In a previous column, I shared my son’s battle with weight loss and gain caused by illness. Equally challenging has been his efforts to meet daily water intake goals. How much water a healthy person should drink varies according to height, weight, activity level, and environmental conditions. Helpful online…
Since Feb. 26, many Christians around the world, including me, have been following the 40 days of Lent. It is a time of fasting and repentance to prepare for Easter. How we practice Lent is a personal choice. Some give up tempting treats or make other positive changes to…
The average person might feel some concern about how they look and feel in the morning. They might be a little self-conscious about how today’s decisions will affect their health tomorrow. But if you are living with pulmonary hypertension (PH), how you look and feel greatly determines how the rest…
Do you need to hear a happy and uplifting human interest story? Here is one about the day my son met the “Say Hey Kid.” Cullen received a heart and double-lung transplant at Lucile Packard Children’s Hospital Stanford, California, at 14 years old because of pulmonary hypertension…
Since no one is talking about it, I decided to write about the new coronavirus. And yes, I am being facetious. I have also laughed at some of the memes circulating on social media. Two of my favorites are the panic room filled with toilet paper and a person on…
Many of us have a tendency to judge ourselves and others based on our accomplishments. A quick scroll through social media proves this point. We are inundated with the presumed successes of others, based on education, career, or extracurricular activities. The pressure of doing well in life can have a…
Risk is an essential part of living and as diverse as the humans who partake in it every day. So, saying I’m not a risk-taker is like claiming I don’t need air to breathe. Living is a precarious journey through success and failures. As babies, we are young explorers crawling…
Year-round, the parent company of this website, BioNews Services, strives to provide pertinent and updated information about complex, rare diseases. Staying current with medical research is a key component of effective self-advocacy, but personal experience is also a gold mine of valuable information and inspiration. BioNews recognizes this by…
National Donor Day in the U.S. was on Feb. 14. However, every day when I look at my son, I feel inspired to raise awareness about the lifesaving benefits of organ, eye, and tissue donation. And what better way to spread awareness is there than sharing Cullen’s transplant story?…
Pulmonary hypertension (PH) is an incurable, life-threatening disease. This reality is a gaping wound that patients and loved ones try to cover and protect with hope. But at some point, we are all forced to peek under the bandage. What do we do when PH starts progressing, treatments stop helping,…
Second in a series. Read part one. Grief and guilt are not easy to express or explain. It has been five years since my son’s heart and double-lung transplant after a lengthy battle with pulmonary hypertension (PH). I am thankful and overjoyed that he has continued to push through…
First in a series. Many pulmonary hypertension (PH) patients and caregivers experience survivor’s guilt. During my son’s battle with PH and the five years since his heart and double-lung transplant, a staggering number of patients have died because of PH and post-transplant complications. Each time I learn of another…
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