Being a caregiver for a child with pulmonary hypertension (PH) can wreak havoc on one’s emotions on any given day. But during the holiday season, the heartache and stress can make even the strongest person teeter on the edge of an emotional collapse. It…
It was 2 a.m., and I was waiting to have my nose packed for a bleed that had been going on for hours, a result of blood thinners and oxygen that I used to experience from time to time. I remember hoping to get back to my college…
Something unexpected happened while scheduling my next quarterly checkup: I was told my lung specialist is leaving and will no longer be part of my care team for pulmonary hypertension (PH). This caught me a bit off guard. I had gotten to know this particular doctor over the last 20…
“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…
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