Don’t Judge Another’s Journey: The PH Road Is a Rocky One

Colleen Steele avatar

by Colleen Steele |

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Many of us have a tendency to judge ourselves and others based on our accomplishments. A quick scroll through social media proves this point. We are inundated with the presumed successes of others, based on education, career, or extracurricular activities.

The pressure of doing well in life can have a detrimental effect on the human psyche, but more so when we are challenged with poor health. This was one of many difficult lessons learned when my son was diagnosed with pulmonary hypertension (PH).

Cullen was born healthy. For eight years, my intelligent and athletic boy excelled at school and sports. He had many friends and enjoyed every moment that his young life offered him.

When he became symptomatic with difficulty breathing at age 6, I was worried but not discouraged. It was most likely asthma — a bump in the road that would occasionally slow him down but not put the brakes on his future.

However, his health declined in the next two years, as did his stamina. His athletic ability deteriorated and school became a struggle. When he wanted to run, he collapsed. When he tried to study, he would get tired and lose focus. By the time Cullen was 8, he seemed very different compared to other boys his age.

The disappointment was soon replaced with fear. Asthma was ruled out, and we were told he had a disease that was not only life-changing but life-threatening. I no longer cared what the future had in store for Cullen, I just wanted him to be in it.

The hope I had for my son was no longer influenced by how well he was doing in school, but how well he was responding to PH treatments. Instead of being excited by his ability on the soccer or baseball fields, I was thrilled if he could get through a day without supplemental oxygen.

But when Cullen’s health stabilized thanks to IV therapy and oral medications, I began to want more for him again. Soon I learned another lesson: PH treatments were improving his quality of life, but that quality would always be different from his peers.

What would also be different was his PH journey. I discovered that having the same disease as someone else does not mean you will share the same experiences.

A treatment that works well for one may not be as effective for another. Some patients manage to attend school or work, and others struggle to get out of bed in the morning. Some people decline rapidly, and others continue battling PH from childhood into adulthood.

As I mentioned in a previous column, risk is also a big factor. Patients and/or caregivers must decide what chances they are willing to take on treatments and procedures, and to what extent they are willing to battle.

When feeling frightened or inspired by another’s journey, it is prudent to pay attention to the diverse circumstances. Realize that there might be coexisting conditions involved, different obstacles at play, and priorities, faith, and values being considered that are not our own. Comparing can be educational, but judging is harmful to yourself and to others. Sharing stories should be about consoling, supporting, and encouraging one another.

Cullen’s PH journey eventually led him to a heart and double-lung transplant. “Prepare for the worst, but hope for the best” was a common theme I heard from those who received transplants before him. It made sense but comparing his recovery to theirs would not. That road is a rocky one and there is no right or wrong way to travel it.

If your journey leads to transplant, understand that your healing process will be unique and so will your approach to life moving forward. Listen to your body, move at your own pace, and create your own path. Living life to the fullest means different things to different people. Do what makes you feel happy and content. That is the best way to honor the memory of your donor.

Throughout Cullen’s PH and transplant journey, he has taught me the value of achieving goals through patience and perseverance. He also has taught me to appreciate the bravery involved in accepting one’s limitations.

I think the words of Eleanor Roosevelt best describe Cullen’s experience with PH and his post-transplant life: “In the long run, we shape our lives, and we shape ourselves. The process never ends until we die. And the choices we make are ultimately our own responsibility.”


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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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