As the temperature climbs, many of us are itching to soak up some sun and make memories with our loved ones. But if you have pulmonary hypertension (PH) like me, you may often feel too drained to fully enjoy those golden opportunities. Are you torn between the desire to…
Worth the PHight - a Column by Jen Cueva
My alarm screams at 7 a.m., and in a sleepy rebellion, I hit snooze, chuck my phone aside, and dive back under my covers. I’m gearing up for the day like a warrior preparing for battle, still feeling the echoes of last night’s skirmishes. The relentless ache in my legs…
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…
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…
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…
“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…
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…
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…
