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…
“God gave burdens; he also gave shoulders.” — one version of a Yiddish proverb When loved ones become unable to care for themselves, the entire family can go through a heart-wrenching experience. Primary caregivers will witness those health struggles firsthand and thus bear an emotional burden that outsiders…
With a history of eight major cardiovascular surgeries, I’m often assumed to be a pro at recovering from an operation. Maybe so, but no matter how many surgeries or procedures I endure, it never gets easier. I’m now healing after a successful bypass revision of two of my…
Loving someone with a poor prognosis is something I found myself unprepared for. With years of marriage comes history to draw upon, an established love and hard times under your belt. Time spent together through different seasons of life gives you a level of comfort and attachment. When newly married,…
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