“They Told Me To Go Home and Get My Affairs In Order,” Says Pulmonary Hypertension Patient

Submitted by Susie Alvarez

On June 30, 1992, on my drive home from work, I had a crushing pain in my chest as though someone was sitting on it. I called paramedics, who arrived and took me to Cedars Sinai hospital in Los Angeles. During the week I was there, I had several tests done every day to find out why I was so sick. I remember coming in and out of consciousness and not knowing what day or time it was.

On the morning of Saturday, July 4th 1992, the pulmonologist visited my room. He quickly sat down, and told me that they found out what was wrong with me. Pulmonary Hypertensions (PH): a fatal lung condition for which there is no cure. I was told to go home, get my affairs in order, and the best they could tell me is that I have five years to live. They sent me home with  a prescription to help me breathe but my illness would progressively get worse. Eventually I would need a lung transplant. I remember grabbing the nurse by the arm, crying all night, and the only question in my head was, WHAT IS PULMONARY HYPERTENSION AND HOW DID I GET IT??

Since that day, I’ve learned that pulmonary hypertension is a complex and often misunderstood rare disease. PH means high blood pressure in the lungs but it’s different from regular hypertension. In pulmonary hypertension, the blood vessels in the lungs become narrowed and the heart has to work harder to pump blood through them. PH is a chronic and life-changing disease that can lead to heart failure if left untreated. At the time of my diagnosis (1992), the internet and cell phones were not widely available to search for resources. I had no written information or source of support to find out more information about this medical disease that was to end my life. In 1996, I visited the Liu Center for Pulmonary Hypertension in Torrance, California. I met a cardiologist who specialized in treating PH patients. He immediately ordered a heart catheterization procedure and explained I immediately needed an IV line placed in my chest with medicine attached to a pump. In 2007, I transitioned to oral therapies which has improved my quality of life and allowed me to remain employed full time.

Since 2011, I volunteer as a support group co-leader & patient advocate with the Pulmonary Hypertension Association. At a PHA Conference in 2012, met and began dating a PH patient and co-leader who is also from California. As a long term survivor, every day is a blessing for me. The loss of close friends to this disease and the hope I bring to newly diagnosed patients who I meet keep me motivated to work towards awareness, support, and hope for a cure!