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.

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…

For family caregivers month, recognize the toll as well as the help

“God gave burdens; he also gave shoulders.” — one version of a Yiddish proverb When loved ones become unable to care for themselves, the entire family can go through a heart-wrenching experience. Primary caregivers will witness those health struggles firsthand and thus bear an emotional burden that outsiders…

Behind every new treatment for PH are dedicated professionals

If you haven’t heard about the advancements in potential treatments for those of us in the pulmonary hypertension (PH) community, hold on to your seats! I recently spoke with a dedicated, well-known PH specialist from the Houston Methodist Hospital, Dr. Sandeep Sahay, the co-director of the hospital’s…

Shed your leaves and let go of what no longer serves you

Fall has always been my favorite season. Unfortunately, San Diego doesn’t quite have the enchanting fall foliage that other places do. Instead of a vibrant cascade of leaves, it’s more like a few scattered ones and a whimsical dance of pollen floating through the air. That mix mingles here with…

Ways I help my husband and caregiver prioritize self-care

Did you know? According to the National Institutes of Health, millions of Americans each year selflessly provide unpaid care for loved ones with chronic or severe health conditions like pulmonary hypertension (PH). These remarkable individuals dedicate countless hours to assisting others — and we can’t overlook the toll…

Could my brain fog and cognitive decline be linked to my PH?

“How are your focus and concentration? Do you need help to stay engaged while reading, writing your columns, or watching movies?” These were the questions my psychiatrist posed to me during our recent telehealth session. Surprisingly, she linked my attention-deficit/hyperactivity disorder to long-term COVID-19. But she reminded me…


A Conversation With Rare Disease Advocates