Worth the PHight - a Column by Jen Cueva

workplace, fear, interview, less is more, unique, covid-19

Jen is a columnist and forum moderator for Pulmonary Hypertension News Today. Jen worked in nursing before the script changed upon her diagnosis of PH in 2005. Advocating and meeting those with PH has always been an essential part of her life. Her passion is to instill hope and remind others in the PH community that they are not alone.

In her weekly column, she delves into the roller coaster of emotions that come along with PH. Having this opportunity to play a role in helping others become more informed and educated so they are more empowered in their journey is meaningful and powerful for her. Jen lives in Southern California with her husband. Together, we PHight stronger.

We need better access to healthcare in the US

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…

Unwavering support: A love letter to my husband

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…

With these hospital go-bag essentials, I’m always prepared

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…

Finding my strength while overcoming a medical crisis

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…

Life lessons from the dying: How to embrace love and purpose

“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…

Navigating the struggle of food insecurity with a rare disease

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,…

How hosting Thanksgiving dinner is similar to managing PH

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…


A Conversation With Rare Disease Advocates