Why Can’t I Just ‘Get Over’ My Son’s PH Past?

Why Can’t I Just ‘Get Over’ My Son’s PH Past?
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“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 son Cullen no longer has pulmonary hypertension (PH). Despite this dramatic change, I continue to advocate for PH, and I have even made a career out of it. As a forum moderator and columnist for Pulmonary Hypertension News, it is my job to discuss and write about PH every week.

There have been days when I have questioned why I didn’t leave PH behind with Cullen’s diseased heart and lungs. Then I learned that March 9 is “National Get Over It Day.” According to the holiday website National Today, National Get Over It Day is when people are encouraged to self-reflect and move on from whatever is weighing on them.

PH no longer weighs on me as it did when my son’s organs were still ravaged by the disease. The enormous weight of watching him struggle to breathe and hearing him cry out from chest pain was lifted when Cullen received his transplant.

The weight shifted to helping my son care for this precious gift he was given. We had a lot to learn, and recovery from the surgery was challenging. There have also been battles with rejection and coexisting conditions that developed post-transplant.

I was busy with all of this and pushed PH to the recesses of my mind. But as bullies do, it pushed back, and PH eventually found its way back into my daily thoughts again. Reflection has led to acceptance. My son no longer has PH, but I accept that I will never get over the fact that he had it.

I will not get over just how close PH came to stealing Cullen from me. I still gasp at pictures taken shortly before his transplant. They show an exhausted and frail teenage boy who was running out of time. And the words from his surgeon after the successful transplant still ring in my ears: “Cullen’s old heart and lungs were in bad shape and his heart was barely functioning.”

In July 2014, Cullen was declining rapidly as he waited for the transplant call. (Courtesy of Colleen Steele)

I do not take for granted that Cullen was one of the lucky ones blessed with this second chance at life. But I will never get over the loss of the lungs that helped produce the beautiful sound of my son’s first cry. That the little beat I could feel against me when I first held my baby is now made by the heart of someone else’s child.

I grieve for the parents of my son’s organ donor and for the parts of my son that are no more. I’ve heard it said that grief is something that you never get over. This type of grief and what caused it is no exception.

Survivor’s grief and guilt are another part of PH that is so unforgettable. Cullen and our family will never stop mourning the overwhelming number of children and adults, many who were close friends, who lost their life to PH or from post-transplant complications.

What I also won’t get over is that 13 years after my son’s PH diagnosis, patients of all ages are still battling this disease as hard as my son did. Too many continue to be misdiagnosed with other health conditions and sometimes struggle for years before a doctor reaches a PH diagnosis. More treatments have become available, but side effects continue to challenge quality of life, and none of them are a cure.

Somewhere a child or adult was just diagnosed with PH. The patient and their loved ones are probably feeling scared, confused, and alone. Most likely they had never heard of PH until now and have a lot to learn. The medical terms can sound like a foreign language, and the symptoms can be just as misunderstood.

In their search for answers and compassion, some people will find their way to one of my columns or the PH News Forums. Not getting over PH is worth it if Cullen’s PH and transplant experiences and my experiences as his caregiver can help others on the same path.

On days when remembering and talking about PH feels difficult, I look for inspiration from Ralph Waldo Emerson, who wrote, “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

Instead of putting energy and emotion into getting over PH, I’m using them to help others get through it.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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2 comments

  1. Joanne Sperando says:

    Colleen, I for one, am delighted that you continue your advocacy of PH. Often, when someone receives a transplant, they kind of withdraw from the PH world, which is understandable. They might become transplant advocates, which of course, is needed and helpful too, but I think straddling both is optimal! You’ve got your PH experience and knowledge (forever!) and you’ve been through transplant and all that that means. So complex! Bless you for being a dual-advocate!

    • Colleen Steele says:

      I really appreciate your feedback, Joanne! Thank you so much! There would not have been a transplant had there not been PH. I can’t imagine advocating for one and not the other.

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