It Takes All Types to Be a Caregiver
Are you a leader or a follower? Do you work well with routine or spontaneity? Can you muddle through mundane tasks or are you best when challenged with high-pressure situations? Do you like giving…
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…
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Eli’s Long Journey to a Double-lung Transplant
The lives of pulmonary hypertension (PH) patients, transplant recipients, and their caregivers interconnect through our experiences and profound compassion for what we’re all going through. Sharing our journeys is like passing a torch from…
My Son Wanted More Control Over What He Could Do
After receiving a heart and double-lung transplant in 2014, my son Cullen no longer has pulmonary hypertension (PH). Since then, he has been focused on protecting those precious organs. When asked about his PH…
Our Son’s PH Journey Helped Me Appreciate My Husband More
I view marriage in a very spiritual and traditional way. It is one of the seven sacraments of my Catholic faith, and legally, it unites two people as partners in a…
Mothers of Children With PH Share Their Experiences With Transplant Ineligibility
Can you imagine being denied something that could prolong your life? In a previous column, I interviewed adult pulmonary hypertension (PH) patients who are ineligible for transplant. Their responses were open, honest, and…
Adult PH Patients Share Their Experiences With Transplant Ineligibility
When my son Cullen was diagnosed with pulmonary hypertension, people often asked, “Can’t he just get a transplant?” As if he could walk into a hospital, request a heart and a pair of lungs,…
Surviving a PH Paradox Is a Tale Worth Telling
In 2008, when my son Cullen was diagnosed with pulmonary hypertension, I started a health journal on the website CaringBridge. I compare the pages of his medical journey to the opening paragraph of…
PH Made My Son Wise Beyond His Fears
My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). He spent much of his childhood in the hospital, talking to doctors, answering endless questions, and experiencing one traumatic event after…
Why Can’t I Just ‘Get Over’ My Son’s PH Past?
“Why can’t she just get over it?” It would not surprise me if there were people asking themselves this question about me. Since receiving a heart and double-lung transplant six years ago, my…
‘Phantom PH’ Haunts My Son Long After His Transplant
The Mayo Clinic describes phantom pain as pain that feels like it’s coming from a body part that’s no longer there. Experts believe these sensations can be real and originate in the spinal…
Let’s Learn Something New for Rare Disease Day 2021
According to NASA, the number of exoplanets, or planets beyond our solar system, is in the thousands and rising. Rare diseases are kind of like exoplanets. There are many, but unless you are…
A Positive Perspective on Gaming and Your Health
I have read articles claiming that playing video games excessively can increase the risk of health problems. Instead, they encourage children to go outside and play, and adults to hit the gym. That sounds…
