The Real Red Band Society
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…
Life as a Caregiver — Colleen Steele
Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forum moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. Her ambition is to educate and inspire others facing similar challenges and encourage them to share their journey. If you are a caregiver and would like to be interviewed, contact Colleen at [email protected].
Featured Post
I’ve discovered a new tool to avoid triggers: ‘glimmers’
Earth spins at approximately 1,000 miles per hour and orbits the sun at a mind-blowing 67,000 miles per hour. Doesn’t it feel like life on this planet picks up speed each year, as if…
Read more
Creatively Compliant: How My Son Has Managed His Fluid Intake
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…
How My Family Survived Months of Illness, Worry, and Boredom
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…
The Struggle Is Real: Losing and Gaining Weight Due to Illness
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…
When Two Heroes Met: Recalling My Son’s Encounter with a Baseball Legend
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…
Tips for Dealing with Coronavirus: Be Practical and Don’t Panic
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.
Don’t Judge Another’s Journey: The PH Road Is a Rocky One
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…
Battling PH Risk Can Be a Double-edged Sword
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.
Daring to Be Rare by Believing in the Power of Hope
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…
Promoting Organ Donation by Sharing My Son’s Good Fortune
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…
Words of Support for Those Transitioning from Hope to Grief
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…
Survivor’s Guilt from the Perspective of a Grieving Mother, Part 2
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…
