Talking to your doctor
Talking to 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.
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 direct and get right to your list of concerns or questions. The more information you can share, the better your doctor can help.
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.
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 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.
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.
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.
“I wish I’d asked my doctor about disease progression – will my PNH become worse over time?”
– Person with PNH
“I wish I’d asked my doctor how I was supposed to feel – what does ‘normal’ feel like with PNH?”
– Jason, living with PNH
“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
“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
“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