Last weekend, I woke up with a stabbing pain coming from the site of my jejunal feeding tube. My tube has caused pain and countless infections over the past three months. I’ve been told to “give it time.” I have cried and…
Columns
It is said that laughter is the best medicine. My son’s battle with pulmonary hypertension (PH) and post-transplant struggles made me a believer. However, the humor behind the laughter has often been gross, silly, a bit dark, and sometimes a little off-color. I remember the first time Cullen fell…
As Pulmonary Hypertension Awareness Month draws to a close, the complexities of this disease have been exemplified by the sharing of personal battles. Our community has cried out in memory of those who have died to raise awareness of pulmonary hypertension (PH) as a life-threatening condition. We have explained…
I often stare at myself in the mirror and do not recognize the reflection staring back. I see a body that is so different from the one I had five years ago. I see a chest and a torso covered in scars from drainage tubes,…
Thanksgiving is almost here, y’all. Scroll through any social media channel and you’ll see people sharing their thoughts on gratitude. Daily reflection on the things I am grateful for is important to me. I keep a gratitude journal on my nightstand. While writing this column, an…
Parents sometimes view birthdays, milestones, and even achievements as bittersweet. Witnessing a child mature and grow brings joy, but sentimentality tends to mix with the happiness. Many a parent has wished life would slow down so that they could enjoy the childhood of their offspring just a little longer. I…
November is Pulmonary Hypertension Awareness Month, a good time to share a little more about my journey with y’all. My hope is that you will tell your stories and generate awareness about pulmonary hypertension (PH) within your communities. I was diagnosed in 2005. Because of my nursing background,…
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…
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…
