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…
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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…
For many of us, the new year doesn’t bring hope or promise. Instead, it arrives with a heavy weight, filled with uncertainties that feel more threatening than exciting. We worry about declining health, medical bills burdening our families, and the persistent fear that insurance companies will deny us the…
Just as life seemed to be moving smoothly for me and a new treatment was showing promise, I unexpectedly found myself “on vacation” at my local hospital. For those of us navigating the complicated world of chronic and rare illnesses, these unplanned hospitalizations are sometimes inevitable. Living with a rare…
During the holidays, I love spending time in the kitchen, using all my favorite devices to bake cookies and other treats that remind me of past Christmas celebrations. With a stand mixer, food processor, cookie press, and immersion blender, I feel like I’m starring in my own Food Network cooking…
When I was younger, I created what I call my “time capsule.” I made a point of preserving moments that felt beautiful, thrilling, or special by fully engaging all my senses, while also taking note of my emotions. In those fleeting instances, it felt as if I had frozen time.
A week or two before I had a heart and lung transplant seven years ago, my mom and I had lunch with a friend who was a pulmonary hypertension survivor and had received a transplant two years earlier. She shared with us what there was to look forward to…
When you live with a chronic and complex illness, complications and side effects from the medications to treat it are always lurking around the corner — even in the most stable of times. The more dramatic setbacks of living with pulmonary hypertension (PH) have included things like getting sick…
