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…
Worth the PHight - a Column by Jen Cueva
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,…
Last week, one of my morning devotionals left me in deep thought for most of the day. It was about apologizing for everything that makes you the one-of-a-kind person you are. With both hands held high, I admit I’m guilty. Are you guilty of this, too? I’m sorry I missed…
“Don’t be afraid to give up the good to go for the great.” — John D. Rockefeller Recently, my husband, Manny, and I made a big life decision by selling our home in Texas and relocating to San Diego. This was always our dream, but we never thought it…
Living with pulmonary hypertension (PH) is a constant challenge. If I’m not educating myself, I’m educating my family and friends, and at times, even my medical team. Yes, the members of my medical team are experts in medicine, but I am the expert of my own body. Recently, I…
Some days, as I catch a glimpse of the woman in the mirror, I find the reflection unrecognizable. The dark, weary circles around the eyes, the protruding cheek and collarbones, the pale, bluish skin — that’s me. This can leave me startled and discontented, with tears running down my face.
What happens when one still suffers from COVID-19-related symptoms long after infection? Unfortunately, I am one of those people. My medical team is comprised of multiple specialists, along with my primary care doctor. Most of this team is clueless about the long-term effects of the virus, cringing as we…
