PH is a serious and overwhelming disease. It’s commonly misdiagnosed, because its symptoms are similar to other — less serious — lung conditions. So, when finally accurately diagnosed with pulmonary hypertension, there are some things patients should keep in mind.
Great questions! After years living with pulmonary hypertension, my questions for my doctor changed. I always asked for updates on research progress, what tests I need to complete between appointments, and why any changes are being made. I wrote more about my favorite questions here.
I always am curious about the big picture questions but I know it is easier to put the focus on the “here and now” during appointments. I try to be as honest as possible with them. if it has been difficult for me to take certain medications, if I am having hard side effects keeping me from wanting to take them, or if I am having a hard time being compliant I see if they have any suggestions. Being honest with them about being self conscious while wearing oxygen led my doctor to tell me about the super cool oxygen glasses that I have!
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