Hospital Corners Aren’t so Neat for Struggling Caregivers
For all of you Ms. and Mr. Hospital Corners out there, I see you! No, I don’t see or care how you made your bed today, but I do care about how you’re holding up as caregivers. Due…
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. She lives in Washington state with her husband and two sons. 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 forums 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. It is her ambition to educate and inspire others facing similar challenges.
Featured Post
Good grief, it’s time to return to raising PH awareness
It’s been a while. Do you remember me? I fell silent in June 2023 after sharing a column titled “How I am coping since my husband passed away.” I’m an only child to aging parents, Mom, 86, and…
Read more
The Heart of the Matter: Grappling With the Dangers of Dehydration
I know what I’m about to say will make some of you roll your eyes, but it’s so important. Drink water every day! I’m reminding you because a scary dehydration event recently reminded me. Last Wednesday, my dog…
How PTSD Has Affected My Self-care
My son Cullen is 22, and I’ve been his primary advocate and caregiver for 14 of those years. I’ve seen him through pulmonary hypertension (PH) and heart and double-lung transplant recovery, and I continue to support him…
Why We Decided to Go With the Flo: Our Experience With Flolan for PH
My son Cullen was 8 when he was diagnosed with severe pulmonary hypertension (PH). His cardiologist in Washington state placed Cullen on Tracleer (bosentan) and Revatio (sildenafil). He also referred us to a PH specialist at…
Celebrate Helen Keller Day With Optimism
On this day in 1880, a healthy baby girl named Helen Keller was born. When Helen was 19 months old, a febrile illness with no known cause struck her. Historical biographies speculate she had rubella, scarlet fever, encephalitis, or…
My Sons Share Their Father’s Day Reflections
Experience has taught my husband, Brian, and me that life is what you make it, but you don’t always get to choose the ingredients. We have put a lot of love and other wonderful things into raising our…
I’ve Made a Mental Note to Take Care of My Mental Health
As a co-moderator for the Pulmonary Hypertension News Forums, I’ve encouraged and taken part in many hot topics over the past three years. During that time, I’ve noticed one topic resurfaces often, and it always triggers great responses.
What in the Word? A PH Take on the Post’s ‘Mensa Invitational’
A friend recently emailed me an old list of winners of “The Washington Post Mensa Invitational” that has been circulating the web. According to the rules, participants must take any word from the dictionary, alter it by adding,…
Tips on How to Handle PH and Transplant Baggage
What is baggage? According to Merriam-Webster, it’s one of three things: suitcases, transportable equipment, or intangible things such as feelings and circumstances that get in the way. What kind of baggage do people living with pulmonary hypertension (PH)…
Don’t Picture My Son With PH
They say pictures are worth a thousand words, but sometimes they can be a one-sided conversation. Some photographers tell better stories, but it’s usually up to the observer to gather hints from the picture to understand what’s going…
‘I Think I Can,’ Said the Little Caregiver That Could
I’m an avid reader who, at 50, still considers “The Little Engine That Could” to be one of my favorite books. This timeless, inspirational story and its catchphrase, “I think I can,” date back to a Swedish version…
Hospitals Grow Good People
Graphic artist and children’s book illustrator Mary Engelbreit helped popularize one of my favorite inspirational phrases, “Bloom where you are planted.” Through colorful illustrations and uplifting phrases, she inspires others to find joy, humor, hope, love, and beauty…
