I think people in the pulmonary hypertension (PH) community tend to apologize too much. We are so good at it, and we often say we are sorry when it isn’t necessary or even appropriate. It’s a topic we have fumbled with often in the Pulmonary Hypertension News Forums. A…
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].
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Caregivers to loved ones are often metaphorical mountain climbers who begin their journey without prior experience or training. Equipped with the power of love and the persistence of hope, they move forward with all the emotional, mental, and physical strength they can muster. While chased by a diagnosis, caregivers help…
Parents sometimes joke that they wish their child came with an instruction manual. If there were a manual for kids, I would’ve had to toss out my son Cullen’s manual when he was 8. That was the year he was diagnosed with pulmonary hypertension (PH). The PH diagnosis made…
Dr. Sean Wyman, a respected advocate and loved member of the pulmonary hypertension community (PH), passed away in 2018 after a 15-year battle with the rare disease. You can still feel Sean’s compassion and hear his voice through his efforts to educate and encourage others by sharing his PH…
The Walt Disney character Mary Poppins is practically perfect in every way. The film of the same name, based on a series of children’s books, is a lovely fictional story about a hired nanny who meticulously cares for two children. Many admire and respect her, and she has a…
Some say that you can never go home again. I find that such a sad notion, and I recently convinced myself it isn’t true. I traveled to the other side of the country to pay a long overdue visit to my parents and several friends and family members I haven’t…
“The surgery went well, with no complications, and the new heart and lungs are functioning beautifully.” Aug. 7 marks the seven-year anniversary of posting that miraculous update to my son Cullen’s CaringBridge journal. Living without pulmonary hypertension (PH) has undoubtedly changed his life for the better, but Cullen, 21,…
I will turn 50 in October, and I have ignored worsening symptoms alerting me to a possible health concern for many years. I finally decided it was time to face what I was avoiding and schedule a doctor-recommended upper GI endoscopy and colonoscopy. As the anesthesiologist was preparing…
I have read that the heart is the hardest working muscle. If you’ve ever seen an echocardiogram of a heart laboring against pulmonary hypertension (PH), you’ll agree. But anyone who doesn’t give the heart credit for being the strongest muscle has never met a grieving mother. In an email…
I recently dreamed that I was walking toward a hospital room to visit my son, Cullen. A doctor stopped and told me that Cullen had died. I walked away in a state of shock, but then quickly returned in tears and begged for a chance to see him. When I…
Stress was familiar to me long before my son Cullen was diagnosed with pulmonary arterial hypertension (PAH). Bruce Springsteen sings about being “Born to Run,” but when you run, you might trip. I was born to worry about things like that and so much more. Not that I…
Throughout my son Cullen’s pulmonary hypertension and heart-lung transplant journey, it has been my impression that hospitals try to treat the whole person — body, mind, and spirit. Over the past 13 years, he has been treated at four hospitals in two states, and each facility has offered chaplaincy…
Nurses are remarkable people. My respect for them has grown significantly throughout my son’s pulmonary hypertension (PH) and transplant journey. Their job requires important skills, intelligence, patience, persuasiveness, compassion, energy, emotional control, a strong stomach — the list is endless. And I can’t think of a more suitable person to…
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