A few weeks ago, a close friend who also manages a rare disease asked for my thoughts on artificial intelligence (AI) in healthcare. She sounded anxious — AI was suddenly appearing in her medical appointments, and she wasn’t sure what to make of it. This issue has actually been on…
Worth the PHight - a Column by Jen Cueva
If you’ve ever felt like your body has a built-in weather app that predicts cold fronts with an extra side of aches, you’re not alone. Chronic pain is a relentless companion for many, and for those of us in the pulmonary hypertension (PH) community, it can feel like…
For many of us, the new year doesn’t bring hope or promise. Instead, it arrives with a heavy weight, filled with uncertainties that feel more threatening than exciting. We worry about declining health, medical bills burdening our families, and the persistent fear that insurance companies will deny us the…
Just as life seemed to be moving smoothly for me and a new treatment was showing promise, I unexpectedly found myself “on vacation” at my local hospital. For those of us navigating the complicated world of chronic and rare illnesses, these unplanned hospitalizations are sometimes inevitable. Living with a rare…
Before I was diagnosed with pulmonary hypertension (PH), my life moved at full speed. I worked full time as a hospice care nurse, a job that was both emotionally demanding and deeply fulfilling. I was an active wife and mom, constantly on the go. Many of my mornings started…
If you saw my husband, Manny, on the street, you might think he looks angry or even a little intimidating. With his love for Harleys, T-shirts, and plaid, he fits the biker persona well. But what you can’t see is the immense heart of the man who has been my…
Have you ever held back from sharing good news about your health, fearing it might diminish other people’s struggles or come across as bragging? This sentiment may resonate for many of us with pulmonary hypertension (PH), but celebrating our victories is a powerful way to raise awareness about this…
“Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.” — Michael J. Fox For over 10 years, I’ve been navigating life with chronic pain, a silent battle I’ve fought while managing pulmonary hypertension (PH) and…
A recent e-bike ride I took with my husband, Manny, was quite the learning experience. What began as a pleasant afternoon quickly reminded us of the importance of heat safety, especially for those of us managing pulmonary hypertension (PH). We had enjoyed a light lunch and a couple of…
“Why am I so tired all the time?” If you’ve ever thought that while managing your pulmonary hypertension (PH), you’re not alone. Fatigue is a well-known PH symptom that often goes unaddressed. In my experience, sleep plays a factor in my fatigue levels. Despite getting what I thought was…
Hormone replacement therapy is often used to manage symptoms of menopause, but for those of us with conditions like pulmonary hypertension (PH) and congestive heart failure, it’s not so simple. The risks of hormone replacement therapy potentially worsening our fragile cardiovascular and renal systems make it a no-go for…
Managing pulmonary hypertension (PH) for 20 years has not only shaped my life, but it’s also allowed me to connect deeply with a resilient and inspiring community. Over the years, I’ve witnessed firsthand the strength of patients and caregivers who come together to support one another, champion awareness, and…
