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.

How my friend and I bond all the more because of our rare diseases

The spacious wooden table, covered with vibrant sprinkles and pieces of sugar cookies, holds cherished memories of years ago. Our three daughters were gathered around it, the youngest seated in her high chair, all filled with excitement while making cookies and decorating Easter eggs. These festive moments were customary with…

Adjusting my sails again with a 2nd case of COVID-19

​​”She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” — lawyer and cancer patient Elizabeth Edwards, from her memoir “Resilience: Reflections on the Burdens and Gifts of Facing Life’s Adversities” Almost three years later, I still haven’t recovered to…

How I manage cold and flu symptoms as someone with PH

A cold or the flu comes with challenges, especially for pulmonary hypertension (PH) patients. Because we cannot take decongestants, which cause the pulmonary arteries to narrow, we must largely rely on our body’s natural defense mechanisms. But this can be difficult, as we may already be dealing with…

The value of learning how to live in the moment with PH

“Your future is created by what you do today, not tomorrow.” — author Robert T. Kiyosaki Life with pulmonary hypertension (PH) is messy and unpredictable most days. Because there’s no cure yet, we in the PH community must learn to live in the now. Tomorrow isn’t promised…

How to protect your kidneys while managing a rare disease

A rare disease like pulmonary hypertension (PH) is challenging enough to manage. Add other coexisting conditions and it gets even more complicated. I have several coexisting conditions, but my stage 3 chronic kidney disease (CKD) is the most difficult to manage alongside my PH. I must be organized…

Why I help bring light to the social disparities PHighters face

“I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn’t really.” ― co-author Jennifer Starzec, “Determination” Having pulmonary hypertension (PH) can be incredibly isolating. Because the disease is rare, finding others who understand and can relate…

My self-care strategy includes ‘no medical talk’ days

Life with pulmonary hypertension (PH) is overwhelming and exhausting at times. We patients often find ourselves sitting in doctors’ offices, calling about insurance claims, and checking on medication refills. This can be difficult when conversations seem almost always centered on treatments, test results, and the latest PH research.

Raising Awareness About the Benefits of Clinical Trials

Life with pulmonary hypertension (PH), a rare disease with no cure, is challenging. The helplessness is compounded by the fact that a solution may exist, but it’s currently out of reach. To get through these emotions, we who have PH rely on faith and hope to motivate…

This Holiday Season, Share Kindness and Gratitude

As we’re in the middle of the holiday season, many people are swiping their credit cards for the perfect gifts for their loved ones. What about those of us in the rare disease community already struggling to pay for medications and other treatments to improve quality of life or…


A Conversation With Rare Disease Advocates