As Cullen Turns 21, We Celebrate Another Milestone
Adulting is hard. As children, we look forward to the freedom to make our own decisions, but being responsible for ourselves isn’t always as satisfying as we thought it would be. Even those blessed…
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
Welcoming my son as the newest PH News Forums moderator
There are two sides to every story. For six years, as both a forums moderator and columnist for Pulmonary Hypertension News, I have shared my son’s pulmonary hypertension (PH) and transplant…
Read more
Finding Balance Between Optimism and Pessimism
There are times in life when I believe it is necessary to sit on the fence between optimism and pessimism. A pulmonary hypertension (PH) diagnosis and the battle that follows is one of those…
30 Days to Be Thankful and Aware
November is a special month for many. It is a time to gather with friends and family, and share a meal, memories, current events, and hope for the future. Now is the season for…
People With Different Rare Diseases Share Common Struggles
Second in a series. Read part one. In last week’s column, I shared the inspirational story of Cassidy Huff. Cassidy and my son Cullen became friends through the Make-A-Wish Foundation 12…
Cassidy Huff Doesn’t Let Expectations Get in the Way of Finding Joy
First in a series. Those in the pulmonary hypertension (PH) community often refer to each other as PHamily. They don’t live under the same roof, but they do have a strong understanding of what…
Take Care of the Aging Caregiver
Why do some people look younger the older they get? Not me! I turned 49 yesterday, but the woman in the mirror looks much older. I recently read an article that compared pictures of…
Making the Difficult Decision Not to Attend a Funeral
“Many have credited my husband, Brian, and me as the sturdy trunk supporting our little family tree. But a tree is only as strong as its roots, and ours are as strong as they…
Maintaining a Healthy Relationship Between Doctor and Patient
One-sided relationships are unhealthy, so why have one with your doctor? It’s important for both patient and doctor to be committed to establishing an open, honest, and respectful rapport. From pediatric care to adult…
Creating Your Own Recipe for Lemonade
When my son Cullen was diagnosed with pulmonary hypertension (PH), my husband and I would have gone to the ends of the earth to help him fight it. When asked if we would be…
Creating Space Between Peace and Anxiety
Have you ever nodded off at an inappropriate time? For a moment, your body gives in to fatigue. Your heavy eyelids begin to droop, and you start to ease into a peaceful slumber. It’s…
Medication Compliance and Patient Advocacy Are Big Pills to Swallow
Learning how to take medications can be a hard lesson for children, but my son Cullen managed it like a champ when he was diagnosed with pulmonary hypertension (PH). I know adults who struggle…
Experiencing the Other Side of Organ Donation
On Aug. 7, my son Cullen celebrated his six-year anniversary of having a heart and double-lung transplant. In last year’s anniversary column, I shared the joys and struggles that come with this…
