I’m Aware That I’m Rare: Sarah Brackett (232)

The phaware® interview

Pulmonary hypertension patient Sarah Brackett discusses her devastating road to diagnosis, busting CTEPH through surgery and the importance of educating medical professions in rural areas to raise rare disease awareness.

My name is Sarah Brackett. I live in Manassas, Virginia. In my life, as far back as 1985, I’ve had 3 pulmonary emboluses, two of them following surgeries after a Greenfield filter was put in to prevent them. And within six months of the last one in 2004, I started getting very tired and short of breath, and I wasn’t feeling good. I had three teenagers, so I was a busy mother. I went to the doctor, a lot of doctors, for six long years trying to find out what was wrong with me. I was getting worse and worse and worse.

Clueless doctors who gave me the most ridiculous theories that “you need to lose weight”, “You need to change your vitamins.” One even told me I had pulled a muscle in my neck. I could barely walk down the stairs. I couldn’t hardly roll over in bed. Every day I was getting worse. I couldn’t do the things that I was doing. It was a really bad place to be in. I can remember not being able to sleep, because I was so filled with fluid and so short of breath. You couldn’t lay down, it made it worse.

I would try to get up at night and go to the bathroom, and I would just stand there. I knew I was dying. Something was clearly wrong with me, and I knew it. Why couldn’t anybody tell me? It wasn’t that I needed to lose weight or change my diet or take vitamins. Something was wrong and nobody’s telling me. And I’m scared, really scared. And that’s where it started.

I got so bad I couldn’t walk 10 feet across the floor. My children, who were teenagers at the time, they were crying to their father, “Do something! Do something!” And I’m going back and forth to doctors, which just going to the doctor was the biggest effort of my whole week just to get to my car and sit there for 20 minutes until my heart stopped beating out my chest so I could…