Columns

If you are battling a chronic illness, odds are you have also battled health insurance. My son Cullen managed his pulmonary hypertension (PH), received a heart and double-lung transplant, and survived almost six years post-transplant without running into any major health coverage roadblocks. Any issues were quickly resolved with…

Since my recent hospitalization, I am not allowed to drive for a while. This may seem like no big deal to some, but for me, driving is my little bit of freedom; it’s my independence. Usually, I only drive for small distances near my house. Some days, this is…

Lots of people count their steps using a Fitbit device or their phone, but for me it has been a total lifeline.  Being less active during lockdown made me worry that my fitness had declined and that I had generally deconditioned. Putting on a bit of…

It’s challenging to develop healthy coping styles upon receiving a shocking pulmonary hypertension diagnosis. My 8-year-old son, Cullen’s, PH diagnosis was like a magic wand that instantly transformed our family’s lives. For roughly two years we had struggled to find the cause of Cullen’s distress, but once we had an…

“Life is tough, my darling, but so are you.” – Stephanie Bennett-Henry My husband pushed me in my wheelchair through the main hospital entrance. My pulmonary hypertension (PH) medical team wanted me to avoid chaos in the emergency room. I am grateful that he made my health…

“How have you been feeling mentally? How are your anxiety and depression with all that is going on?” Every week when my therapist calls me for our appointments, I am asked how I am doing. Usually I respond sarcastically and say, “Oh, you know, just living the dream!”…

About 14 years ago, our oldest son, Cullen, started showing signs of disease. For two years, we lived with the frustration of not knowing the cause. Finally, we discovered he had idiopathic pulmonary hypertension (PH). Although relieved to finally have a name for his condition, the challenges associated with PH…

Expressing vulnerability has always been difficult for me. I thought that “showing my brave face” would keep others from worrying. I have always been more concerned with how everyone around me was feeling, and never gave myself permission to show worry, sadness, or fear. I focused on the positive if…

The world is re-opening. People are returning to bars, restaurants, and shops. They’re reuniting with loved ones and friends. I’m terrified. I’ve been locked down for over three months, but the last couple of weeks have been the most challenging. The pandemic has been…

“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…

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…

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…