I recently received my first Rituxan (rituximab) infusion. Most people might think of treatment as starting when the medication enters the IV. But for me and many others, it starts long before that, with paperwork, phone calls, authorizations, appointments, and a level of persistence that we patients rarely get credit…
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…
Living with pulmonary fibrosis means living with a chronic cough that doesn’t let you forget it. I hate it. It feels like it’s slowly taking more from me than I realize. When the cough spells begin, my body becomes rigid and tight. My breathing turns short and…
Last in a series. Read part one. When the tests to determine if I would be diagnosed with pulmonary fibrosis (PF) finally gave me clarity, I thought the hardest part of my journey was behind me. In reality, the diagnosis marked the beginning of a new chapter…
First in a series. If you’ve read my previous columns, you’ll know I live with lymphocytic interstitial pneumonia (LIP), a rare interstitial lung disease. What you may not know is how uncommon it is for LIP to progress into pulmonary fibrosis (PF), and yet, I am part of…
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…
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…
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