{"id":9183,"date":"2024-04-24T15:47:40","date_gmt":"2024-04-24T15:47:40","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=9183"},"modified":"2025-05-05T17:03:21","modified_gmt":"2025-05-05T17:03:21","slug":"navegando-entre-las-sombras-mi-viaje-con-craneofaringioma-y-encontrando-gratitud-en-el-camino","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2024\/04\/24\/navigating-the-shadows-my-journey-with-craniopharyngioma-and-finding-gratitude-along-the-way\/","title":{"rendered":"Navegando por las sombras: Mi viaje con craneofaringioma y la b\u00fasqueda de la gratitud en el camino"},"content":{"rendered":"

Mi historia es muy amarga. Empec\u00e9 a tener pr\u00e1cticamente todos los s\u00edntomas de un craneofaringioma, pero no me diagnosticaron ni trataron hasta un a\u00f1o despu\u00e9s. La mayor\u00eda de los pacientes de craneofaringioma eran ni\u00f1os o adultos de entre 50 y 60 a\u00f1os. Yo ten\u00eda veintitantos, as\u00ed que no era posible que tuviera un tumor hipofisario.<\/p>\n\n\n\n

Por aquel entonces yo era estudiante de posgrado, pero recuerdo una noche que estaba en casa visitando a mis padres. Sobre las tres de la madrugada baj\u00e9 a por agua. Acab\u00e9 abriendo una lata grande de zumo de pi\u00f1a y me la beb\u00ed toda. Mi padre hab\u00eda bajado y me observaba. Con voz angustiada, me pregunt\u00f3: \"\u00bfQu\u00e9 est\u00e1 pasando?\". Pero yo no lo sab\u00eda.<\/p>\n\n\n\n

Un m\u00e9dico me hizo pruebas terribles, como una biopsia de h\u00edgado y la inserci\u00f3n de una burbuja de aire en la columna vertebral. Tambi\u00e9n me hizo repetir una prueba de privaci\u00f3n de agua, que es muy dif\u00edcil si tienes diabetes ins\u00edpida. No pod\u00eda quedarme sentada en la cama fantaseando con el agua, as\u00ed que sal\u00ed a dar un paseo. Cuando los resultados fueron dudosos, me acus\u00f3 de hacer trampas. Al final me diagnostic\u00f3 una enfermedad tropical y me recet\u00f3 un corticosteroide llamado prednisona. Engord\u00e9 18 kilos, la mayor\u00eda en el est\u00f3mago. Arruin\u00f3 mis posibilidades de salir con alguien.<\/p>\n\n\n\n

En alg\u00fan momento me pusieron DDAVP (acetato de desmopresina) y se acab\u00f3 la sed intensa y el orinar constante. Fue un peque\u00f1o milagro. M\u00e1s tarde me operaron y me sometieron a radioterapia. Me dijeron que hab\u00eda tenido mucha suerte, porque la idea de seguir una intervenci\u00f3n quir\u00fargica era nueva. Quiz\u00e1 por eso he vivido tanto.<\/p>\n\n\n\n

\"Mujer<\/figure>\n\n\n\n

<\/p>\n\n\n\n

Han pasado casi 40 a\u00f1os desde que enferm\u00e9 por primera vez. Durante mucho tiempo, estuve descontenta con mi obesidad causada por el Dr. Horrible, descontenta por sentirme tan aislada y no conocer a nadie m\u00e1s que tuviera mi tumor cerebral (o cualquier tumor cerebral), y tambi\u00e9n sola, muy descontenta con los m\u00e9dicos que no diagnosticaron mi tumor y luego no me pusieron un reemplazo hormonal. La negativa a ver los problemas contin\u00faa con algunos m\u00e9dicos.<\/p>\n\n\n\n

Pero al final me di cuenta de que ten\u00eda mucho que agradecer. Agradezco haber conocido a mis sobrinos y haberlos mimado mucho. Agradezco haberme hecho tan amigo de mi hermano y mis primos. Me alegro de poder permitirme vivir solo. Espero con impaciencia el desarrollo de la medidor de sodio,<\/a> para poder medir mejor mis necesidades de acetato de desmopresina. Tambi\u00e9n agradezco haber encontrado la Fundaci\u00f3n Raymond A Wood, y espero asistir a la pr\u00f3xima conferencia. <\/p>\n\n\n\n

Todav\u00eda no he podido perdonar al m\u00e9dico que me caus\u00f3 tanto dolor, pero estoy avanzando. Lentamente. Estoy deseando conocer a otras personas con tumores hipofisarios en la pr\u00f3xima conferencia de RAWF, as\u00ed como al personal y a los ponentes. Mi memoria empieza a fallar a medida que envejezco, pero sigo siendo inteligente y alegre (excepto con algunos m\u00e9dicos). <\/p>\n\n\n\n

Si desea compartir su historia, por favor rellene este formulario<\/a> o env\u00edenos un correo electr\u00f3nico a outreach@rawoodfoundation.org. <\/p>\n\n\n\n

<\/p>","protected":false},"excerpt":{"rendered":"

Mi historia es muy amarga. Empec\u00e9 a tener pr\u00e1cticamente todos los s\u00edntomas... Seguir leyendo<\/a><\/p>","protected":false},"author":4,"featured_media":9252,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[35,43],"tags":[34,51,50],"class_list":["post-9183","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-craniopharyngioma","category-patient-stories","tag-brain-tumor","tag-share-your-story","tag-survivor","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nNavigating the Shadows: My Journey with Craniopharyngioma and Finding Gratitude Along the Way - Raymond A. 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