I recently went to Washington, D.C., as part of the Pulmonary Hypertension Association’s (PHA) Capitol Hill Day to advocate for the pulmonary hypertension (PH) community and help secure co-sponsorship of the Supplemental Oxygen Access Reform Act (SOAR) and the Safe Step Act. The SOAR Act seeks to reform…
The PHlip-side — Jolie Lizana
Jolie Lizana is a Louisiana woman with a strong sense of hospitality and humor. She was diagnosed 12 years ago with systemic sclerosis, pulmonary hypertension, and heart failure. Jolie advocates for invisible, chronic, and rare diseases, and she is a certified legislative advocate. Her perspective as a former sonographer and EMT breaks barriers between doctors and patients. Jolie volunteers with nonprofits and hosts awareness events. Jolie hopes to bring raw truth and vulnerability to her column.
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Pulmonary hypertension (PH) is a serious and life-threatening disease. There was a time when the hardest part was simply staying alive, getting through each day, and not knowing what came next. But as my health has improved, the challenges have changed. The hardest part for me now isn’t survival.
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…
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…
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…
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…
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.
There’s something truly rewarding about knowing you’ve helped someone. There is no final goal or checklist to accomplish when that happens — it’s an immediate feeling of success and fulfillment! It’s one way that I, along with others in our PH community, know we are doing meaningful work. As…
My rear end is sore from the gurney, my headache is growing roots thanks to the beaming fluorescent lights, and my chest feels no better than it did when I arrived at the emergency room. So why did I come? After being curled up in my blankets at home for…
When pulmonary hypertension (PH) crashed over me, it caused me to mourn the loss of my health, my life’s work, and my dreams. It left me with a crazy mess of grief. When a social worker came to see me at the hospital a few days after my…
As someone living with pulmonary hypertension (PH), I am dedicated to advocating for the needs of the rare disease community. My advocacy efforts span various platforms: patients, healthcare professionals, and the broader public. My work includes continuing my education and collecting resources for everyone in the rare disease community.
Pulmonary hypertension (PH) can feel like a hand is squeezing my lungs, and my arteries are tentacles of fire. Sometimes I feel like a large iron block is sitting atop my heart, squashing it and causing heart failure. The pressure can get intense. This disabled heart of mine is…
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