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…
Columns
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…
I appreciate the camaraderie among caregivers that I have experienced. We find understanding, support, and comfort from one another, no matter what illness we are dealing with or the age of our patients. Caregiving can be an emotional, challenging, and rewarding responsibility, and that reality alone is what unites us.
The memory is impeccably clear in my mind, tied up tightly in the damp smell of chlorine. I’m sitting on a bench in a humid concrete room while my peers splash boisterously around in the pool. They in their swimsuits, me in the required gym uniform. They, “normal.” Me, “the…
Some days, as I catch a glimpse of the woman in the mirror, I find the reflection unrecognizable. The dark, weary circles around the eyes, the protruding cheek and collarbones, the pale, bluish skin — that’s me. This can leave me startled and discontented, with tears running down my face.
