I’m Aware That I’m Rare: Lorraine Bourne (269)

The phaware® interview

Pulmonary hypertension patient Lorraine Bourne on the frustration in getting a proper PH diagnosis and the importance of connecting with other patients who share her rare disease.

I’m Lorraine Bourne and I’m a pulmonary hypertension patient.

I would say the first time I heard the words pulmonary hypertension, and in my case, pulmonary arterial hypertension, because that’s what I have, I was feeling like I was going to pass out every time I exercised. It had been going on for about two years. I went to three different doctors. I talked to my heart doctor first and he ran a few tests. He said, “Oh you’re perfectly fine. Just keep doing what you’re doing.” That was the first year. Then I went to my annual checkup and I had all my three doctors lined up within three weeks of each other.

I went to my general practitioner and she says, “Oh that’s a heart problem. So talk to your heart doctor.” I said, “I already did but I’ll talk to him again.” I talked to him again and he says, “We’re not running anymore…