Columns

Since my son Cullen’s diagnosis in 2008, I have imagined pulmonary hypertension (PH) as a toxic person rather than a disease. Like the Grim Reaper, PH is an intimidating figure that wears a hood covering its face with looming darkness. The image never reacts or responds, but provides…

“Where do you see yourself in five years?” This is one of my least favorite questions during job interviews, and I hated it even more when I would catch myself lobbing it at prospective co-workers. Oddly enough, if somebody had asked me that question five…

The rollout of COVID-19 vaccinations has sparked a lot of conversation. Some people feel uncomfortable putting something they consider “unnatural” and that they don’t fully understand into their bodies. But as a chronically ill person, this attitude feels alien. I take…

It doesn’t take long after a pulmonary hypertension (PH) diagnosis to realize the disease will have an influence on the patient, family members, and yes, even the pets. Our furry friends who snuggle with us when we are tired, comfort us when we are feeling down, and appear concerned or…

In the movie “13 Going on 30,” the character Jenna Rink sits in a closet crying on her 13th birthday. Distressed about her birthday celebrations going awry, Jenna longs to skip her teen years and go directly to the age of 30. “I just want to be 30. Thirty,…

Having grown up with a complex diagnosis that includes pulmonary hypertension, I was always interested in the field of healthcare. I still remember being 10 years old and telling people I wanted to be a pediatric anesthesiologist when I grew up. This was because of the anesthesiologists who had been…

Living with pulmonary hypertension (PH) is no easy feat. Unfortunately, frequent hospitalizations are a part of life. No one wants to be hospitalized, especially if previous visits were traumatic.  I dreaded making the call to my PH team after days of uncontrollable nausea, vomiting,…

If you feel like pulmonary hypertension is messing with your mind, you are not alone. Over the years, many have expressed similar concerns.  I have been a member of a Facebook group called “Families of Children with Pulmonary Hypertension” since my son’s 2008 diagnosis, and…

Are you a leader or a follower? Do you work well with routine or spontaneity? Can you muddle through mundane tasks or are you best when challenged with high-pressure situations? Do you like giving advice or prefer being an active listener? When my son Cullen was diagnosed with pulmonary hypertension…

When people ask to hear my story, I always offer the same opening line, “When I was 4 years old, I was diagnosed with a rare heart-lung illness,” as if I did not exist prior to that fated day. In some ways, this feels true. If I have learned anything…

Living with a serious long-term illness can desensitize us to our own suffering. I often find I experience a reality check when I tell other people about my diagnosis and what it means for me, and then hear their reaction. People…

The lives of pulmonary hypertension (PH) patients, transplant recipients, and their caregivers interconnect through our experiences and profound compassion for what we’re all going through. Sharing our journeys is like passing a torch from one person to another, helping to light the way through this dark disease. In an email…