I’ll never forget the day I knew something was wrong with my body. It was sending me warnings. The symptoms included increased shortness of breath from minor activities like talking, presyncope, which is the sensation of nearly fainting, heart palpitations, and swelling in my abdomen and lower extremities. I…
Columns
Did you know that since 1995, we have designated Feb. 6 as “Pay a Compliment Day” in the U.S.? Adrienne Koopersmith was inspired to create it when the bus she was on picked up someone who was nowhere near a stop but in obvious need of a ride. Koopersmith…
Living with the physical health challenges that pulmonary hypertension (PH) places on a patient is hard enough, but the disease can also wreak havoc on mental wellness. There really is no opting out of PH mind games when life is the prize you have your eye on. Mortality statistics,…
By the end of my freshman year of college, it had become a bit of a joke that I would never be caught around campus in sweatpants. While my roommates and peers relished the university lifestyle of casual clothing, I was rarely seen in anything other than a fully put-together…
When I walk my dog around my new neighborhood carrying my oxygen, my neighbors seem to look at me like I’m an alien. Many stare and gawk, as if they’re speculating about what my invisible illness might be, since I otherwise appear to be a healthy…
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…
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,…
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…
Following years of slow decline due to pulmonary hypertension (PH), by 2014, my son Cullen was in critical health, and our hopes were fading. Thankfully, a heart and double-lung transplant saved Cullen from the imminent expiration date PH had placed on him. A few months later,…
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…
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…
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…
