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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…

On the day when I was supposed to be writing this, I was instead sitting on a bed in a hospital emergency department. Though the room was designed for a short stay, I had a full setup around me within hours of being admitted. To my right were a high-flow…

Turning half a century old is a remarkable milestone! When I was diagnosed with pulmonary hypertension (PH) almost 19 years ago, I was told that I had only three to five years left. Each birthday after those first five years feels like a bonus. So far, I’ve had…

When you struggle to breathe, yet fail to understand why, it can feel like you’ve lost your way in a dark wilderness. It’s scary and isolating, and you have nary a map, flashlight, or proper diagnosis to help find a lighted path out of the woods. I saw my…