Columns

When Doctor Appointments Remind Me of My Diagnosis

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…

Walking the Transplant Tightrope for a Second Chance at Life

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…

What Daily Disease Management Looks Like With PH

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…

Never Stop Being Your Best Advocate With PH

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…

There Is Still Hope for a Failing Heart

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…

The Challenge of Making Friends as an Adult With PH

Most people realize that living with a serious health condition can make it difficult to develop romantic relationships. The difficulty of forming new friendships doesn’t seem to be talked about as often. Making friends as an adult is hard enough without the added complication of a chronic illness…

The Day the Music Lived

The emotions of an 11-year-old girl named Riley take on a life of their own in the 2015 Pixar movie “Inside Out.” In the animated film, the control center of Riley’s brain is headquarters for five emotions portrayed as the characters Joy, Fear, Anger, Disgust, and Sadness. They control…

Nourishing My Body While Living With an Illness

While I cringe a bit at the term, I would definitely consider myself a foodie. Food Network often plays in the background while I work. I was gifted a pasta-maker for Christmas, which I now use weekly, and I’m currently experimenting with sourdough bread recipes. I’ve loved food and everything…

California Couple Shares Their PHenomenal Love Story

A woman driving home from work becomes severely short of breath and dizzy. She pulls over into a “No Parking” area, which draws the attention of a parking enforcement officer. He calls for help, and she is rushed to the hospital. Five days and many tests later, doctors diagnose the…

Ushering in a New Generation of PH Champions

When I checked into urgent care in 2016, I was supposed to be preparing a member of Congress for a summit at the White House. But instead of going to work the next day, I sat in the hospital for nearly two weeks and left with a pulmonary hypertension diagnosis.