Note: This column describes the author’s own experiences with intravenous therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I was diagnosed with pulmonary hypertension (PH), my doctors recommended intravenous (IV) therapy rather than oral medications. They explained…
Columns
The last time my mom and I flew together was nearly seven years ago, when I took a medical flight home from Stanford Hospital in California to the Mayo Clinic in Minnesota. That journey happened midway through my eight-month recovery from a heart and lung transplant in 2018. We both…
A few weeks ago, a close friend who also manages a rare disease asked for my thoughts on artificial intelligence (AI) in healthcare. She sounded anxious — AI was suddenly appearing in her medical appointments, and she wasn’t sure what to make of it. This issue has actually been on…
There is a quiet epidemic of loneliness happening in the world. We have replaced effort with ease and lost the health benefits of real human connection. We text instead of talking and share our lives on social media. Emoji hearts, hugs, and thumbs up or down are empty calories that…
Sometimes a news headline rattles you so deeply that you’re still thinking about it nearly two months later. I probably can’t shake this particular headline because I was at the airport when I read the article. Let’s rewind to the week before last Christmas, when I was preparing to fly…
Nothing I’ve done has helped prepare me for the sudden flashbacks to when I was healthy, active, productive, and all those pretty words my body no longer computes. It happens so suddenly — a gut punch, a reminder of the life I used to have. Almost everything about me has…
While settling in for a recent clinic appointment, a nurse reviewed my record and praised me for the breadth of my health history, noting how impressive I was for everything I had survived. This response isn’t uncommon when people learn that I had a heart and lung transplant. My nurse was…
Understanding pulmonary hypertension (PH) can be challenging. It’s a complex, unpredictable disease, and explaining it to others can feel daunting. So I’ve put together a quick explainer that may help. Last year, at the Pulmonary Hypertension Association’s (PHA) Capitol Hill Day, I explained PH to many people while…
If you’ve ever felt like your body has a built-in weather app that predicts cold fronts with an extra side of aches, you’re not alone. Chronic pain is a relentless companion for many, and for those of us in the pulmonary hypertension (PH) community, it can feel like…
My relationship with acceptance, especially regarding my body and sense of self, has always been complicated. Then, a pulmonary hypertension (PH) diagnosis brought an avalanche of changes into my life and forced me to rethink my approach. As a child, my family spent summers in upstate New York, exploring…
Comorbidity. Just seeing that word makes me cringe. It means having two or more coexisting, and often chronic, health conditions. For many of us in the rare disease community, comorbidity means additional struggles, headaches, and heartaches. Additionally, too often, comorbidities become a lens through which others see us. Before my…
Pulmonary hypertension (PH) patients often face a similar issue: wondering where the nearest bathroom is. Since many people with PH take diuretics as a maintenance treatment for heart failure, that means they have to pee. A lot. This can be a funny, frustrating, or sometimes awkward aspect of the…
