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…
Columns
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,…
Living with a rare disease like pulmonary hypertension (PH) presents unique challenges. Balancing work, your personal life, and your health can feel overwhelming for both patients and their caregivers. If you find yourself struggling to balance work and life with a rare disease, please know that you’re…
Summer, to quote Paulette from “Legally Blonde 2: Red, White & Blonde,” “makes me want a hot dog real bad!” When I picture scenes of summers past, I think of family and friends enjoying backyard barbecues, beach bonfires, camping trips, and outings to the ballpark. I can also…
Since May, I’d been faced with a challenge familiar to many women: finding the perfect dress for a wedding. Two close friends of mine were married last weekend, and I had the honor of attending the wedding and reciting original poetry during the ceremony. After my heart-lung transplant in…
