Talking to 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.

Track your symptoms

(even ones that may not seem to be related) and your daily activity, including the impact of PNH on your daily life. It’s important to let your doctor know what is happening physically, and also how it impacts your daily life.

Prepare a list of all the medicines you take

including over-the-counter medicines and vitamins.

Make a list of the topics you’d like to discuss

and specific questions you have, so you can reference this during your appointment.

Consider bringing someone with you

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

Be honest

Be direct and get right to your list of concerns or questions. The more information you can share, the better your doctor can help.

Ask questions

Medical terms can be complex and confusing. If you don’t understand something your doctor says or what test results mean, don’t be afraid to ask for clarification.

Take notes

Write down anything important that you may need to refer back to after your discussion.

Set goals for your day-to-day life

Consider discussing what your version of “ideal” looks like and how best to achieve it.

Talk about next steps

Create a plan for what should happen before your next appointment, including any additional tests, changes in your routine or medication, or any specialists you may need to see.

Keep track

Keep a journal or list of how changes to your routine or treatment plan are working for you, and note whether they’ve helped you to accomplish the goals you set with your doctor.

Re-evaluate

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

Keep a record of all your appointments, lab tests and agreements in one place so it can be easily shared with new doctors or specialists.