Last week, I scrolled through Pinterest on my phone as I was wheeled into the endoscopy suite for a J-tube placement. I was doing everything I could to distract myself. I have worked hard in therapy to come up with coping mechanisms and have learned to keep my mind…
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One of the hardest parts for me about having a serious chronic illness is telling people about my condition. I’m always worried that they will look at me differently. And every time I inform someone new about my diagnosis, I have to relive it. Before my pulmonary hypertension (PH)…
No cure exists for pulmonary hypertension (PH). People often ask, “But isn’t transplant a cure?” PH Awareness Month is an opportunity to explain the frustration that those who are battling this disease feel when faced with this question. I don’t deny that since my son’s heart and double-lung…
When I received my pulmonary hypertension (PH) diagnosis I was in congestive heart failure. Since then, I have been taking diuretics to assist my body in getting rid of excess fluid and to treat my heart failure. Unfortunately, over time, the diuretics have damaged my kidneys. I was diagnosed…
As a child, I always felt uncomfortable when people expressed sadness and fear. I tried to be strong to keep my family from feeling upset. I remember maintaining a brave face during surgeries and interventions to assure my loved ones that I would be OK. People have told…
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…
