A few years ago, I shared an image on social media of my growing library. I love thrifting books just as much as I love reading them. It’s been a joy to invest in my collection of secondhand books in adulthood. A friend and fellow chronic illness warrior commented…
Most of my memories with pulmonary hypertension (PH) can be summarized with three words: shortness of breath. I was always trying to catch my breath anywhere I went. But over time, as predicted, the shortness of breath began to cause other issues. As my pulmonary pressures worsened, my…
When I was growing up, I noticed that my parents were very specific when identifying my illness. I didn’t just have pulmonary hypertension, I had pulmonary arterial hypertension (PAH). More specifically, I had idiopathic PAH, meaning that the cause was unknown. For a long time, these…
Recently, the mother of a young transplant recipient reached out to me about my experience with hair loss. She said it was a side effect of the transplant medications and had caught them by surprise. I was quick to pass along my hair journey, which was, and continues…
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 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,…
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.
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…
This column describes the author’s own experiences with some prescription and over-the-counter drugs. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I was in college, I always had a Ricola cough drop on hand. They littered my…
When I was 3 years old, my family temporarily moved to Michigan because of my dad’s work. A year later, while we were still there, I was diagnosed with pulmonary hypertension (PH). It was overwhelming to receive such life-changing news at a time when we were removed from family,…
The years since my heart-lung transplant due to pulmonary hypertension have passed with fluctuating clarity. Some seasons have been rapid or insignificant, blurring one into another. Others remain in my mind, fixed in sharp definition — as if a part of me is still arrested in those moments.
One of the first things my parents were told when I received a pulmonary hypertension (PH) diagnosis at the age of 4 was that I wouldn’t be able to have children. My mom thought this was an absurd topic to bring up, given that the same doctors didn’t…
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