping a record of all your appointments, lab tests, and agreements in one place. This way they can be easily shared with new doctors or specialists.