Article by Colleen Steele
Posted on June 2, 2014
My name is Colleen Steele and I was an ordinary person. I held the titles of wife, mother, daughter, daughter-in-law, sister-in-law, friend, co-worker and acquaintance with the ease of the ordinary.
I have two boys, Cullen and Aidan. Skyler, the Verzosa’s oldest son, is in my oldest son’s class, but he also once played on a soccer team with him. It was through sports that our families bonded. Our boys were awesome on the field and it was a joy to watch them play. Then as fast as you can kick a ball, life started to change for my family. Cullen began to fatigue easily and one day while in the process of making a goal, he sat down in the middle of the field and refused to move. Clutching his chest and gasping for air my husband and I suggested to our presumably healthy son to shake it off and keep going! Fast forward another month or so when this healthy son of ours was diagnosed with Long QT Syndrome which is a heart rhythm disorder that causes fast and chaotic heartbeats. This can cause fainting spells and possibly even sudden death. The good news was that medication could help control his symptoms, the bad news, which was the worst we thought we would ever hear, was that Cullen would never be able to play sports again.
I was devastated, my routine was disrupted and I was already starting to feel a little less ordinary. My vocation as mother was being challenged as I tried to help my son cope with losing his title of teammate.
Never again would I ask, “How much worse can it get”? Instead of on the soccer field Cullen was often found clutching his chest and gasping for air in the middle of the school hallway. It took almost two years to diagnose him with the worst of his two diseases. In the Spring of 2008 after a heart catheterization, I was told that my oldest son has PH (Pulmonary Hypertension) which is a type of high blood pressure that affects the arteries in the lungs and the right side of the heart. It begins when tiny arteries in the lungs and capillaries become narrowed, blocked or destroyed. This makes it harder for blood to flow through the lungs, and raises pressure within the lungs’ arteries. As the pressure builds, the heart’s lower right chamber must work harder to pump blood through the lungs. By the time Cullen was diagnosed the right side of his heart was already severely enlarged and his pressures were through the roof. There is no cure for PH and it is life threatening. My anxiety over Cullen losing his freedom to play sports was now replaced with the fear of him losing his life.
Thanks to many oral and one continuous IV medication, Cullen has survived over the past 5 years through excellent medical care and strengthened by the love, prayers and support from not only family and friends, but from complete strangers. Diagnosed at age 8 he has fought long and hard but now at the age of 14 he has gone into heart failure. Cullen has been on the heart and lung transplant list since August 30, 2013.
No, I am no longer ordinary. I learned in the cruelest of ways that I had been taking life for granted. All of my titles now come with a stronger desire to live and love in a more meaningful way, and at moments in which I fail, it comes with much greater pain and regret. Routine is not a part of my life any longer. Even while attempting to write this introduction I willingly let go of my train of thought to hug Cullen and give him my full attention.
I was touched when Therese and Dr. Jude Verzosa asked me to be a guest columnist for this website. They are hopeful that telling Cullen’s story will empower others. Five years ago I would have never titled this, “Empowered by PH,” but as I contemplate what I might share with you in the future, it is with some resistance that I recognize that yes, there have been ways in which this diagnosis has empowered not only the Steele family, but those whose lives we have come in contact with over the years. My hope is that I empower you to a way of life that is less ordinary and much more meaningful.
Learn more about Pulmonary Hypertension at www.phassociation.org.