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.
Columns
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…
What happens when one still suffers from COVID-19-related symptoms long after infection? Unfortunately, I am one of those people. My medical team is comprised of multiple specialists, along with my primary care doctor. Most of this team is clueless about the long-term effects of the virus, cringing as we…
Have you ever seen the view from the top of the Lincoln Memorial in Washington, D.C.? Maybe you saw the monument during a family or school trip, or perhaps a visit to the National Mall is still on your bucket list? Living in D.C., I sometimes forget how close the…
Dr. Sean Wyman, a respected advocate and loved member of the pulmonary hypertension community (PH), passed away in 2018 after a 15-year battle with the rare disease. You can still feel Sean’s compassion and hear his voice through his efforts to educate and encourage others by sharing his PH…
I recall waking up in a full-body sweat every time I had a nightmare as a child. The nightmare was always the same and involved my two sisters, a kidnapper, and me. In the dream, I’d sprint, screaming and sobbing, after the kidnapper’s car, where my sisters were held captive.
Perfect Caregivers Are Not Real
The Walt Disney character Mary Poppins is practically perfect in every way. The film of the same name, based on a series of children’s books, is a lovely fictional story about a hired nanny who meticulously cares for two children. Many admire and respect her, and she has a…
My doctor called me following my recent MRI and delivered mostly good news: Everything looks stable, and my right ventricle is slightly less enlarged than it was during my last MRI in 2018. However, I came away from the call feeling panicked because of a comment she made…
A Caregiver’s Journey Home
Some say that you can never go home again. I find that such a sad notion, and I recently convinced myself it isn’t true. I traveled to the other side of the country to pay a long overdue visit to my parents and several friends and family members I haven’t…
Recent Posts
- New study links smoking to worse survival outcomes in men with PAH
- PAH cases linked to methamphetamine use surge 93% in 4 years in US: Study
- Accuracy in TV medical dramas is deeply personal to me
- Access to Winrevair expands with new public coverage in Canada
- What I’ve learned in the decade since my pulmonary hypertension diagnosis
