Growing up with pulmonary hypertension (PH), I was fortunate to avoid many situations that required home healthcare. My parents and I used the service a few times, mainly when we needed training for a new medication or when both my mom and…
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Most people focus on the physical challenges of living with a rare disease like pulmonary hypertension (PH). However, conversations about mental and emotional health don’t get enough airtime, in my opinion. If you’re reading this and thinking that mental health issues like anxiety and depression aren’t…
Nestled in my cozy swing chair on the patio, I’m soaking up the brisk wind that playfully tosses my hair. I’m listening to the sweet melody of my wind chimes, a thoughtful gift from my husband, Manny. Sunlight dances through the miniature stained-glass hot-air balloon atop the chimes. The color…
When living with a chronic illness, countless situations arise that require one to prioritize health above all else. When I was growing up and my friends and peers were expanding their horizons, I often decided to take a back seat to focus on self-preservation. These sacrifices became even more common…
The pulmonary hypertension (PH) community is buzzing with excitement! It’s not every week that the U.S. Food and Drug Administration (FDA) approves two new treatments for a rare disease like PH. This monumental achievement is a testament to the dedication and passion of researchers, scientists, and the rest…
I was listening to a sermon via a podcast the other weekend. During the announcements for the week, my ears perked up as the pastor eagerly discussed an exciting event coming up. It would be a three-day affair. Each day involved walking a portion of the city, stopping at various…
Battling pulmonary hypertension (PH) is like navigating a storm that never seems to end, casting unparalleled ripples through our family life. Throw a hospitalization into the mix, and stress and worry suddenly spike to the stratosphere. As the one in the eye of this PH storm, I…
Eight years ago, I meant to bid winter adieu from an all-inclusive beach resort. Instead, I welcomed spring from a hospital bed. I went on a trip — that’s for sure — just not the relaxing and restorative one I had imagined. There were no drinks with little umbrellas for…
“Just one more” sounds like a line from a country song, doesn’t it? Flash back a few years, and you’d catch me saying that at the local karaoke bar. It was my little plea to my husband, Manny, and a promise that we could head home after just one more…
At my most recent post-transplant clinic appointment, my transplant pulmonologist added a new lab to my testing. Prospera, as it’s called, is a way of assessing the risk of active organ rejection in transplant patients. Prospera isn’t new in the world of organ transplantation. It was initially created…
In her classic 1990s song “Ironic,” Alanis Morissette sings about spoons. Describing life’s little ironies, the Canadian singer proclaims, “It’s like 10,000 spoons when all you need is a knife.” Hey, if Morissette doesn’t need any of those spoons, I’d be more than happy to take a few…
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…
