Living with a chronic illness feels like being caught in a revolving door of doctor appointments and surprise trips to the emergency room. Trust me, I’ve been caught there more times than I can count, all thanks to pulmonary hypertension (PH). But amid the challenges, I’ve gained invaluable…
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Over the years, the holidays have held many different meanings for me. While I’ve felt an abundance of joy and tradition associated with these celebrations, my lifelong battle with pulmonary hypertension (PH) and other conditions has added some complicated layers to the equation. Growing up, I had many years…
When we face setbacks from illness, it’s easy to feel like the world is crumbling around us, as if we’ve failed and there’s no point trying anymore. But here’s the thing: We can’t let those thoughts consume us. It’s easier said than done, right? Trust me, I’ve been through…
H.O.P.E.: Hold on, pain ends. This acronym came across my phone screen as I was scrolling through social media last month. Despite my physical pain and emotional discomfort, I laughed and thought to myself, “Whoever came up with this acronym has clearly never dealt with chronic pain. Pain doesn’t…
When I was growing up, my parents never let my pulmonary hypertension (PH) keep our family from living a full life. I sometimes wonder if this determination had something to do with me being the youngest child. By the time I was diagnosed with PH at age 4,…
“To the well-organized mind, death is but the next great adventure.”― J.K. Rowling, in “Harry Potter and the Sorcerer’s Stone“ Working as a hospice nurse before my diagnosis of pulmonary hypertension (PH), I was at the bedside of many people in their final days and hours. It…
When you’ve lived with someone for decades, you feel there’s little about the person that can surprise you. There’s comfort in knowing what to expect. Similarly, it seems that little should surprise me after 20 years of caring for my husband, Tim, who has pulmonary arterial hypertension (PAH). However,…
Are you looking for the perfect present for a loved one managing a rare or chronic condition? As someone with pulmonary hypertension (PH), I often find myself contemplating what’s on my Christmas wish list. And you know what instantly comes to mind? Comfy pajamas that make me feel at…
When I was 5, my mom signed up my older sister for gymnastics. Watching from the side, I asked if I could join, too. But living with a central line and jumping on a trampoline seemed like a recipe for disaster. Not much later, my sister switched to dance.
I recently joined a rare disease advocacy meeting on Zoom, where the subject of the rising cost of living and the difficulty of affording groceries and prescriptions and medical care sparked a lively discussion. During the call, eight people said they rely on food assistance from their state or county,…
Have you ever considered the surprising similarities between managing pulmonary hypertension (PH) and hosting Thanksgiving dinner? Like hosts who plan and prepare an elaborate holiday feast for their guests, PH patients must plan and coordinate the many aspects of their care. Both require a constant juggling act. Preparing Thanksgiving…
With age and time, some life events have become diminished, while others I can recall with perfect clarity. Many of my memories from the days after my husband, Tim, was diagnosed with pulmonary arterial hypertension (PAH) will always remain vivid in my mind and serve as defining moments for…
