Flolan, or epoprostenol, was the first FDA approved medicine to treat symptoms of PH. It is a continuous IV through a permanent catheter placed in one of the large veins of the heart. A pump is used to deliver the med into the system. Flolan works by dilating the blood vessels and helping the right side of the heart pump more blood through the lungs. The cost of Flolan is at least $100k per year, sometimes higher depending on patient dosing.
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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