Columns

The Power of Words

Lately, I have been reflecting on the power of words. It started one sleepless night, as I wondered how often I have thought or spoken the words pulmonary hypertension since my son’s diagnosis. Even after his heart and lung transplant relieved him of that dreadful condition, not a day has…

PH Has Changed Me in Profound Ways

I often hear that I’ve changed since my pulmonary hypertension diagnosis. I constantly speculate about whether this might be true, and then repeatedly realize it’s pretty accurate. Surviving every day with a rare and life-threatening disease like PH takes a toll not only on my body, but also my…

The Mental Wellness Challenges of an Introvert

When my son was diagnosed with pulmonary hypertension (PH), his doctors were proactive in caring for his physical health and forthright about maintaining his mental wellness. He was 8 years old and facing adult-sized concerns and realities. To help process all that was happening, they referred him to a…

The Real Red Band Society

In 2014, my son Cullen received a heart and double-lung transplant after a long battle with pulmonary hypertension (PH). Washington state was home, but for the first four months of recovery, we lived in California, close to the hospital where he received his transplant. Except for an occasional visit,…

I’m Starting to Lose It with Social Distancing

Have y’all had times during this self-quarantine when you’ve lost it? If so, you’re not alone. Last week, my husband was home from work all week. He was feeling achy and had chills for several days, which was far from normal. Thankfully, he did not have a high fever. But…

Creatively Compliant: How My Son Has Managed His Fluid Intake

In a previous column, I shared my son’s battle with weight loss and gain caused by illness. Equally challenging has been his efforts to meet daily water intake goals. How much water a healthy person should drink varies according to height, weight, activity level, and environmental conditions. Helpful online…