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What I Wish People Knew About My PH Journey

“What’s the one thing you wish people knew about your transplant journey?” It’s one of the most thoughtful and thought-provoking questions I’ve ever been asked. It was posed to me six months after the momentous discharge that followed my traumatic heart-lung transplant. I remember looking up at my friend…

Where My PH Diagnosis and Disability Identity Intersect

I haven’t always identified as disabled, even though I lived with disability long before my initial pulmonary hypertension diagnosis in 2016. Adjusting to life with a chronic illness that affects breathing awakened a connection inside me to disability as part of my identity — one I felt had been…

Turning the Tables on Caregiving

I will turn 50 in October, and I have ignored worsening symptoms alerting me to a possible health concern for many years. I finally decided it was time to face what I was avoiding and schedule a doctor-recommended upper GI endoscopy and colonoscopy. As the anesthesiologist was preparing…

Love Can Make a Broken Heart Feel Strong

I have read that the heart is the hardest working muscle. If you’ve ever seen an echocardiogram of a heart laboring against pulmonary hypertension (PH), you’ll agree. But anyone who doesn’t give the heart credit for being the strongest muscle has never met a grieving mother. In an email…

Always a Mess: Keeping Clean With Chronic Illness

I didn’t truly realize how messy of a person I was until I went to college and spent more than four years living in small spaces with others. Growing up, my room would always become quickly disorganized, but this was typical teenage behavior no different than my older siblings’. Every…

Rewiring My Mind by Focusing on Pride

My mind once seemed wired to focus on parts of me I wish I could change. Most of my life, I struggled to accept my reflection in the mirror. I spent a lot of time hoping for the scars to fade and the fluid retention to dissipate. I tore…

Treatment Cost Worries Make It Harder to Focus on My Health

Living with a chronic illness or rare disease definitely comes with a price tag. There are added expenses related to medical equipment and devices, doctors’ appointments, tests and procedures, and of course, the cost of prescription drugs, which can really pile up month after month. I remember feeling incredibly frustrated…