Columns

“I know what you’re going through.” For someone who is physically or emotionally hurting, these words often fall short in providing comfort. Although our experiences might be similar, how we get through them may be very different due to many factors, such as personality, values, religion, family, friends, age, economic…

A certain responsibility comes with being diagnosed with a rare disease. Because we know the details of our illnesses best, it is up to us to educate the world about them, so that greater knowledge and investment can be brought to our communities. This leaves me wondering what story I…

“Don’t be afraid to give up the good to go for the great.” — John D. Rockefeller Recently, my husband, Manny, and I made a big life decision by selling our home in Texas and relocating to San Diego. This was always our dream, but we never thought it…

It is strange to be diagnosed with a disability as an adult. I’ve lived with pulmonary hypertension for over four years now. In some ways, it feels like a lifetime — I feel like I can hardly remember pre-PH me — but I have really struggled to get used…

I’m grabbing the megaphone to raise awareness and advocate for pulmonary hypertension (PH). And I invite you to join me. Through advocacy, we’re able to make changes in the United States’ democratic system of governance. I believe change begins with the advocates and the storytellers who share their lived experience…

I’ve been writing, posting to social media, and talking about my son Cullen’s pulmonary hypertension (PH) journey since his diagnosis in 2008. When a heart and double-lung transplant saved him from the disease, I continued to share his story to increase awareness about PH.

My grandma’s favorite story to tell about me is when I was 5 years old and she was staying with my siblings and me while my parents went on a short trip. A home nurse was summoned one morning to take care of my central line and prepare the…

Since my son, Cullen, was diagnosed with pulmonary hypertension (PH) in 2008, I’ve had the pleasure of getting to know many people in the PH community. One thing I’ve seen that a patient and a caregiver have in common is how willing each is to extend emotional support…

As I prepare for a small diagnostic procedure this week, I’m noticing that my anxiety has skyrocketed. This is happening for two reasons. The first is that I have a full memory bank of physically uncomfortable and painful procedures that have made me quite sensitive. My years with illness have…

Living with pulmonary hypertension (PH) is a constant challenge. If I’m not educating myself, I’m educating my family and friends, and at times, even my medical team. Yes, the members of my medical team are experts in medicine, but I am the expert of my own body. Recently, I…

I’ve always considered myself an “on” person, somebody who says yes to the boss or co-worker, friend or relative, thing or event asking for my attention and energy. I’m like a faucet running all the time, never slowing down to make time for myself. Being on all the time fills…

Have you ever met someone and instantly felt like you’ve known them forever? I’ve experienced a rather twisted version of this. In a previous column, I described pulmonary hypertension (PH) as a toxic person rather than a disease. PH had such an immediate impact on my family that by…