Although pulmonary hypertension is a lung disease which effects the heart, there are many pulmonologists (doctors who specialize in lung conditions) and cardiologists (doctors who specialize in heart conditions) who do not understand PH at all. Therefore, PH patients need to see a PH specialist, a pulmonologist or cardiologist whose main or only focus in their practice is treating PH patients.

A reader asked me what my first indication of having PH was, or did my doctors find it. Well, a doctor did realize something was going on with my heart when my mom brought me for my first set of shots at a free clinic when I was a baby. The doctor told my mom to talk to my pediatrician, but that doctor didn't think anything was wrong. So, when my mom brought me for my second set of shots at the same free clinic, the same doctor told her there was something very wrong, and that I looked cyanotic (blue). My mom once again told my pediatrician, and I was scheduled to see a pediatric cardiologist at Buffalo Children's Hospital. When my parents showed up with me, there was a waiting room full of other parents and their children, but I was taken immediately before all of them because of how I looked. They did tests, including an echo and EKG. At some point they did a right heart catherization. I know they did a lung biopsy. And at 9 months old, I was diagnosed with pulmonary hypertension due to congenital heart disease. I have atrioventricular canal, with means basically that I have 2 holes in my heart. I was diagnosed in 1975.


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