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.
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…
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…
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…
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…
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…
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