Over the holidays, for the first time in a long while, my home was full of voices, laughter, movement, and the comfort of family. I hosted the gathering, something I hadn’t been able to do in years. For someone like me living with pulmonary fibrosis, hosting a holiday party…
Modern Day Mutant
— Ann Reynoso
Ann Reynoso lives in Alvin, Texas, working and volunteering as a patient advocate for those with disabilities and communities that struggle with inequalities in health and social care. She was diagnosed at age 53 on December 2019 with lymphocytic interstitial pneumonia and pulmonary fibrosis. Her wonderful support team includes her husband and daughter. She writes both to regain a sense of achievement, post-diagnosis, and to make sure no one feels alone in their journey of navigating rare illness.
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I recently underwent a bronchoscopy and bronchoalveolar lavage. While I was confident that I was under the care of competent professionals and trusted that the procedure would be conducted efficiently, I experienced a brief moment of apprehension and unease just before it. A bronchoscopy allows doctors to view your airways…
There are moments in life when love challenges us to rise in unexpected ways, testing our resilience and adaptability while revealing the quiet strengths we didn’t know we had. I am currently experiencing one of those moments. As I prepare for a lung transplant and navigate the unpredictable journey of…
I’m at it again; I’m job hunting, or seeking employment, if you will. But this time, the search carries more weight. It’s not just about finding work; it’s about reclaiming a part of myself that I thought I’d lost. Teaching has always been my passion, the steady flame that keeps…
When your lungs betray you, your voice becomes your strongest tool. That’s what it means to live and speak through pulmonary fibrosis (PF). Living with PF or another rare disease involves managing various challenges that can affect time, emotional well-being, and physical health. The countless doctor appointments, procedures,…
Weight loss is a recurring topic during my medical appointments, and I frequently discuss it with my transplant team. I wrote about this a couple years ago in a column titled “Using Ozempic in hopes of qualifying for a lung transplant.” At appointments, my body mass index is…
Living with a rare lung disease such as pulmonary fibrosis (PF) is a daily battle that requires strength and perseverance. Many individuals, me included, face this journey with courage, often in the shadows of more commonly known illnesses. Preparing for a lung transplant is undeniably tough as well,…
Living with pulmonary fibrosis is already a daunting challenge, but when coupled with a sleep disorder like sleep apnea, the burden becomes even heavier. Sleep apnea, a condition in which breathing repeatedly stops and starts during sleep, can significantly impact both sleep quality and overall health. For…
Living in Texas means facing an unpredictable climate. One minute, the skies are blue and it’s sunny, and the next, thunderstorms and tornadoes are rolling in without warning. I’ve lived in Texas all my life and still can’t keep up with the changes. Having pulmonary fibrosis (PF) doesn’t make…
Having the support of a loved one is a crucial aspect of the journey with chronic illness. Not having that support can make one feel alone and vulnerable. Conversely, the presence of a supportive partner, family member, or friend can help a patient build the emotional strength that is needed…
“Who is this woman?” I wonder as I look at a recent photo of myself. I hardly recognize the person looking back at me. Her face has changed. I haven’t looked at myself in the mirror lately. I’ve been too self-conscious. What happened to that vibrant and bright young lady…
Music has always played a significant role in my life. From childhood choir performances to playing the trumpet in school bands, melodies have been a constant source of joy, solace, and self-expression. Despite the challenges posed by my pulmonary fibrosis (PF), music remains a trusty companion, offering a therapeutic…
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