If you saw my husband, Manny, on the street, you might think he looks angry or even a little intimidating. With his love for Harleys, T-shirts, and plaid, he fits the biker persona well. But what you can’t see is the immense heart of the man who has been my…
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…
In my 19 years of living with pulmonary hypertension (PH), winters were always the hardest season. Because of the increased spread of communicable diseases and the harsh weather here in Minnesota, it was rare for me to make it through the season without some decline in health. Since my…
Have you ever held back from sharing good news about your health, fearing it might diminish other people’s struggles or come across as bragging? This sentiment may resonate for many of us with pulmonary hypertension (PH), but celebrating our victories is a powerful way to raise awareness about this…
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.
Like many parents in the 1990s, my mom and dad opted to have my siblings and me regularly vaccinated according to the recommended schedule. I’m not sure they thought twice about it. This was common practice among most families we knew in the Midwest and was eventually required at the…
“Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.” — Michael J. Fox For over 10 years, I’ve been navigating life with chronic pain, a silent battle I’ve fought while managing pulmonary hypertension (PH) and…
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…
Whether you’re 5 or 15, back-to-school season can involve all sorts of overwhelming factors when living with pulmonary hypertension (PH) or another complex illness. Along with shopping for school supplies and planning an outfit for school pictures, PH warriors also have to worry about medication management, energy allowance, and…
Heart disease is the leading cause of death for women in the United States. As pulmonary hypertension (PH) progresses, patients may experience heart failure, a form of heart disease in which the heart is unable to keep up with its workload and pump blood to adequately meet the…
A recent e-bike ride I took with my husband, Manny, was quite the learning experience. What began as a pleasant afternoon quickly reminded us of the importance of heat safety, especially for those of us managing pulmonary hypertension (PH). We had enjoyed a light lunch and a couple of…
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