{"id":3524,"date":"2014-08-20T23:26:05","date_gmt":"2014-08-20T23:26:05","guid":{"rendered":"https:\/\/lpfch.org\/going-the-distance-clinic-prepares-team-for-a-lifetime-of-good-health\/"},"modified":"2024-09-13T18:07:07","modified_gmt":"2024-09-13T18:07:07","slug":"going-the-distance-clinic-prepares-team-for-a-lifetime-of-good-health","status":"publish","type":"post","link":"https:\/\/lpfch.org\/es\/impact-stories\/going-the-distance-clinic-prepares-team-for-a-lifetime-of-good-health\/","title":{"rendered":"Avanzando hasta el final: la cl\u00ednica prepara a su equipo para una vida de buena salud"},"content":{"rendered":"

Conoce a LaJay<\/span><\/p>\n

LaJay Phillips tiene un club de fans en la Cl\u00ednica de Transici\u00f3n de Trasplante de H\u00edgado para Adolescentes, y es f\u00e1cil entender por qu\u00e9. Con 20 a\u00f1os, LaJay es una de las historias de \u00e9xito de la cl\u00ednica y sirve de ejemplo para los adolescentes que siguen el mismo camino que \u00e9l emprendi\u00f3 hace poco.<\/p>\n

De beb\u00e9, a LaJay le diagnosticaron atresia biliar, una afecci\u00f3n cong\u00e9nita en la que el conducto biliar entre el h\u00edgado y el intestino delgado est\u00e1 obstruido o ausente. A los 2 a\u00f1os, se someti\u00f3 a un trasplante de h\u00edgado en el Packard Children's.<\/p>\n

Adem\u00e1s de lidiar con problemas de salud, LaJay se enfrent\u00f3 a m\u00e1s que su cuota de trastornos: m\u00faltiples familias de acogida, mudanzas entre Oakland, Hayward y Tracy, y la separaci\u00f3n de sus tres hermanos.<\/p>\n

A medida que crec\u00eda y experimentaba todos estos cambios, LaJay asumi\u00f3 la responsabilidad de cuidar su salud para asegurar que su cuerpo no rechazara su nuevo h\u00edgado. Mantiene un estricto r\u00e9gimen de medicamentos y visita peri\u00f3dicamente el Packard Children's para sus revisiones.<\/p>\n

Para ayudar a adolescentes como LaJay a transitar la transici\u00f3n de paciente pedi\u00e1trico a adulto independiente, Packard Children's cre\u00f3 en 2007 la Cl\u00ednica de Transici\u00f3n de Trasplante de H\u00edgado para Adolescentes, la primera cl\u00ednica de este tipo. Hoy, los adolescentes y sus familias tienen la oportunidad de reunirse seis veces al a\u00f1o para conocer las necesidades espec\u00edficas de los receptores de trasplantes.<\/p>\n

Los adolescentes ser\u00e1n adolescentes<\/h2>\n

La gran mayor\u00eda de los ni\u00f1os y adolescentes que han recibido trasplantes se adaptan bien, afirma Lauren Mikula Schneider, PsyD, instructora cl\u00ednica de psiquiatr\u00eda infantil y adolescente. Sin embargo, algunos tienen dificultades para adaptarse a los cambios que conlleva el trasplante, como sentirse diferentes de sus compa\u00f1eros, tener que tomar medicamentos con un horario estricto, los efectos secundarios de los medicamentos que alteran su apariencia f\u00edsica o las restricciones en las actividades.<\/p>\n

Para muchos receptores de trasplantes, este ya es un momento dif\u00edcil. Algunos atraviesan etapas de rebeld\u00eda y pueden saltarse sus medicamentos o citas m\u00e9dicas. Pero el equipo cl\u00ednico nunca se da por vencido. Con el tiempo, muchos pacientes tienen un momento de revelaci\u00f3n.<\/p>\n

William Berquist, MD, director m\u00e9dico del programa de trasplante de h\u00edgado pedi\u00e1trico y cofundador de la cl\u00ednica, disfruta ver a los pacientes aumentar su independencia, apoyados por su participaci\u00f3n en la Cl\u00ednica de Transici\u00f3n para Adolescentes.<\/p>\n

\u201cAlgunos adolescentes adoptan una actitud pasiva respecto a su salud, pero la cl\u00ednica los motiva a ser m\u00e1s activos\u201d, dice Berquist. \u201cComo son adolescentes y a\u00fan est\u00e1n desarroll\u00e1ndose, pueden cambiar de rumbo seg\u00fan lo que aprenden de nosotros y de los dem\u00e1s. Es gratificante ver c\u00f3mo se les enciende la bombilla cuando deciden hacerse responsables de su salud\u201d.<\/p>\n

