“There is ebb and flow. Leaving and coming. Flight and fall. Sing and silent. Reaching and reached.” – Ally Condie I am unfamiliar with the author of that quote and her thoughts behind it. But as I prepared to write my one-year anniversary column, it grabbed my attention. The…
Life as a Caregiver - a Column by Colleen Steele
Lately, I have been reflecting on the power of words. It started one sleepless night, as I wondered how often I have thought or spoken the words pulmonary hypertension since my son’s diagnosis. Even after his heart and lung transplant relieved him of that dreadful condition, not a day has…
When my son was diagnosed with pulmonary hypertension (PH), his doctors were proactive in caring for his physical health and forthright about maintaining his mental wellness. He was 8 years old and facing adult-sized concerns and realities. To help process all that was happening, they referred him to a…
In 2014, my son Cullen received a heart and double-lung transplant after a long battle with pulmonary hypertension (PH). Washington state was home, but for the first four months of recovery, we lived in California, close to the hospital where he received his transplant. Except for an occasional visit,…
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…
