If only it was that I overindulged during the holidays

By Jen Cueva

At night, after a long day of work, I would often crawl up the stairs in our house to get a shower and get into bed. Because this began after the holiday season, I thought it was because I over indulged in food over the holidays. If only that were true.

After several colleagues at work noticed I was experiencing shortness of breath (SOB) while talking, I knew something was “off” with my body, but I had no idea why. However, I also felt exhausted quickly and had swollen hands, belly, and lower extremities.

One day, while walking through a local supermarket after work, I felt lightheaded and dizzy. My heart was racing so fast that it freaked me out. My shortness of breath also increased, which I knew was a bad sign. I left my cart with the few items I had put in my basket up front and walked to my car. That short distance felt more like a marathon that day.

Once safely in my car, I texted my husband at work to tell him something was happening with my body. But, because I was planning to drive home, only about ten minutes away, I wanted him to know where I was coming from. At that moment, I wasn’t confident I would make it home, but I was going to try my best. Thank God for watching over me as I safely made it home to my family.

Fast forward about a month, when I was rushed to the hospital with some of the same symptoms listed above, but now blue lips and feet were present. I knew that was a sign of low oxygen, but the reason was questionable. Once I was at the hospital, of course, I needed several tests, including tons of bloodwork, x-rays, electrocardiogram, and several other breathing tests, including an arterial blood gas (ABG) procedure, which I will always recall.

Eventually, after endless tests and one frustrated patient, I was finally given a diagnosis. Pulmonary arterial hypertension, or PH for short, is a rare lung disease affecting the heart. Mayo Clinic defines PH as abnormally high blood pressure in the lungs’ arteries. This increased pressure can damage the blood vessels and make it difficult for the heart to pump blood through the lungs.

My PH diagnosis was in 2005, and there is no cure yet! However, with the passion and dedication of scientists, researchers, pharmacists, and my PH healthcare team, we do have over a dozen medications that can help slow the progression of PH. Now, after recently celebrating my twentieth PH anniversary, I’m incredibly grateful. I wouldn’t be here today without everyone I consider to be on my team.

Luckily, my diagnosis was relatively quick compared to many others in the PH community. I’ve heard stories of people waiting several years—some even as long as a decade—to receive an accurate diagnosis. The challenge lies in the fact that PH symptoms often mimic those of more common conditions, and awareness of PH is still limited.

I strongly recommend seeking a knowledgeable medical team for anyone who suspects they or a loved one may have PH. The Pulmonary Hypertension Association offers a convenient “Find a Doctor” tool, which I frequently suggest to new patients and caregivers. As a columnist and forum moderator for Pulmonary Hypertension News, I often connect with others in the PH community and encourage those newly diagnosed to do the same. Talking to others who have walked this path provides invaluable support and reassurance. Knowing you’re not alone in this battle can make the journey easier.

Today, you’ll find me advocating and spreading awareness about PH on many different platforms. I’ve also shared my story last year in several books, a collection of stories from those in the rare disease community. Last February, the book Kaleidoscope was published on Amazon for Rare Disease Day. Then, I wrote a complete chapter in a book featuring about twenty other writers impacted by rare diseases. Positively Rare was published in November of 2024. Both books share proceeds with the rare disease community.  

I’ve found my purpose in life, and I will continue to share my experiences and be the voice for those who aren’t ready to share their stories. I usually agree to podcast interviews and other opportunities that come up. And always, anyone in the PH community who feels isolated can count on me.

We may not have a cure yet, but we can work together while supporting one another; we can make a difference in the lives of those affected by this disease. So don’t be afraid to reach out, connect with others, and join the PHight against PH.

You can read more of Jen’s story in the book Positively Rare, available here.