{"id":26255,"date":"2024-03-14T14:38:18","date_gmt":"2024-03-14T18:38:18","guid":{"rendered":"https:\/\/nephcure.org\/?post_type=patient-story&p=26255"},"modified":"2026-08-19T10:48:44","modified_gmt":"2026-08-19T14:48:44","slug":"macy-h","status":"publish","type":"patient-story","link":"https:\/\/nephcure.org\/es\/patient-story\/macy-h\/","title":{"rendered":"Macy H."},"content":{"rendered":"

A Macy le diagnosticaron s\u00edndrome nefr\u00f3tico a la edad de tres a\u00f1os en 2009, cuando present\u00f3 p\u00e1rpados hinchados. Inicialmente, le diagnosticaron err\u00f3neamente alergias, pero finalmente la hinchaz\u00f3n se extendi\u00f3 desde el ojo hasta el abdomen, las piernas y los pies. Macy respondi\u00f3 a los esteroides muy r\u00e1pidamente y la enviaron a casa con la suposici\u00f3n de que podr\u00eda recaer una o dos veces, pero que eventualmente superar\u00eda su condici\u00f3n. Desafortunadamente, a medida que pasaron los meses, Macy se volvi\u00f3 dependiente de los esteroides y recay\u00f3 cinco veces durante los primeros seis meses de tratamiento. Despu\u00e9s de haber ganado m\u00e1s de 30 libras y de no poder dejar de tomar esteroides o incluso menos de 30 mg, la prednisona se volvi\u00f3 t\u00f3xica para su cuerpo. Ten\u00eda \u00falceras en el est\u00f3mago y no pod\u00eda caminar sin ayuda. Una biopsia indic\u00f3 que Macy ten\u00eda glomeruloesclerosis focal y segmentaria (FSGS), que hab\u00eda causado cicatrices en las unidades de filtrado de sus ri\u00f1ones.<\/p>\n\n\n\n

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Macy prob\u00f3 todos los medicamentos disponibles para tratar su enfermedad, incluido un ensayo cl\u00ednico, pero ninguno pudo detener la progresi\u00f3n de su enfermedad. Su proteinuria era tan grave que tuvo que depender de infusiones diarias de alb\u00famina durante seis horas para mantener la inflamaci\u00f3n bajo control y evitar que tuviera que ir al hospital. Durante este tiempo, sufri\u00f3 innumerables complicaciones, entre ellas sepsis y un co\u00e1gulo de sangre en la aur\u00edcula derecha de su coraz\u00f3n. Sus ri\u00f1ones se deterioraron r\u00e1pidamente y fue sometida a di\u00e1lisis peritoneal apenas 20 meses despu\u00e9s del diagn\u00f3stico.<\/p>\n\n\n

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Despu\u00e9s de nueve meses de plasmaf\u00e9resis tres veces por semana, Rituximab que provoc\u00f3 una neutropenia prolongada, un cambio de medicaci\u00f3n a Sirolimus puso a Macy en remisi\u00f3n parcial. Fue tratada por un rechazo leve un a\u00f1o despu\u00e9s del trasplante y las altas dosis de esteroides la llevaron a una remisi\u00f3n completa, donde permanece hoy.<\/h2>\n<\/blockquote>\n\n<\/div>\n\n
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Despu\u00e9s de una nefrectom\u00eda bilateral, Macy recibi\u00f3 un trasplante de ri\u00f1\u00f3n de donante vivo a la edad de cinco a\u00f1os. Desafortunadamente, la FSGS regres\u00f3 y atac\u00f3 su ri\u00f1\u00f3n trasplantado y sufri\u00f3 un retraso en la funci\u00f3n del injerto. Fue una larga recuperaci\u00f3n de seis semanas, pero finalmente pudo regresar a casa para continuar el tratamiento de la FSGS. Despu\u00e9s de nueve meses de plasmaf\u00e9resis tres veces por semana, Rituximab que provoc\u00f3 una neutropenia prolongada, un cambio de medicaci\u00f3n a Sirolimus puso a Macy en remisi\u00f3n parcial. Fue tratada por un rechazo leve un a\u00f1o despu\u00e9s del trasplante y las altas dosis de esteroides la llevaron a una remisi\u00f3n completa, donde permanece hoy.<\/p>\n\n\n\n

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Transplant, however, is not a cure. Over the past 13 years, Macy has had 39 surgeries and procedures, hundreds of hospital stays, and she suffers from many comorbidities including frequent kidney infections, adrenal insufficiency from all the steroid use, and a movement disorder called chorea to name a few. Amid these challenges, her family sought ways to maintain some normalcy, with her uncle channeling his tech savvy into freelance app development for betting sites without Gamstop in the UK<\/a>, projects that provided flexible work around hospital visits and infused a sense of progress into their routine. Macy is now 17 years old and this June, she will celebrate her 12th kidney anniversary and 11 years of remission. It has been a long road and her kidney transplant is winding down, yet those adaptive pursuits have helped sustain their resilience along the way. She has a new living donor ready and waiting to give her another healthy kidney in the near future.<\/p>","protected":false},"excerpt":{"rendered":"

Macy Helm fue diagnosticada a la edad de tres a\u00f1os con s\u00edndrome nefr\u00f3tico en 2009, cuando present\u00f3 p\u00e1rpados hinchados...<\/p>","protected":false},"featured_media":26256,"template":"","age-group":[279],"disease-category":[253],"class_list":["post-26255","patient-story","type-patient-story","status-publish","has-post-thumbnail","hentry","age-group-children","disease-category-focal-segmental-glomerulosclerosis-fsgs"],"acf":[],"yoast_head":"\nMacy H. | NephCure Patient Story: Rare Kidney Disease 2026<\/title>\n<meta name=\"description\" content=\"Macy Helm was diagnosed at the age of three with Nephrotic Syndrome in 2009, when she presented with swollen eyelids... - Read more about Macy H. on NephCure.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/nephcure.org\/es\/historia-del-paciente\/macy-h\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Macy H.\" \/>\n<meta property=\"og:description\" content=\"Macy Helm was diagnosed at the age of three with Nephrotic Syndrome in 2009, when she presented with swollen eyelids... - 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