As Cullen Turns 21, We Celebrate Another Milestone

Adulting is hard. As children, we look forward to the freedom to make our own decisions, but being responsible for ourselves isn’t always as satisfying as we thought it would be. Even those blessed with a supportive family and friends are still affected by the choices they make.

There are several keys to successful adulting. Some of these include:

• Being able to communicate thoughts and feelings in a mature and coherent manner.
• Having the ability to listen to others, and the patience to reflect on the significance of their message.
• Having well-defined personal goals, values, and instincts that can help guide thoughts and actions.

In November, my son Cullen turns 21. Like many parents, I see Cullen’s life through a filter of love and pride. Even at a young age, Cullen seemed mature for his years, but when his health started to deteriorate, it really became apparent.

At 6, Cullen sensed there was something different happening compared to friends his age. He ran out of breath too easily, and his heart often felt funny or sometimes hurt. With a maturity beyond his years, Cullen repeatedly described these symptoms to doctors and to us.

He never stopped advocating for himself, even when two years of misdiagnoses failed to help him. His insistence that he was getting worse instead of better kept us looking for the problem. Meanwhile, he lived cautiously and was self-limiting his activities to what he felt he could handle.

When he was 8, an echocardiogram and right-heart catheterization confirmed the correct and much more concerning diagnosis of idiopathic pulmonary arterial hypertension (PAH). With it came a lot of heavy decisions and responsibility. Cullen faced them — not alone of course, but to the best of his ability. He tried to understand the seriousness of the disease and the adult-based treatments he would receive.

Two of Cullen’s most difficult challenges that required adult-sized courage were having a central line placed to begin continuous intravenous infusion of the treatment Flolan, and an awareness of something that only adults should have to ponder: his own mortality. Cullen knew from the get-go that PH is an incurable and life-threatening disease.

For five years, he protected and remained attached to his central line and Flolan pump, took multiple oral PH treatments, articulated his symptoms and opinions to his parents and doctors, braved procedures, and self-advocated like an adult PH patient would.

Eventually, Cullen’s health declined, and treatments were no longer helping. His only remaining option was to be listed for a heart and double-lung transplant. Although he was still a minor, it was important to all of us that he was on board with the decision, which he was.

At 14, Cullen received his second chance at life, and now, six years post-transplant, he continues to do everything in his power to protect this precious gift.

Cullen, with his dog, Mellow. (Courtesy of Colleen Steele)

So, what is Cullen most looking forward to from his milestone 21st birthday? He has spent most of his life having little control over his health, so losing control because of alcohol holds little appeal. Cullen’s goals are more music-related.

Some concert venues have a 21-and-over age restriction. Many times over the years Cullen has been excited about a favorite group or performer touring our area only to find out he wasn’t old enough to attend. That will no longer be an obstacle, and he can’t wait to see a show. Unfortunately, due to the pandemic, he will have to.

As his mom and caregiver, I feel emotionally grateful that Cullen is still alive to celebrate his age catching up to his maturity. Adulting is hard, but he has already proven that he can handle it.

An Irish blessing best expresses my wishes for Cullen’s 21st birthday and the many decades of birthdays that I pray will follow:

“May your days be many, and your troubles be few. May all God’s blessings descend upon you. May peace be within you. May your heart be strong. May you find what you’re seeking wherever you roam.”

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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.