Pulmonary Hypertension Care Centers: Hope for the Future From a Patient's and Caregiver's Perspectives

In 1987, after three years of being treated aggressively for asthma and then a prolapsed mitral valve, I was finally diagnosed with primary pulmonary hypertension (PPH). I was told I would be lucky if I lived 2 years without having a heart/double lung transplant and that I didn't have much time to get my affairs in order. There were fewer than 200 patients in the United States at the time. There were no treatment centers, support groups, or even an advocacy group like the Pulmonary Hypertension Association (PHA). I struggled with the loneliness of this diagnosis and the lack of information available.