OUR JOURNEYS

Patient story

Lillian Martinez-Jimenez 

Lillian Martinez-JimenezI was first diagnosed with primary pulmonary hypertension in 2004. The doctor who discovered my illness never told any of my family members, nor did he inform me. I received no referrals to see any specialist, nor did I get any prescriptions from him. I continued to go to the hospital emergency room every so often, each time feeling worse.

On January 1, 2008, I couldn't take it anymore. I was weak, coughing non-stop and unable to even eat. The doctor did have me hospitalized for a week under observation for what I thought was a bad case of asthma. After I was released from the hospital, I asked him about my swollen feet, belly and persistent cough in his office. His reply was, "that it will go away in time." Even though I still had a very bad cough and could barely walk more than a few feet he gave me a 'return to work' slip.

"I owe my life to the director of my school, Mrs. Lisa Camacho and her doctor, Dr. Lopez-Santiago."

Lillian Martinez-Jimenez

I worked in a small public school as a teacher. I was teaching English as a second language to five groups of 5th and 6th graders. My dad drove me to work on January 16, 2008. The director of the school took a good hard look at me, read the note and ordered me into her office. The note said nothing about my condition. She saw I could barely hold up my head. She opened her own little black book, called her personal doctor and described my condition to him. She then called my sister (who worked with me in the same school) and told her to get me to Hospital Pavia-Santurce as fast as she could. My sister asked for Dr. Lopez-Santiago.

When we arrived, the doctor had already ordered the nurses to take blood samples and a full set of x-rays of my heart and lungs. Dr. Lopez arrived a few minutes after the test results came back. He told my sister and Dad that I was just moments away from a heart attack. I had liquid in my lungs and an irregular heartbeat. I was immediately hospitalized in the intensive care unit as a cardiac patience. I owe my life to the director of my school, Mrs. Lisa Camacho and her doctor, Dr. Lopez-Santiago.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.