Columns

Celebrating Donors and the Gift of Time

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…

Hi, PH. Yes, I’m Aware You’re Stressful.

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…

Practicing What I Preach Is Advice Worth Taking

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…

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…