In 1975, when I was diagnosed with pulmonary hypertension, there weren't any treatments available. Twenty years later in 1995, the first FDA-approved treatment became available in the form of a continuous IV med called Flolan. It is still considered the gold standard of treatment for PH, especially for patients who are very ill. Today, there are now 8 FDA-approved treatments for the symptoms of PH. There is still no cure.
Survivor's Guilt
The moment I was born, I was a sick baby, even though doctors couldn't figure that out until I was 9 months old. I don't know what it's like to be totally healthy. I spent the first 28 years of my life knowing I had 2 holes in my heart, and pulmonary hypertension (PH), although no one really explained that second half to my parents or myself. Then when my daily symptoms of shortness of breath, and extreme fatigue turned into an elephant sitting on my chest constantly, I was eventually introduced to the PH world. I started seeing doctors at the Cleveland Clinic in Ohio who specialized in the disease, plus a cardiologist for adults living with a congenital heart defect. I was eventually started on a PH medication, and that first shipment of medication almost 16 years ago led me to the online world of a PH community. From message boards to chat rooms, I suddenly realized that I WAS NOT ALONE!! The PH world became MY world for so long. I would read messages for hours, replying ...
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