Advocate for your care. Talk to your doctor.
PAH is a progressive disease, so it's really important to have open communication with your doctor. Often, patients will accept their symptoms as part of the "new normal" of living with PAH. But there may be ways to manage these symptoms. Let your doctor and care team know how you're feeling, what's working, and what's not. Monitor even the minor changes. Advocate for your needs and take an active role in your care to ensure you are being treated in the most effective way possible. If you need moral support, bring a close friend or family member to your appointments.
I’m honest with my doctor, and I tell him how I feel. We both have to be willing to commit to a plan and do what’s right to get to a goal that we agree on.
Talk to your doctor and nurse. Have a conversation about how you’re feeling, how you’d like to feel, and see what they have to say about how you might get there.
Before your next appointment Think about some of the questions below. Sometimes it helps to jot down notes so you can remember what you want to discuss:
Are you feeling better or worse since your last appointment?
Are your symptoms improving overall with your current treatment?
Have you noticed any new symptoms? Side effects?
What activities throughout your day cause you to experience symptoms?
For more information on improving the treatment conversation with your doctor, use our Doctor Discussion Tool.