Survivor’s Guilt from the Perspective of a Grieving Mother, Part 2
Second in a series. Read part one. Grief and guilt are not easy to express or explain. It has been five years since my son’s heart and double-lung transplant after a lengthy battle…
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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Battling the exhaustion that comes with caregiver stress syndrome
I’m tired of being lonely, and I’m lonely because I’m tired. The best time to write about this would have been July 11 for Cheer Up the Lonely Day, but that opportunity came…
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Survivor’s Guilt from the Perspective of a Grieving Mother, Part 1
First in a series. Many pulmonary hypertension (PH) patients and caregivers experience survivor’s guilt. During my son’s battle with PH and the five years since his heart and double-lung transplant, a staggering number…
Waiting Room Warriors Battle Worry and Fear
It is said that good things come to those who wait. But when you are waiting for a loved one to get out of surgery, patience has nothing to do with the outcome. Neither…
Carrying Hope from One Decade to the Next
Over the past decade, my son and our family have been through an intense journey from pulmonary hypertension (PH) to transplant. Most of the big, scary, sad, joyful, and incredible moments were squeezed into…
Honoring the Nurses Who Have Taken Care of My Son During His PH Journey
I recently read that the World Health Organization has declared 2020 as the Year of the Nurse and the Midwife. In honor of the 200th anniversary of Florence Nightingale’s birth, I hope…
Performing Acts of Kindness During the Season of Goodwill and Beyond
In my previous column, I encouraged those who are celebrating Christmas to gift themselves with the feeling of peace this holiday season. However, you don’t have to be a Christian to welcome peace…
Allow Yourself to Feel Peace, Not Panic This Christmas
When I was a child, I wrote in a journal that my favorite part about Christmas was the feeling it created. It’s not just the joy of holiday lights and carols, the peace and…
The Healing Power of Laughter
It is said that laughter is the best medicine. My son’s battle with pulmonary hypertension (PH) and post-transplant struggles made me a believer. However, the humor behind the laughter has often been gross,…
Sharing Hope and Expressing Gratitude for Our PHamily
As Pulmonary Hypertension Awareness Month draws to a close, the complexities of this disease have been exemplified by the sharing of personal battles. Our community has cried out in memory of those who…
Living Life Focused on Quality, Not Quantity
Parents sometimes view birthdays, milestones, and even achievements as bittersweet. Witnessing a child mature and grow brings joy, but sentimentality tends to mix with the happiness. Many a parent has wished life would slow…
Responding to Questions About Transplant as a ‘Cure’ for PH
No cure exists for pulmonary hypertension (PH). People often ask, “But isn’t transplant a cure?” PH Awareness Month is an opportunity to explain the frustration that those who are battling this disease feel…
Effortless Ways to Spread PH Awareness This November
November is Pulmonary Hypertension Awareness Month. I remember the first November of my son’s diagnosis. My family and I were still in the process of learning about this disease. Awareness to us was…
