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…
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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“When the world is so complicated, the simple gift of friendship is within all of our hands.” — Maria Shriver If you or someone you love manages a rare disease like pulmonary hypertension (PH), you already know how deeply it touches every part of life. From everyday tasks to…
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…
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 I joined Bionews (the parent company of this website) and connected with the fantastic…
“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…
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 blur as you grapple with the whirlwind of emotions that come with such a devastating…
Do you ever feel like a fraud because of your rare disease? For the past two decades while managing pulmonary hypertension (PH), I’ve battled self-doubt, shame, and feelings of inadequacy. I know I’m not alone. We all face these emotions at different points in life, and through conversations with…
I have pulmonary hypertension (PH), which is difficult to manage, but it doesn’t affect only me. It also affects the people closest to me, including my husband, Manny, who is my rock. Unfortunately, living with a rare disease can strain a marriage at times. When that happens,…
When health issues strike, they can be devastating, turning your world upside down in an instant. You can’t just wish away a rare disease like pulmonary hypertension (PH); its future impact is a daunting unknown. Last week, I had an “aha!” moment with my young adult daughter, Kayla,…
Living with a rare disease like pulmonary hypertension (PH) presents unique challenges. Balancing work, your personal life, and your health can feel overwhelming for both patients and their caregivers. If you find yourself struggling to balance work and life with a rare disease, please know that you’re…
“Never get a chronic illness; it’s really inconvenient for other people.” I stumbled upon a meme with this quote while scrolling through social media last week, and, wow, did it hit home! Can you relate? As someone managing pulmonary hypertension (PH) and other health conditions, I found this…
As I opened my email inbox, a headline instantly caught my eye: “Massive heat wave heading for USA next week.” This got me thinking about how heat affects those of us with pulmonary hypertension (PH). Here in sunny San Diego, many in our PH community are bracing…
With warmer months on the horizon, many of us eagerly await the fresh fruits and vegetables they bring. I’m one of those people who can’t wait for the fresh produce season. It benefits the pulmonary hypertension (PH) community, too, as we’re often advised to follow a heart-healthy…
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