In defense of the journal
It’s been a rough day. I change into my comfy clothes, pour a cup of tea, prop up my pillows, pull up a cozy blanket, and start to write. Others might open with “Dear…
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 lived in Washington State for 20 years 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 returned to New Jersey in 2023 after her loving husband of almost 28 years passed away.
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, through her column, to share their journey. If you are a caregiver and would like to be interviewed, contact Colleen at [email protected].
Featured Post
Ho no! Christmastime is here again!
“God Rest Ye Merry, Gentlemen” is one of the oldest Christmas carols. The lyrics, which have been altered numerous times to adapt to changes within the English language, are drawn from the Christmas story…
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Patients are losing patience at the medical check-in kiosk
When patients arrive at a medical facility, they often expect to be greeted with a helpful smile and comforting voice, not met by an inanimate object that could add to the complications illness can…
Music deserves a note of thanks
Music is a universal gift given and received by people of all ages, ethnicities, and cultures. Its versatile melodies, rhythms, harmonies, lyrics, and instruments adapt to any person, place, situation, mood, and event. Music…
When faced with a trying situation, my son tries harder
My 25-year-old son Cullen has been trying to deal with trying situations since he was a child. For years he explained to both his parents and medical professionals that something more than asthma or…
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…
How I am coping since my husband passed away
I thought I knew how I grieve. I’ve lost many loved ones over the years, including those in the pulmonary hypertension (PH) and transplant communities. Each death hit my heart with varying…
Answering the call: What emergency responders do, Part 2
Second in a series. Read part one. According to the Online Etymology Dictionary, “emergency” is derived from the Latin word “emergere,” which means to come forth, to rise up and out. That is…
Answering the call: What emergency responders do, Part 1
First in a series. The rare disease community has an abundance of compliant patients and proficient caregivers. We do our best to avoid serious medical emergencies but are wise enough to know…
On Rare Disease Day, let’s raise awareness about caregivers, too
If you can do the following things simultaneously then you are rare! Speak up and listen. Learn while you teach. Trust but also question. Be empathetic and persuasive, serious and lighthearted, gentle and strong.
Why you should focus on patient and caregiver self-care today
Physical, emotional, and mental exhaustion are common symptoms of pulmonary hypertension (PH) and caregiver burnout. Many of us will keep packing on the fatigue until that snowball gets harder and harder to…
Put your heart, or other organs, into National Donor Day
Most people are good. I truly believe we’re better than what we ingest daily from the local, national, or world news. But what often keeps us from proving it is a lack of inspiration…
