In August, I had the amazing opportunity to attend the Pulmonary Hypertension Association’s (PHA) International PH Conference in Indianapolis. Meeting newly diagnosed patients and caregivers was a vibrant experience. For many, it was their first time attending such an event, and the energy was contagious. Even the…
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Companionship and physical intimacy are universal needs that play an important physical, psychological, emotional, and social role in our lives. But living with a rare condition like pulmonary hypertension (PH) can complicate matters. Intimacy often becomes secondary when I am exhausted, in pain, or short of breath —…
The night before my 15th birthday, my mom looked at me and took a moment. Then with love and a bit of bluntness, she said, “Every year is a gift.” It could’ve been a general statement regarding the fragility of life, but I knew better. Instead, it was her…
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…
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…
