Caregiver story

Patricia Monica Rosemburg

Read the English version

Buenas tardes soy Patricia la mamá de Agustín de 14 años el tiene hp. Nació prematuro de 37 semanas de gestación pesando 1050 gms. Presentó desnutrición crónica, alteraciones neurológicas, tiene una cardiopatía congénita civ - comunicación interventricular- que no pudo ser corregida debido al desarrollo de la hp muy elevada - severa- desde los primeros dias de vida. Se le hacen controles de ecocardiograma dopplercolor, test de marcha de los 6 minutos y tiene dos cateterismos realizados.

Hace seis años toma solamente sildenafil 62mg. por día repartido en tres tomas diarias.

Se encuentra estable siendo controlado todos estos años por el cardiólogo y neumonólogo de cabecera.

Muchas gracias, saludo atentamente
mamá de Agustín


English Version

Good afternoon. I am Patricia, the mother of 14-year-old PH patient Agustín. He was born prematurely at 37 weeks gestation, weighing 1050 grams. He presented with chronic malnutrition, neurological alterations, and he had a ventricular septal defect (VSD)—a type of congenital heart defect—that couldn’t be corrected due to the development of severe, elevated PH since his first days of life. He has been given a color Doppler echocardiogram, the six minute walk, and has had two catheterizations.

For six years he has only taken 62 mg of sildenafil a day, taken in three daily doses.

He has been stable, kept under control for all these years by the cardiologist and the family pulmonologist.

Thank you very much, attentively,

Agustín’s mom

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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.