If you’ve been following my journey, you’re probably aware that I navigate pulmonary hypertension (PH) alongside a mix of other intricate coexisting conditions. The physical and mental strain my body endures leads me through a daily battle with symptoms and the toll of finding and maintaining…
Worth the PHight - a Column by Jen Cueva
Over the past 19 years, amid the challenges of managing a rare disease called pulmonary hypertension (PH), I’ve had countless encounters with doctors. As I’ve navigated the intricate landscape of chronic kidney disease, anemia, and various other health conditions, keeping track of all the specialists I consult…
Pulmonary hypertension (PH) has its challenges, but they’re not always visible to others. Some days, for example, it feels like a plastic bag is suffocating me. That’s how I described my breathing difficulties when my durable medical equipment company denied me oxygen because it was a “luxury.” Many…
Inadequate. Weak. Useless. When we’re battling chronic illnesses like pulmonary hypertension (PH) and are forced to endure chronic pain, emotions like these can easily overwhelm us. It’s no wonder we feel useless or “less than” in such circumstances. We often define ourselves by what we do, and when…
A close friend and I recently discussed how our rare diseases affect our spouses. I have pulmonary hypertension (PH) and she has multiple sclerosis. Our partners provide unwavering love and support as we manage our chronic conditions. Afterward, I reflected on the conversation and on my incredible husband and…
Welcome to 2024! I enjoy the start of a new year because it allows me to reminisce about the past and brainstorm about how to approach the coming months. Instead of making resolutions, though, I’m all about focusing on personal growth. Which aspects of my life can I either bid…
Living with a chronic illness feels like being caught in a revolving door of doctor appointments and surprise trips to the emergency room. Trust me, I’ve been caught there more times than I can count, all thanks to pulmonary hypertension (PH). But amid the challenges, I’ve gained invaluable…
When we face setbacks from illness, it’s easy to feel like the world is crumbling around us, as if we’ve failed and there’s no point trying anymore. But here’s the thing: We can’t let those thoughts consume us. It’s easier said than done, right? Trust me, I’ve been through…
“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…
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…
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…
