The ongoing pandemic means my normal schedule of hospital appointments has been disrupted for more than a year. I have previously written that this makes me increasingly anxious about my physical health. Although I’ve had telephone check-ins with my…
Columns
Can you imagine being denied something that could prolong your life? In a previous column, I interviewed adult pulmonary hypertension (PH) patients who are ineligible for transplant. Their responses were open, honest, and mature. But what if the patient is a child? How do parents cope with that kind…
When my son Cullen was diagnosed with pulmonary hypertension, people often asked, “Can’t he just get a transplant?” As if he could walk into a hospital, request a heart and a pair of lungs, and be taken right into surgery! Determining eligibility for transplant is a complicated process of…
As I sit down to write my column for Bionews, the parent company of this website, I think about you, my readers. While I strive to write about various topics, I hope to touch on ones that people within the pulmonary hypertension (PH) community will find relatable. …
In 2008, when my son Cullen was diagnosed with pulmonary hypertension, I started a health journal on the website CaringBridge. I compare the pages of his medical journey to the opening paragraph of “A Tale of Two Cities” by Charles Dickens: “It was the best of times, it…
I’m often asked, “What is something that makes you happy?” Sometimes it’s by a friend reaching out to support me during a difficult week, or it might be a therapist helping me through a period of depression. Whatever the context, I’ve always struggled to answer it. When I thought…
My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). He spent much of his childhood in the hospital, talking to doctors, answering endless questions, and experiencing one traumatic event after another. It’s no wonder that Cullen and many other pediatric patients are commonly described as wise…
When we think about natural disasters here on Texas’ Gulf Coast, we usually think about hurricanes. But as 2021 took off, we found ourselves dealing with an arctic winter blast instead. Because I am now on continuous oxygen, the weather is making things a bit more difficult…
“Why can’t she just get over it?” It would not surprise me if there were people asking themselves this question about me. Since receiving a heart and double-lung transplant six years ago, my son Cullen no longer has pulmonary hypertension (PH). Despite this dramatic change, I continue to advocate…
The Mayo Clinic describes phantom pain as pain that feels like it’s coming from a body part that’s no longer there. Experts believe these sensations can be real and originate in the spinal cord and brain. But depending on the experience, it can also be diagnosed as a psychological…
Sixteen years ago, I was lying in a hospital bed, unsure just how much my life and my family’s lives were about to be turned upside down. As a nurse, I thought I could be “fixed” and sent home. That was far from my…
According to NASA, the number of exoplanets, or planets beyond our solar system, is in the thousands and rising. Rare diseases are kind of like exoplanets. There are many, but unless you are a medical specialist, scientist, or patient diagnosed with one, you probably are unlikely to know much…
