Columns

Working together to improve our experience in waiting rooms

Picture yourself sitting in a waiting room at the doctor’s office, playing the waiting game. You’ve all been there, of course. How do you determine how long is too long to wait? Your answers, unsurprisingly, may vary. In an informal survey, I asked 15 people with pulmonary hypertension (PH)…

Packing PH lessons for my next trip around the sun

Last month, Father Time strapped me to a rocket ship and shot me clear into the wild blue yonder of my fifth decade. That’s right: This geriatric millennial recently turned 40. I’m launching into a new decade and taking my pulmonary hypertension (PH) diagnosis with me. If we’re…

Why our PH journey reminds me of Mother, May I?

Having or caring for someone with pulmonary arterial hypertension (PAH) can feel like the childhood game Mother, May I? The game starts with each participant standing shoulder to shoulder. A designated “mother” arbitrarily calls on a child with orders for movement or action. Before moving, the child must…

How I am coping since my husband passed away

I thought I knew how I grieve. I’ve lost many loved ones over the years, including those in the pulmonary hypertension (PH) and transplant communities. Each death hit my heart with varying degrees of force, but the grieving process was always familiar. I found comfort in being…

Overwhelmed with managing PH? You’re not alone.

Managing life with pulmonary hypertension (PH) and other illnesses can be overwhelming. Juggling appointments, procedures, pharmacy visits, and insurance calls leaves little time to focus on feeling well. Chronic pain, PH symptoms, and medication side effects can also affect my quality of life. Since I was…


A Conversation With Rare Disease Advocates