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New Year, Same Chronically Ill Me

Ever since I was diagnosed with pulmonary hypertension (PH) in 2017, I have hated this time of year. I refuse to make any resolutions, and I usually take some time away from social media to avoid looking at everyone else’s personal rebrandings. I’ve given…

Pets Can Help Care for the Caregivers

Three of my family members are very high maintenance. They rely on me for just about everything, and whine if I don’t help them right away. They constantly do things that distract me from my responsibilities and have no sense of personal space. Ours might sound like a toxic relationship,…

Thyroid Disease Played a Prominent Role in My PH Journey

In 19 years of living with pulmonary hypertension (PH), the period of greatest illness I experienced was during my sophomore year in college. It was the only time in college that I was unable to live independently on campus and had to commute from my parents’ home nearby. About four…

A Resolution to Keep Celebrating the Small Things

I was hospitalized following my heart-lung transplant in 2018 One of the biggest emotional burdens was experiencing the passage of time, which was most notably marked by the holidays. Halloween was first, quickly rolling into Thanksgiving, and then Christmas. These were all difficult days spent with my immediate…

My 2021 Reflections: It’s Been a Wild Ride

As another year comes to an end, I reflect on memories from 2021. Since my pulmonary hypertension (PH) diagnosis, I desire reflection more each year. Those of us with rare diseases often get caught up in the mundane moments of being a patient. Whether this means taking handfuls of medications…

Managing My Health Through the Holidays

Like many people, I have always treasured the holidays. The weeks between Thanksgiving and New Year’s feel like a time for joy, community, and celebration. The holidays can also be stressful, but they can be especially devastating for those of us managing a chronic illness. I can remember the years…

A PH Sibling’s Journey From Childhood to Adulthood

Parents of children with pulmonary hypertension (PH) commonly express concern about the emotional and developmental effects on their healthy offspring. They worry about how their healthy children deal with feelings of sadness and fear. They stress over sibling rivalry triggered by feelings of unequal parental attention. And they’re…

The Old Memories of Flying With PH Still Linger

My son had just been diagnosed with severe pulmonary arterial hypertension (PH), and he had a wish — and it involved flying. “I would like to meet George W. Bush, the president of the United States,” said then 8-year-old Cullen, to the surprise of the Make-A-Wish…