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.

There are so many things to be thankful for, even with PH

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…

Rare disease advocacy is a year-round endeavor for me

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…

4 things you might have noticed while living with PH

“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.

Learning about disease progression is a bitter pill to swallow

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…

Old and new ‘PHriends’ made for an unforgettable PHA conference

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…

How music can affect sexual health while living with PH

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 —…

Facing fear and anxiety is normal with pulmonary hypertension

Fear and anxiety are often among the first emotions we experience after being diagnosed with pulmonary hypertension (PH) or other rare and complex diseases. Recently, my therapist asked me, “Did you know that naming your fears is the first step in preventing them from controlling your mind?” Despite having…

Travel anxiety and adventure with pulmonary hypertension

Traveling with a rare disease such as pulmonary hypertension (PH) isn’t just about booking flights and hotels; it’s an adventure full of challenges! Once the plans are set, the actual logistics begin. Ensuring that I have all my treatments, preparing for possible emergencies, and navigating the complexities…

Why symptom tracking is important for managing PH

“How often do you experience heart palpitations or chest pains?” This question is one of the first I hear every time I have an appointment with my pulmonary hypertension (PH) specialist or other members of my healthcare team. Palpitations, chest pain and tightness, shortness of breath, and…