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Every few months, a viral video circulates. It features a father who has a chance to listen to his son’s heart, now living in a stranger’s chest. Or a daughter who valiantly offers a kidney to her ailing father. Or maybe the story of a long-term transplant survivor who is…

The spacious wooden table, covered with vibrant sprinkles and pieces of sugar cookies, holds cherished memories of years ago. Our three daughters were gathered around it, the youngest seated in her high chair, all filled with excitement while making cookies and decorating Easter eggs. These festive moments were customary with…

For the past few months, I’ve been fighting a body that feels like it’s knocking me down. In addition to my chronic hypoxia and pulmonary hypertension (PH), my gastrointestinal (GI) system has continued to lose function. I’ve needed an increased amount of oxygen and have been more dependent…

​​”She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” — lawyer and cancer patient Elizabeth Edwards, from her memoir “Resilience: Reflections on the Burdens and Gifts of Facing Life’s Adversities” Almost three years later, I still haven’t recovered to…

Thirty-eight thousand, seven hundred, and ten feet. That’s the length of about 107.5 football fields, including their end zones. It’s also a ballpark estimate of the distance I’ve walked during six-minute walk tests since I was diagnosed with pulmonary hypertension (PH) in 2016. What a journey! A six-minute walk…

In the wake of a recent hospitalization, my life has quickly become dominated by new medications and treatment regimens. In addition to my physical recovery, which includes a focus on eating, hydration, and movement, I’m now filling the rest of my time with additional therapies, including vest and nebulizer…

A recent article by Pulmonary Hypertension News reports on a questionnaire-based study in the U.K. indicating that anxiety and depression are likely linked to less self-compassion by pulmonary hypertension (PH) patients and their caregivers. Studies have also shown that depression and anxiety are alarmingly high…

A cold or the flu comes with challenges, especially for pulmonary hypertension (PH) patients. Because we cannot take decongestants, which cause the pulmonary arteries to narrow, we must largely rely on our body’s natural defense mechanisms. But this can be difficult, as we may already be dealing with…

When I was 6 years old, I was entered into a clinical trial for Tracleer (bosentan). At the time, the pulmonary hypertension (PH) community was pushing to have this drug approved for pediatric use, which made me an ideal candidate. Twenty years later, this drug is a…

“Your future is created by what you do today, not tomorrow.” — author Robert T. Kiyosaki Life with pulmonary hypertension (PH) is messy and unpredictable most days. Because there’s no cure yet, we in the PH community must learn to live in the now. Tomorrow isn’t promised…

Some people might describe me as the type of person who regularly says no to something before coming around to a yes. This might apply to support groups, as I usually don’t join them. Don’t get me wrong, I’m glad they exist for people with rare diseases like…

“I have to shower immediately. I’ll get all of these EKG lead stickers off of me and erase the hospital.” That was the first thought that came to my mind after a hypoxic, or low-oxygen, episode sent me to the hospital the other weekend. Showering after a hospitalization…