Surviving day in and day out with a life-threatening illness like pulmonary hypertension (PH), well, simply sucks. My struggles with numerous symptoms and medication side effects weigh me down and rapidly deplete me. Uptravi (selexipag) and Revatio (sildenafil) can cause horrific side effects, and these are my two primary…
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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A few weeks ago, a close friend who also manages a rare disease asked for my thoughts on artificial intelligence (AI) in healthcare. She sounded anxious — AI was suddenly appearing in her medical appointments, and she wasn’t sure what to make of it. This issue has actually been on…
“Advocacy August” is here. Because pulmonary hypertension (PH) is a rare disease and has no cure, it is necessary that we promote awareness among those who can make a difference in our lives. When it comes to government decisions, advocacy means helping people who might otherwise be overlooked to…
My schedule was hectic this week. I had several days of bloodwork and doctors’ appointments scheduled. The heat here in Texas with its suffocating humidity is not ideal weather for someone with pulmonary hypertension (PH). My energy levels were quickly depleted, and I became mentally and physically drained. When…
“Good morning, Mrs. Cueva,” said the young lady on the phone. During our call, she informed me of a change in my medication coverage that would take effect in the following weeks. “Your copay will now be $830 per month instead of the usual $200,” she said. I’m not sure…
Since my previous column was heart-wrenching and vulnerable, I decided to make this one fun. At the end of April, my husband smashed his first MS 150 ride. He started in Houston, Texas, and crossed the finish line in Austin. Though I do not have multiple sclerosis,…
Survivor’s guilt is something that I’ve struggled with over the past 14 years. Living with the rare and life-threatening disease that is PH, I continuously lose people I care for. Lately, it seems that every time I look at my social media, at least two or three PH patients have…
Summer is here, and perhaps a road trip is in your plans for the season. I’ve always looked forward to this time of year. However, living with pulmonary hypertension (PH), summer can take a toll on my body. Dealing with the unpredictable ”variety pack” of PH symptoms, it…
Living with pulmonary hypertension (PH) for the past 14 years has been a challenge, to say the least. Along this journey, an important relationship for me has been with my PH specialist. I started out with a few different doctors before finding an actual PH specialist who “vibes” with…
Welcome to Jen Cueva’s “Worth the PHight,” a new Pulmonary Hypertension News Today column. Hey, y’all! I am happy to be here writing this column, and I hope it will help others out there who are PHighting this same PHight. Living with pulmonary hypertension (PH) for the last 14…
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