Columns

In 2002, three years after my pulmonary hypertension (PH) diagnosis, my family and I made our way to the Pulmonary Hypertension Association’s (PHA) International PH Conference. I have no memories of this gathering, which was the first we’d attended, but it soon became a treasured part of…

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…

The pain caused my right knee to seize with every step. As I moved through the Indianapolis hotel room that morning, the day’s busy schedule simmering in the back of my mind, I knew I had to listen to my body and change my plans, so I ordered a car…

One day, when I was 15, I tagged along with my cousin and her partner to run a few errands. In the car, Ben Howard, an artist I’d never heard of, played on the CD player. Two songs later, I was hooked. I’d never heard music like his. When we…

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…

In the world of chronic illness, medications can be many things. At best, they’re a blessing, but more often than not, I’ve found them to be a necessary evil. While living with pulmonary hypertension (PH) for 19 years, I remained on a fairly consistent medication regimen. My doctors…

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 I make plans to go to a concert, amusement park, or sporting event, my first thought turns to accessibility issues. It’s unfortunate, but with today’s heightened security and limits on what you can bring into a venue, getting in with a medical device sometimes feels like a small miracle.

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,…