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Patient story

Maria Dolores Paez Cuenca

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Maria Dolores Paez CuencaHola: Para mi la vida me dio la vuelta, deje de hacer muchas cosas no poder correr con mis hijos, ir al parque y limitarme de jugar porq cualquier actividad fisica me produce cansancio.

Hace 3 años, en una mañana al ir a trabajar tuve un desmayo al correr a coger bus, acompañado de un fuerte dolor al pecho y una terrible sensacion de no poder respirar; eso me asusto y fui al cardiologo, me sugirio realizarme varios examenes: radiografia de torax, ecografia, electrocardiograma, y algunos examenes de sangre, mi diagnostico fue rapido, el Dr me dijo: Sra ustd tiene HIPERTENSION ARTERIAL PULMONAR IDIOPATICA, ????? mi mente quedo en blanco no sabia de q se trataba pense q era algo pasajero, que pronto me pondria bien, pero no fue asi. Lamentablemente en mi pais hay mucho desconocimento sobre el tema por lo que el medico me mando a leer sobre la HAP, empece con el tratamiento pero no habia cambios, decidimos con mi esposo buscar otra opinion, y asi fueron muchas opiniones q cada ves me deprimian mas, no habian cambios, llegue a hincharme deje de comer, no podia dormir, me faltaba el aire, y hasta ese momento ningun medico me habia sugerido utilizar oxigeno, l o q me parece ilogico.

Al año de mi enfermedad conoci a dos medicos que me devolvieron la vida, se admiraban que aun este viva, en ese momento empece a utilizar oxigeno las 24 horas del dia y a tomar diureticos, anticuagulante, sildenafil, adalat oro 20, pase en casa tres meses sin poder trabajar ni salir, despues de ese tiempo me disminuyeron la cantidad de oxigeno a 15 horas diarias, y el mismo tratamiento de medicina, tambien me realice un cateterismo hace 9 meses en el que se confirmo mi diagnostico y ademas me dijo el cardiologo y neumologo q mi caso es severo. Al momento estoy estable, trabajo 4 horas al dia en la mañana, sin hacer nigun esfuerzo fisico, camino muy despacio, subo gradas pero descansando, me dedico a mis hijos en la tarde, ellos ya estan grandes el mayor tiene 15 años mi nena 13 años y el ultimo 10 hemos aprendido a vivir con mi enfermedad, mi esposo es el pilar mas importante en mi vida, el es el que cada dia me apoya para seguir luchando, como dige estamos aprendiendo a vivir. Tengo una hermosa familia que nunca me abandona estan siempre pendientes de lo q necesito. Tambien al momento estoy buscando otros pacientes en mi pais para compartir esta experiencia de vida, y luchando para que algun dia ENCONTREMOS CURA PARA LA HAP.

 

English Version

Hello: For me life turned around. I stopped doing a lot of things: I couldn't run with my children, go to the park, or play as much because any physical activity made me tired.

One morning three years ago when I was going to work I fainted while running to catch the bus. This was accompanied by a strong pain in my chest and a terrible sensation of not being able to breathe. This scared me, so I went to the cardiologist, who suggested that I do some tests: a chest x-ray, an ultrasound, an electrocardiogram, and various blood tests. My diagnosis was quick; the doctor told me, "Ma'am, you have IDIOPATHIC PULMONARY ARTERIAL HYPERTENSION." ????? My mind went blank. I didn't know what this meant. I thought it was something that would pass--that soon I would get better--but it wasn't so. Lamentably in my country there is not much known about the disease, so the doctor told me to read about PAH. I started with treatment but there were no changes, so my husband and I decided to search for another opinion. We heard a lot of opinions that were depressing me more and more each time. There were never any changes. I started to swell up, I stopped eating, I couldn't sleep, I couldn't breathe easily…and still no doctor had suggested that I use oxygen, which seems illogical to me.

The year I was diagnosed I met two doctors who gave me back my life. They were amazed I was still alive. They started me on oxygen 24 hours a day, and I took diuretics, anticoagulants, sildenafil, and adalat oro 20. I spent three months at home without being able to work or go out. After this time they lowered my oxygen to 15 hours a day, with the same medical treatment. They also gave me a catheterization 9 months ago, which confirmed my diagnosis and made my cardiologist and pulmonologist tell me that my case is severe. At the moment I am stable. I work 4 hours a day in the morning, without exerting any physical force. I walk very slowly. I do walk up stairs, although it is very tiring. I dedicate myself to my children in the afternoon. They are already big; the oldest is 15 years old, my daughter is 13 and my youngest is 10. We have learned to live with my disease. My husband is the most important pillar in my life; he is who supports me to keep on fighting every day--like I said we are learning to live. I have a precious family that never abandons me. They are always there for whatever I need. Also at the moment I am searching for other patients in my country with whom I can share this life experience, and fighting so that someday we can FIND THE CURE FOR PAH.  

 

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