Tras sus citas m\u00e9dicas individuales, los adolescentes se re\u00fanen en grupo con un psic\u00f3logo infantil y un becario postdoctoral para hablar sobre temas como la independencia de sus padres o la convivencia con un \u00f3rgano trasplantado. El entusiasmo de LaJay es contagioso. Participante de la cl\u00ednica desde sus inicios, rompe el hielo r\u00e1pidamente con los dem\u00e1s adolescentes, creando un ambiente propicio para el aprendizaje y el intercambio.<\/p>\n

\u201cCuando estoy en la cl\u00ednica, veo a viejos amigos, comparto conocimientos y comparto mi historia\u201d, dice LaJay. \u201cSiempre se puede aprender de los dem\u00e1s y de sus errores\u201d.<\/p>\n

Dejando el nido<\/h2>\n

Mientras los adolescentes se re\u00fanen, un grupo de padres y cuidadores se re\u00fane por separado para recibir apoyo y educaci\u00f3n sobre el proceso de transici\u00f3n. La mentora de padres, Michele Ashland, describe c\u00f3mo acaba de dejar a su hija, Miranda, en la universidad en San Luis Obispo, no sin antes asegurarse de que Miranda se pusiera en contacto con m\u00e9dicos que pudieran ayudarla a controlar su salud ahora que est\u00e1 sola.<\/p>\n

\u201cUna diferencia para la que los pacientes y sus padres deben estar preparados es la forma en que sus m\u00e9dicos se comunican con ellos\u201d, afirma Marcia Castillo, enfermera titulada, licenciada en enfermer\u00eda, CCTC, coordinadora de trasplantes de h\u00edgado pedi\u00e1tricos, quien cofund\u00f3 la cl\u00ednica con Berquist. \u201cMientras los ni\u00f1os reciben tratamiento pedi\u00e1trico, los m\u00e9dicos se comunican con los pacientes y sus padres como una familia. Cuando los pacientes pasan a la medicina para adultos, son tratados como individuos plenamente responsables de su propio cuidado\u201d.<\/p>\n

Desde que comenz\u00f3 la cl\u00ednica, los organizadores dicen que han visto una mejora en la adherencia de los pacientes a la medicaci\u00f3n, menos complicaciones y rechazos a largo plazo y una mayor conciencia de s\u00ed mismos con respecto a cuestiones como las drogas, la imagen corporal y las relaciones.<\/p>\n

\u201cHemos aprendido que cuanto antes comiencen los adolescentes a prepararse para esa transici\u00f3n, m\u00e1s \u00e9xito tendr\u00e1n cuando llegue el momento de pasar a la medicina para adultos\u201d, afirma Castillo.<\/p>\n

Schneider agrega que una encuesta preliminar realizada a los adolescentes muestra que el 62 por ciento de ellos actualmente gestionan sus medicamentos y citas sin la ayuda de un padre.<\/p>\n

\u201cNuestro objetivo es aumentar esa cifra y animar a los adolescentes a ser m\u00e1s independientes en la gesti\u00f3n de su atenci\u00f3n m\u00e9dica\u201d, dice Schneider. \u201cEspero que en la Cl\u00ednica para Adolescentes, los pacientes encuentren estrategias que les ayuden a encontrar un equilibrio entre el cuidado de su salud y la libertad de salir y disfrutar de la vida\u201d.<\/p>\n

Este septiembre marc\u00f3 la \u201cgraduaci\u00f3n\u201d de LaJay de la Cl\u00ednica para Adolescentes mientras pasa a la cl\u00ednica de trasplantes de adultos de Stanford.<\/p>\n

Comparte con el equipo su sue\u00f1o de estudiar bienes ra\u00edces. Su club de fans, compuesto por m\u00e9dicos y enfermeras, le desea lo mejor y le env\u00eda un mensaje de despedida: "\u00a1Sigue estudiando!".<\/p>\n

Este art\u00edculo apareci\u00f3 en la publicaci\u00f3n Lucile Packard Children's News en el oto\u00f1o de 2013.<\/em><\/p>","protected":false},"excerpt":{"rendered":"

Conoce a LaJay. LaJay Phillips tiene un club de fans en la Cl\u00ednica de Transici\u00f3n de Trasplante de H\u00edgado para Adolescentes, y es f\u00e1cil entender por qu\u00e9. Ahora, con 20 a\u00f1os,\u2026<\/p>","protected":false},"author":17,"featured_media":3525,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[148],"class_list":["post-3524","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-in-the-news","health_topic-nephrology","health_topic-transplant"],"acf":[],"yoast_head":"\nGoing the Distance: Clinic Prepares Team for a Lifetime of Good Health - Lucile Packard Foundation for Children's Health<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lpfch.org\/es\/impact-stories\/going-the-distance-clinic-prepares-team-for-a-lifetime-of-good-health\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Going the Distance: Clinic Prepares Team for a Lifetime of Good Health\" \/>\n<meta property=\"og:description\" content=\"Meet LaJay LaJay Phillips has a fan club at the Teen Liver Transplant Transitioning Clinic, and it\u2019s easy to see why. 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