Columns

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.

What is better than the smell and taste of a freshly brewed cup of coffee? Maybe a second cup of coffee? Maybe like me, you find comfort in the simple routine of your morning coffee before work, school, taking care of a loved one, or whatever is on your to-do…

I think people in the pulmonary hypertension (PH) community tend to apologize too much. We are so good at it, and we often say we are sorry when it isn’t necessary or even appropriate. It’s a topic we have fumbled with often in the Pulmonary Hypertension News Forums. A…

Parents sometimes joke that they wish their child came with an instruction manual. If there were a manual for kids, I would’ve had to toss out my son Cullen’s manual when he was 8. That was the year he was diagnosed with pulmonary hypertension (PH). The PH diagnosis made…

When we hear the question “Did you pack everything but the kitchen sink?” my family’s answer has always leaned toward “Yes.” Since being diagnosed with pulmonary hypertension (PH) in 1999, my family has never been able to travel lightly. But the efforts we’ve put into traveling have always outweighed the…