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 to swallow pills, but at 8, my son could take them without issue or complaint. It…
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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There is a quiet epidemic of loneliness happening in the world. We have replaced effort with ease and lost the health benefits of real human connection. We text instead of talking and share our lives on social media. Emoji hearts, hugs, and thumbs up or down are empty calories that…
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 miraculous gift. Taking care of new organs is an enormous responsibility. The reality that Cullen would…
When driving to doctors’ appointments for my son Cullen, we often listen to “The Danny Bonaduce & Sarah Morning Show.” They make us laugh, and we enjoy the topics. Last week, we were headed to an appointment when the show asked listeners to “call in and share which profession…
If you are battling a chronic illness, odds are you have also battled health insurance. My son Cullen managed his pulmonary hypertension (PH), received a heart and double-lung transplant, and survived almost six years post-transplant without running into any major health coverage roadblocks. Any issues were quickly resolved with…
It’s challenging to develop healthy coping styles upon receiving a shocking pulmonary hypertension diagnosis. My 8-year-old son, Cullen’s, PH diagnosis was like a magic wand that instantly transformed our family’s lives. For roughly two years we had struggled to find the cause of Cullen’s distress, but once we had an…
About 14 years ago, our oldest son, Cullen, started showing signs of disease. For two years, we lived with the frustration of not knowing the cause. Finally, we discovered he had idiopathic pulmonary hypertension (PH). Although relieved to finally have a name for his condition, the challenges associated with PH…
In last week’s column, I discussed my son Cullen’s transition from pediatric to adult care at a medical center not associated with his previous team. My focus has been on preserving the level and quality of treatment that led to almost six years of post heart and…
It was a bittersweet experience when my parents sold my childhood home. I grew up and left for college, and my parents were moving into the home of their dreams — life was moving forward as it should. But packing up memories and leaving the familiar hallowed halls of my…
Among the many challenges of living with a life-threatening condition are the daily demands it places on both the patient and the caregivers. A life-threatening illness isn’t something one can push to the back of the mind. Every day, people face the need to assess and address myriad symptoms, side…
The lyrics in Natalie Merchant’s song “Wonder” make me think of my son, Cullen: “Newspapers ask intimate questions / Want confessions / They reach into my head / To steal the glory of my story.” Not that there is glory in living with pulmonary hypertension (PH) or receiving a…
We commonly think of change as a new experience. It can be unfamiliar and require effort to come to terms with, but it also can be a repeat of old challenges, forcing you to relive the past. Whether it comes in an old form or new, is welcome or not,…
When my son was diagnosed with pulmonary hypertension, we drove from our home in Washington state to California to seek care from a specialist at Lucile Packard Children’s Hospital Stanford (LPCHS). A social worker put us in contact with the Ronald McDonald House (RMH) at Stanford, where we hoped…
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