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Stress Is Piling On, Which Exacerbates PH Symptoms

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” – Matthew 6:34 I’m noticing that my pulmonary hypertension symptoms are raging throughout my body. For those who are unaware, stress can exacerbate PH and its symptoms. For…

My Son Is Taking Over His Own Care Management

In last week’s column, I discussed my son Cullen’s transition from pediatric to adult care at a medical center not associated with his previous team. My focus has been on preserving the level and quality of treatment that led to almost six years of post heart and…

I’m Not ‘Lazy,’ I’m Sick

One of the hardest parts of having chronic health problems is the guilt. Many people struggling with complex conditions are branded “lazy.” And sometimes we even brand ourselves. Before I was diagnosed I was always exhausted, had very little energy, and would often take naps in…

The Three Words That I Find Most Difficult to Say

If I asked you which three words you find most difficult, how would you answer? Some may say, “I love you.“ Others may say, “there’s no cure.” But “I need help” are the three most difficult words for me to say, maybe because I’ve never been one to ask…

How to Survive a Medical Move

It was a bittersweet experience when my parents sold my childhood home. I grew up and left for college, and my parents were moving into the home of their dreams — life was moving forward as it should. But packing up memories and leaving the familiar hallowed halls of my…

It’s Important to Be Your Own Health Advocate

Before I got sick I thought doctors knew everything. I thought doctors would know exactly what to do if I was ever unwell, and that I could just mindlessly follow their advice. My experience with chronic illness couldn’t be more different. I remember the first time…

How to Become Obsessed with Survival

Among the many challenges of living with a life-threatening condition are the daily demands it places on both the patient and the caregivers. A life-threatening illness isn’t something one can push to the back of the mind. Every day, people face the need to assess and address myriad symptoms, side…

How COVID-19 Is Shining a Light on Ableism

Society doesn’t make it easy for people with disabilities and health conditions, including in the workplace. Historically, people with disabilities have struggled to hold down jobs. People with pulmonary hypertension (PH) rarely work full time, as it can be physically…

Tips for Battling Bronchitis When You Have PH

I attempt to take a deep breath, but tightness squeezes my chest. Pain follows, as if someone is crushing not only my lungs but my ribs, too. I woke up the Friday before Memorial Day to this overwhelming yet familiar scenario. Because of pulmonary hypertension (PH), I also battle…