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<div><em>(English Version/Version Ingles)</em>


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<div><em>(Spanish below/ Español Más abajo) </em>
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<div><strong><em>My story: </em></strong>


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<div>My name is Miranda Janneth, and I have been battling Pulmonary Fibrosis since the tender age of 12. An incurable rare lung disease that causes irreversible scarring in the lungs. The exact cause of my PF remains a mystery, but it is believed to be linked to my Rheumatoid Arthritis (RA) diagnosed at age 9. I also developed Dermatomyositis at 24, another autoimmune condition that is often associated with RA and PF. <strong>Together, these conditions have contributed to the aggressive progression of my PF </strong>gradually scarring and stiffening my lungs overtime. My total lung capacity as of November 2023 is at 22%. The scarring has affected the entire extent of my lungs, from the bottom up.


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<div><strong>Despite my limitations, I refused to let my condition define my life.</strong> I chose to embrace the fullness of life, marrying my soulmate, and becoming a mother against all odds. For the past 9 almost 10 years, my husband and I have cherished our unbreakable bond, and our six-year-old daughter fills our days with laughter and love. Becoming a mother was a medical miracle, a testament to the resilience of the human spirit and the extraordinary power of hope. I am determined to fight for my health and be there for my family. <strong>Every day, I cherish the moments I spend with my daughter, watching her grow and learn.</strong> I want to be there to witness her milestones, encourage her dreams, and guide her through life. But with my current lung condition, my ability to do these things is slowly fading and is a constant fear that weighs heavily on my heart.


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<div>On May 12, 2023, my pulmonologist delivered the devastating news that my lungs were rapidly deteriorating and would only last another 18 to 24 months. <strong>It’s an inexplicable burden that no words could fully capture how I felt at the time. </strong>A few days after my 28th birthday, on September 13 2023, I made the difficult and inevitable decision to undergo the process of being listed for a double lung transplant. So far, I've passed all the required tests, and I have two more medical tests scheduled for mid-December. My transplant team is highly confident that I may be listed as early as the new year starts, and the wait time may be short due to favorable factors such as my age, disease progression, and other health indicators.


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<div><strong>Although I am blessed with the unwavering support of my husband, daughter, parents, siblings, in-laws and friends</strong> the daily demands of living with PF have taken a considerable toll on my physical and emotional well-being. Due to the rapid deterioration of my lungs between May and November of this year, I was hospitalized from November 1st to 5th to expedite the process of being listed. I now rely on wearing oxygen 24/7. I have become completely dependent of my loved ones for basic tasks such as driving, showering, and dressing; just to name a few. The constant struggle to breathe has made even the simplest activity incredibly difficult to manage on my own.


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<div><strong><em>My Double Lung Transplant Journey Awaits:</em></strong>


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<div><strong>A double lung transplant won't be a “cure” but an exchange</strong> from getting rid of one disease for a strict routine of living. I am fully prepared to dedicate the lifelong care my new lungs demand. This means adjusting my lifestyle and relying on the support of my loved ones to prolong the life of these precious gifts. I am determined to keep them functioning for as long as possible, for it means more years with both my families, especially with my beloved husband and daughter.


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<div>A double lung transplant offers<strong> a beacon of hope, a chance to breathe freely and regain the strength</strong> to be the active mother my daughter deserves<strong>. </strong>I envision myself cheering her on at gymnastics or ballet, having our mommy daughter dates again, and simply enjoying the everyday moments of motherhood.


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<div>The financial burden of this transplant, however, is immense. Despite having insurance, the remaining costs associated with the transplant, anti-rejection medications, and post-operative care exceed my family's means. Unfortunately, <strong>If I cannot cover these expenses upfront, I will not receive the transplant </strong>or the lifelong medications I need to prevent my body from rejecting my new lungs.


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<div>While I understand that financial difficulties may affect everyone, even the smallest contribution would make a significant impact on my journey. Every dollar you donate will bring me closer to covering the expenses associated with my transplant and post-operative care. If you are unable to make a contribution, <strong>I wholeheartedly appreciate you taking the time to read my story </strong>and sharing it with others. Your kindness and generosity, in whatever form they take, mean the world to me. With your unwavering support, we can navigate the challenges of my lung transplant journey and enable me to continue fulfilling my roles as a loving wife, daughter, sister, friend and devoted mother.


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<div>Thank you for giving me the hope of a brighter future, where I can breathe freely and witness my daughter's journey through life. <strong><em>#LungsForMiranda</em></strong>


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<div><strong>With gratitude and hope for a new breath of life,</strong>


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<div><strong>Miranda J. Ortiz</strong>


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<div><em>(Spanish Version/Versión en español)</em>


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<div><strong><em>Mi Historia: </em></strong>


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<div>Mi nombre es Miranda Janneth y he estado luchando contra la Fibrosis Pulmonar (FP) desde la tierna edad de 12 años. Una enfermedad pulmonar poco común e incurable que causa cicatrices irreversibles en los pulmones. La causa exacta de mi Fibrosis sigue siendo un misterio, pero se cree que está relacionada con mi Artritis Reumatoide (AR) diagnosticada a los 9 años. También desarrollé Dermatomiositis a los 24, otra condicion autoinmune que a menudo se asocia con AR y FP. J<strong>untas, estas condiciones han contribuido a la progresión agresiva de FP</strong>, que gradualmente deja cicatrices y endurece mis pulmones con el tiempo. Mi capacidad pulmonar total desde Noviembre 2023 es del 22%. Las cicatrices han afectado toda la extensión de mis pulmones, de abajo hacia arriba.


