November is Pulmonary Hypertension Awareness Month. I remember the first November of my son’s diagnosis. My family and I were still in the process of learning about this disease. Awareness to us was explaining to friends and loved ones that my son had a life-threatening, incurable condition. Exposing this…
Do you struggle to prioritize your health when confronted with life’s daily demands? It’s a tough job to balance everything, especially when you’re already exhausted. When living with pulmonary hypertension (PH), life can be messy and unpredictable. I tend to put others first, and my health drops to the…
I have little sympathy for those who exclaim that they don’t like hospitals — no one does! But for many of us, they are an unavoidable part of life. I can understand the inclination to avoid them at all costs, but the day might come when you no longer can.
Happy Halloween! This week, I’m taking you on a journey to a “gross lab.” Yes, that is what it’s called. Four weeks after our son Cullen’s heart and double-lung transplant, we paid our respects to his old organs. Some might consider that morbid, but to us, it was…
The last few months have seemed like a stretch of bad dreams. I’ve felt as if I’ve had little control over my physical health while my medical team has been figuring out its next move. While awaiting medical decisions, my mental health presents an additional…
As I work on my continuing education credits required to maintain my nursing license, I am reminded of how much I miss my days as a nurse. Prior to my diagnosis with pulmonary hypertension (PH), I worked in hospice and palliative care. The transition from nurse to patient…
Advice is like a bag of Halloween candy. You take it home, dump it out on the table, and sort through it. One pile for the good stuff, another to cherry-pick, and one for what you know you will never eat. As a mom and caregiver, I’ve had my fill…
On March 14, 1992, when my husband said, “In sickness and in health,” he had no idea just how important those five words would become. I’m sure that like most couples, we repeated our wedding vows quickly so that we could share that first “married couple” kiss. We were newlyweds,…
“Sometimes that mountain you’ve been climbing is just a grain of sand.” That line is from one of my favorite Carrie Underwood songs, “So Small.” I have listened to this song countless times before procedures, surgeries, and testing, and during hospital stays.
This is probably the hardest column I’ve written to date. It’s about how I deal with thinking about the future. I have been a planner my entire life. Whether it was daydreaming about the color scheme of my wedding when I was a kid, creating a detailed itinerary for trips,…
In last week’s column, I shared how the Make-A-Wish Foundation granted my son Cullen’s prodigious wish to meet President George W. Bush in 2008. To be on the receiving end of this amazing nonprofit organization is extraordinary. The foundation creates adventures that far exceed expectations. To be on the…
Living in the moment feels like an impossible feat while managing a chronic illness. It is hard to keep my mind on the present when so much of my energy is spent planning future appointments, scheduling upcoming tests and procedures, and waiting to hear about previous…
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