Recent news headlines have sparked significant concern among those of us in the pulmonary hypertension (PH) and other rare disease communities. The massive budget and staff cuts across multiple federal agencies are particularly troubling, prompting a flurry of conversations both online and in private. As we navigate these challenging…
Worth the PHight - a Column by Jen Cueva
In addition to physical challenges, living with a complex condition like pulmonary hypertension (PH) also means fighting mental and emotional battles. I constantly feel a push and pull between frustration and gratitude. But these are moments that can teach me a lot about myself and the people I love.
This time of year can feel heavy as many of us start reflecting on resolutions or goals we haven’t yet fulfilled. Maybe you promised yourself you’d eat a healthier diet or get more sleep, but life had other plans. It happens to the best of us. For those in the…
Are you managing chronic pain alongside pulmonary hypertension (PH)? Did it disrupt your holiday plans? If you answered yes, you’re not alone. Many folks in the PH and broader rare disease communities share similar frustrations with having to adjust plans because of unrelenting pain. Dealing with chronic pain…
Here we are, just a week before Christmas and somehow my brain is still stuck in November. How did that happen? This year has been a whirlwind of activity in terms of managing my pulmonary hypertension (PH) and other health challenges. The past six months have been especially rough…
If I asked you to list every medication you or a loved one takes — along with the doses — could you do it? You might be surprised how many in the pulmonary hypertension (PH) community can’t recall those details when it matters most. This year, I learned just…
People often ask me, “How can you be so grateful while living with pulmonary hypertension (PH)?” Little do they know that gratitude is a go-to practice for me. If you’ve read my past columns, you’ll know the topic comes up frequently. As Thanksgiving approaches, many start reflecting…
As the holidays draw near, it’s also time to shine a spotlight on education, awareness, and advocacy for pulmonary hypertension (PH). PH has been a cause that’s close to my heart for nearly two decades. PH Awareness Month in November is a perfect opportunity to educate others about…
“The flower that blooms in adversity is the most rare and beautiful of all.” — Disney’s “Mulan” Being diagnosed with pulmonary hypertension (PH) is a daunting experience, like stepping into uncharted territory without a map. Unlike more common conditions, there’s no simple guidebook for navigating this rare disease.
Living with a rare or chronic disease is never easy, as it creates many emotional, financial, physical, and social challenges. One difficult aspect is learning that a particular condition has progressed. How are we supposed to cope with news that our health is getting worse? I face this unfortunate…
In August, I had the amazing opportunity to attend the Pulmonary Hypertension Association’s (PHA) International PH Conference in Indianapolis. Meeting newly diagnosed patients and caregivers was a vibrant experience. For many, it was their first time attending such an event, and the energy was contagious. Even the…
Companionship and physical intimacy are universal needs that play an important physical, psychological, emotional, and social role in our lives. But living with a rare condition like pulmonary hypertension (PH) can complicate matters. Intimacy often becomes secondary when I am exhausted, in pain, or short of breath —…
