Organizing health information is crucial to rare disease management
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…
Worth the PHight — Jen Cueva
Jen Cueva lives in San Diego, California, with her husband and mini schnauzer, Zoé. Jen worked in nursing before the script changed upon her diagnosis of pulmonary hypertension (PH), group 1, in 2005. Advocacy has been essential to her life. Her passion is to instill hope and remind others in the PH community that they are not alone. To do this, she serves as a forum moderator for Pulmonary Hypertension News and in her weekly column she delves into the roller coaster of emotions that accompany PH. It is powerful and meaningful to her to have this opportunity to play a role in helping others become more informed and educated so they are more empowered in their journey. Together, we PHight stronger!
Featured Post
Here’s what happens when I underestimate the summer heat
A recent e-bike ride I took with my husband, Manny, was quite the learning experience. What began as a pleasant afternoon quickly reminded us of the importance of heat safety, especially for those of…
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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…
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…
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…
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…
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,…
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.
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…
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.
A special friendship forged by the unique world of chronic illness
As we grow older, making new friends can become more challenging. Add a rare disease like pulmonary hypertension (PH) to the mix and it gets even harder. But five years ago, when…
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…
So you’ve just received a pulmonary hypertension diagnosis. What now?
If you’ve recently been diagnosed with pulmonary hypertension (PH), this column is for you. I’ve been there, and I know what you’re going through. It might feel like everything is a…