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<div><strong>A pesar de mis limitaciones, me negué a permitir que mi condición definiera mi vida.</strong> Elegí abrazar la plenitud de la vida, casarme con el amor de mi vida y convertirme en madre contra todo los desafíos y probabilidades médicas. Durante los últimos 9 casi 10 años, mi esposo y yo hemos apreciado nuestro vínculo inquebrantable y nuestra hija de seis años llena nuestros días de risas y amor. Convertirme en madre fue un milagro médico, un testimonio de la resiliencia del espíritu humano y del extraordinario poder de la esperanza. Estoy decidida a luchar por mi salud y estar ahí para mi familia. <strong>Todos los días aprecio los momentos que paso con mi hija, viendo como crece y aprende.</strong> Quiero estar allí para presenciar sus hitos, alentar sus sueños y guiarla por la vida. Pero con mi condición pulmonar actual, mi capacidad para hacer estas cosas se está desvaneciendo lentamente y es un miedo constante que pesa mucho en mi corazón.


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<div>El 12 de Mayo de 2023, mi neumóloga me dio la devastadora noticia de que mis pulmones se estaban deteriorando rápidamente y solo durarán entre 18 a 24 meses. <strong>Es una carga inexplicable que ninguna palabra pueda expresar completamente cómo me sentí en ese momento.</strong> A pocos dias de cumplir 28 años, el 13 de Septiembre de 2023 tomé la difícil e inevitable decisión de someterme al proceso de inclusión en la lista para un trasplante pulmonar doble. Hasta ahora he pasado todas las pruebas requeridas y tengo dos pruebas médicas más programadas para mediados de Diciembre. Mi equipo de trasplante tiene mucha confianza en que puedo incluirme en la lista tan pronto como comience el nuevo año, y el tiempo de espera puede ser corto debido a factores favorables como mi edad, la progresión de la enfermedad y otros indicadores de salud.


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<div><strong>Aunque tengo la suerte de contar con el apoyo inquebrantable de mi marido, hija, padres, hermanos, suegros y amigos</strong> las exigencias diarias de vivir con Fibrosis Pulmonar ha afectado considerablemente mi bienestar físico y emocional. Debido al rápido deterioro de mis pulmones entre Mayo y Noviembre de este año, estuve hospitalizado del 1 al 5 de Noviembre para acelerar el proceso. Ahora dependo de usar oxígeno 24/7. Me he vuelto completamente dependiente de mis seres queridos para tareas básicas como conducir, ducharme y vestirme; Sólo para nombrar unos pocos. La lucha constante por respirar ha hecho que incluso la actividad más simple sea increíblemente difícil de realizar por mi cuenta.


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<div><strong><em>Mi Camino de Transplante Pulmonar Doble Me Espera:</em></strong>


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<div><strong>Un trasplante pulmonar doble no será una “cura”, sino un intercambio</strong> de deshacerse de una enfermedad por una estricta rutina de vida. Estoy completamente preparada para dedicar la atención de por vida que exigen mis nuevos pulmones. Esto significa ajustar mi estilo de vida y confiar en el apoyo de mis seres queridos para prolongar la vida de estos preciosos regalos. Estoy decidida a mantenerlos funcionando el mayor tiempo posible, porque a cambio me daria más años con mis familiares, especialmente con mi amado esposo y mi hija.


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<div>Un trasplante pulmonar doble me ofrece<strong> un rayo de esperanza,</strong> <strong>una oportunidad de respirar libremente y recuperar la fuerza</strong> para ser la madre activa que mi hija merece. Me imagino aplaudiendole en gimnasia o ballet, teniendo citas de mamá e hija de nuevo y simplemente disfrutando de los momentos cotidianos de la maternidad.


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<div>Sin embargo, la carga financiera de este trasplante es inmensa. A pesar de tener seguro médico, los costos restantes asociados con el trasplante, los medicamentos para prevenir rechazo de órgano y la atención postoperatoria exceden los recursos de mi familia. <strong>Lamentablemente, si no puedo cubrir estos gastos por adelantado, no recibiré el trasplante</strong> ni los medicamentos de por vida que necesito para evitar que mi cuerpo rechace mis nuevos pulmones.


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<div>Si bien entiendo que las dificultades financieras pueden afectar a todos, incluso la contribución más pequeña tendría un impacto significativo en mi trayecto. Cada dólar que pueda donar me acercará más a cubrir los gastos asociados con mi trasplante y atención postoperatoria. Si no puede hacer una contribución, <strong>le agradezco de todo corazón que se tomó el tiempo de leer mi historia </strong>y le pido que lo comparta con sus seres queridos. Su amabilidad y generosidad, en cualquier forma que adopten, significan mucho para mí. Con su apoyo inquebrantable, podemos afrontar los desafíos de mi trayecto de trasplante y permitirme continuar cumpliendo mis roles como esposa amorosa, hija, hermana, amiga y madre devota.


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<div>Gracias por darme la esperanza de un futuro mejor, donde pueda respirar libremente y presenciar el crecimiento de la vida de mi hija. <strong><em>#PulmonesParaMiranda</em></strong>


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<div><strong><em>Con gratitud y esperanza de un nuevo aliento de vida,</em></strong>


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<div><strong>Miranda J. Ortiz</strong>


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Miranda Needs a Double Lung Transplant

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Miranda Needs a Double Lung Transplant

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