Columns

Reminding Myself That I Am So Much More Than PH

Hey, y’all, I’m Jen. I love people. I enjoy talking, writing, and cooking. Coffee shops and food are my jam. I admire my family and friends. Listening to live music or being near the water helps keep me balanced. But pulmonary hypertension (PH) will creep up when least expected, attempting…

Changing the Pace in Life and Work With Chronic Illness

When I was younger, my life with pulmonary hypertension (PH) was busy. I was active in dance, softball, and the arts. I was an engaged student and had an active social life. We took family trips and made many memories. I lived a full childhood in tandem with my progressing…

Why Setting Boundaries Is Essential When Dealing With PH

Do you struggle to create boundaries to protect your health? Do others say that you are using your chronic illness as an excuse? If so, you are not alone. Learning to say no and creating boundaries have always been a struggle for me. But after being diagnosed with pulmonary hypertension…

My Son Shares Words of Wisdom on His 7-year Transplant Anniversary

“The surgery went well, with no complications, and the new heart and lungs are functioning beautifully.” Aug. 7 marks the seven-year anniversary of posting that miraculous update to my son Cullen’s CaringBridge journal. Living without pulmonary hypertension (PH) has undoubtedly changed his life for the better, but Cullen, 21,…

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…