Last month, I lost a friend within my rare disease community, pulmonary hypertension (PH). PH continuously takes with no regard for anyone or anything. It wasn’t the first time and won’t be the last time I’ve lost, but it hurts. Since my PH diagnosis 17 years ago, I’ve…
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!
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In a recent column, I shared something I’d been too stubborn to say before: Pushing through fatigue with pulmonary hypertension (PH) almost always costs me more than it gives. The harder I push, the harder I crash. After that column, several readers reached out to say they sometimes…
Lately, I’ve realized I’m in a funk and don’t know how long I’ve been going through this season of my life. I feel overwhelmed. But is it connected to my cross-country move last year? Or perhaps I continue to struggle after recovering from COVID-19. I…
As I searched for a new primary care physician (PCP) in March, I learned that finding my new healthcare team after relocating across the country would prove challenging. The first potential candidate spent three hours going over my medical background with me, only to inform me that my health…
Life after a pulmonary hypertension (PH) diagnosis is stressful. As a Type A personality, I’ve often defined my worth by my productivity. But since my PH diagnosis, I am now working to prioritize my health. We live in a society that praises productivity. Hustle culture is encouraged across social…
My husband, Manny, and I celebrated our 30th wedding anniversary in March. If you know anything about my pulmonary hypertension (PH) journey, you know that 17 years have been with PH. That means that Manny has shared me with PH for over half of our marriage. Although I’m grateful…
It’s no secret that life turned upside down for my family and me when I was diagnosed with pulmonary hypertension (PH) in 2005. But my life was far from over; I still craved so much. My chronic illness may prevent me from achieving goals I once had, but I can…
Patient advocacy is a broad term covering many topics, and the concept leaves many confused. Those of us in the pulmonary hypertension (PH) community must educate ourselves about it. In this column, I primarily refer to self-advocacy and briefly touch on systems advocacy. To me, self-advocacy means making my…
“The courage it takes to share your story might be the very thing someone else needs to open their heart to hope.” — Unknown My hands were clammy and my heart was racing as I waited to meet a prospective new primary care provider (PCP). I sat in the…
I’ll never forget the day I knew something was wrong with my body. It was sending me warnings. The symptoms included increased shortness of breath from minor activities like talking, presyncope, which is the sensation of nearly fainting, heart palpitations, and swelling in my abdomen and lower extremities. I…
When I walk my dog around my new neighborhood carrying my oxygen, my neighbors seem to look at me like I’m an alien. Many stare and gawk, as if they’re speculating about what my invisible illness might be, since I otherwise appear to be a healthy…
As another year comes to an end, I reflect on memories from 2021. Since my pulmonary hypertension (PH) diagnosis, I desire reflection more each year. Those of us with rare diseases often get caught up in the mundane moments of being a patient. Whether this means taking handfuls of medications…
“Seeing is believing, but sometimes the most real things in the world are the things we can’t see.” ― Chris Van Allsburg, “The Polar Express” When I was young, my parents worked diligently to create a sense of wonder during the holidays. My sisters and I participated in church,…
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