Columns

I’m an avid reader who, at 50, still considers “The Little Engine That Could” to be one of my favorite books. This timeless, inspirational story and its catchphrase, “I think I can,” date back to a Swedish version in 1902. As an adult, I had the pleasure of reading…

It’s no secret that life turned upside down for my family and me when I was diagnosed with pulmonary hypertension (PH) in 2005. But my life was far from over; I still craved so much. My chronic illness may prevent me from achieving goals I once had, but I can…

Graphic artist and children’s book illustrator Mary Engelbreit helped popularize one of my favorite inspirational phrases, “Bloom where you are planted.” Through colorful illustrations and uplifting phrases, she inspires others to find joy, humor, hope, love, and beauty wherever they are in life. But what if you’re in a…

It’s difficult for me to identify when an organ transplant became a genuine possibility within my personal journey. For my parents, it was certainly when I was just 4 years old, at my pulmonary hypertension (PH) diagnosis. Like many, they heard from doctors that I would likely live only…

There’s a scene in Disney’s classic animated film “Aladdin” in which the evil sorcerer Jafar transforms into a snake and squeezes Aladdin within an inch of his life. As a kid, I found this scene rather frightening. As an adult living with a serious chronic illness and respiratory disease, I…

I happened upon a meme of a cat lying flat on its belly, ears pulled back on alert, chin resting between two tense paws, and eyes wide with a look that could kill. The caption read, “I’m so calm, happy, and well-rested — said no caregiver ever!” My ability to…

The hallway felt cold despite the extra blanket the transfer specialist gave me before moving me in my hospital bed. We headed to another wing of the building for yet another test. I waited in a dimly lit hallway for 45 minutes or so, counting the minutes, hours, and days…

A pulmonary arterial hypertension (PAH) diagnosis can have a significant impact on someone’s life. Without treatment, a PAH patient’s health can rapidly decline and leave them facing a difficult future. Some may be eligible for organ transplant and are placed on a waiting list with enough time to actually…

I was diagnosed with pulmonary hypertension (PH) at the young age of 4, so I don’t really remember life without it. The tasks and routines associated with PH were a part of my day before I’d even begun elementary school. Because I was so young, I was able to give…

Patient advocacy is a broad term covering many topics, and the concept leaves many confused. Those of us in the pulmonary hypertension (PH) community must educate ourselves about it. In this column, I primarily refer to self-advocacy and briefly touch on systems advocacy. To me, self-advocacy means making my…

Up until age 6, my son Cullen was a healthy little boy. Earaches, wellness checks, and immunizations were the only reasons I took him to the pediatrician. So I was shocked when he began complaining that his heart felt funny and he was short of breath while exercising. Asthma was…

“I wish I could help you. I know how tough pulmonary hypertension is and what you’re going through — there just isn’t enough supply of the antibodies treatment.” That was the gist of what a doctor told me while I was isolating in a California hotel room in January. I…