A Strong and Positive Woman: Carmencita Lozada
My pulmonary hypertension (PH) journey started eleven years ago. It has been one of good and bad experiences, feeling different emotions, and learning. But the most important thing is that having PH has fulfilled its purpose of making me a strong and positive woman.
I am originally from Vega Baja, a city in north-central Puerto Rico and have been living in New York City since 2009. I enjoy visiting with family and friends, going to the movies, and helping people who need me.
In July 2007, I was admitted to the hospital for fatigue, shortness of breath, dizziness, swollen legs, and fainting and was diagnosed with advanced-stage idiopathic pulmonary hypertension. I was evaluated by several doctors on my island, including pulmonologists and cardiologists, and had started treatment with specialized and expensive medications, but didn’t show any improvement. The condition was progressing rapidly, so I was recommended to be evaluated for a lungs and heart transplant at a hospital in the United States that had a specialized PH center.
On November 11, 2008, Veterans Day, I arrived in New York City with my mom. Seven days later, I was admitted to the ICU at New York Presbyterian Hospital. After a complete evaluation that included echocardiograms, blood tests, an MRI, a CT Scan, a VQ Scan, sleep studies, and catheterizing the right side of my heart, the diagnosis of Class 4 primary idiopathic pulmonary hypertension was confirmed. I started a new medication for this rare, invisible, and incurable disease. Little by little, I began to improve and felt more able to carry out the necessary tasks in my daily life.
After finding accurate information about my disease and surviving my own personal hardships, I wanted to help other PH patients to understand, accept, deal with, and manage their PH. I began participating in different support groups throughout the city and became interested in the needs and difficulties of PH patients, especially fellow Hispanics. Language is one of the great barriers Hispanics face, so I put myself into their shoes and helped patients learn how to effectively communicate with their PH specialists, pharmacy personnel, and other health professionals. This also motivated me to take English as a second language classes.
Being bilingual has given me the opportunity to motivate, educate, and influence PH patients who would otherwise not receive help because of the language barrier. I’m able to translate conversations, pamphlets, and presentations, as well as to review educational resources that everyone who has PH should know about.
I was honored to lead the first and only Hispanic Support Group for Patients with Pulmonary Hypertension in New York, which opened the door to other interesting opportunities. At the last four Pulmonary Hypertension Association international conferences, I volunteered to help assist and translate for Spanish speakers. In 2014, I received a Tom Lantos Grant to develop an educational project about PH symptoms, causes, and diagnosis. I designed posters and tabletop displays written in Spanish to be placed in hospitals, emergency rooms, doctors’ offices, pharmacies, laboratories, and government offices to educate and raise PH awareness.
On this PH journey, I’ve had to learn to let go of people, things, events, and feelings, to struggle with different situations in my daily life, and to accept that New York City is the place where I must live although it’s so far away from my family. But, hopefully, I can motivate and inspire other patients who do not accept their fate and want to fight PH. I am pleased with the work done so far. It helps me feel better to provide support to members of the PH family, including patients, their family members, and caregivers. Every day, I feel blessed for living my life with PH.
Carmen, thank you for sharing your story! I’m so glad you found a PH drug that has worked well for you!!!!! You are doing so much to help PH patients, thank you!!!!