Partnering with your doctor
Partnering with your doctor
Partnering with your doctor
Every appointment with your doctor is an opportunity to take steps toward better health. Planning can help you get the most out of these conversations.
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.
Consider the impact of your symptoms
on your life. This wellness tool can help you identify how PNH symptoms are affecting your life so you can work with your friends/family/doctor to prioritize what’s most important to you.
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.
Bring someone with you
who can help support you, or serve as a second set of ears or a notetaker (even if via phone). 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.” This is where the results of the wellness tool can also come in handy!
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, including how symptoms are impacting your activities.
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.
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“I wish I’d asked my doctor about disease progression – will my PNH become worse over time?”
– Person with PNH
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“I wish I’d asked my doctor how I was supposed to feel – what does ‘normal’ feel like with PNH?”
– Jason, living with PNH
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“I wish I’d asked my doctor about how the whole unit can cope with PNH, as PNH doesn’t just impact me, it affects my entire family. We’re on this journey together and need support every step of the way.”
– Alyce, living with PNH
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“I wish I’d asked my doctor about her thoughts on caring for me post-diagnosis and whether I should add more specialists to my care team.”
– Tony, living with PNH
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“I wish I'd asked my doctor how to best cope with fatigue while still fulfilling the responsibilities I have in my life. Are there any tips for managing fatigue on a daily basis?”
– Leslie, living with PNH