Worth the PHight - a Column by Jen Cueva

A rare disease like pulmonary hypertension (PH) is challenging enough to manage. Add other coexisting conditions and it gets even more complicated. I have several coexisting conditions, but my stage 3 chronic kidney disease (CKD) is the most difficult to manage alongside my PH. I must be organized…

“I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn’t really.” ― co-author Jennifer Starzec, “Determination” Having pulmonary hypertension (PH) can be incredibly isolating. Because the disease is rare, finding others who understand and can relate…

Life with pulmonary hypertension (PH) is overwhelming and exhausting at times. We patients often find ourselves sitting in doctors’ offices, calling about insurance claims, and checking on medication refills. This can be difficult when conversations seem almost always centered on treatments, test results, and the latest PH research.

Life with pulmonary hypertension (PH), a rare disease with no cure, is challenging. The helplessness is compounded by the fact that a solution may exist, but it’s currently out of reach. To get through these emotions, we who have PH rely on faith and hope to motivate…

Goals give us direction. They put a powerful force into play on universal, conscious, and subconscious levels. However, those of us with chronic and rare diseases like pulmonary hypertension (PH) often push our bodies too hard. That’s why this year, I’m setting a goal to be more realistic. Almost…

As we’re in the middle of the holiday season, many people are swiping their credit cards for the perfect gifts for their loved ones. What about those of us in the rare disease community already struggling to pay for medications and other treatments to improve quality of life or…

“Intimacy doesn’t have all that much to do with backseats of cars. Real intimacy is brushing your teeth together.” ― author and screenwriter Gabrielle Zevin Feelings of intimacy can help us feel more connected to the people we love. Intimacy is a decision. It’s often a risk, too, because…

During a recent drive up a mountainous road to the small, quaint town of Julian, California, I suddenly felt the telltale signs of altitude sickness hit me. The first was a bad headache. We continued driving, though, because my husband, Manny, and I both thought that Julian — which…

Unless you live with a chronic illness or care for someone who does, it isn’t easy to wrap your head around how much time it takes to manage a disease. A few months ago, I asked members of our Pulmonary Hypertension News Forums, “What makes your health a…

As I debated what to write this week, I struggled for days. Continuous brain fog makes the decision difficult more often than not. My brain fog presents as lapses in memory, in which I forget what I was saying or other simple tasks. The icing on the cake is…

When I describe my pulmonary hypertension (PH) as stable, many think it means that I’m in remission. They don’t comprehend that, while my numbers may be stable, I still have PH. I continue to experience symptoms, require oxygen, and PHight daily. Those of us with rare, chronic illnesses celebrate when…

Last month I struggled with my mental health more than usual. My anxiety was out of control. I recognized that I needed more help and went to see a psychiatrist my primary care physician had suggested a few times. She ordered a few medications at a low dose. But…