Welcoming my son as the newest PH News Forums moderator

There are two sides to every story.

For six years, as both a forums moderator and columnist for Pulmonary Hypertension News, I have shared my son’s pulmonary hypertension (PH) and transplant story from my perspective as a caregiver.

I’m excited to announce that you can now read this story from the patient’s perspective in the PH News Forums.

My son Cullen Steele, 25, has been hired to work as a forums moderator alongside Jen Cueva and me.

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Where the journey began

As a child, Cullen struggled for two years with symptoms doctors thought were caused by asthma, croup, or anxiety. In 2008, after many exams, tests, and a right heart catheterization, Cullen was diagnosed with idiopathic pulmonary arterial hypertension.

He responded well to Flolan (epoprostenol GM), Revatio (sildenafil citrate), Tracleer (bosentan), and a combination of other PH treatments such as beta blockers and diuretics, but five years later, his health declined to the point that he couldn’t recover. A transplant was his only hope to save his life.

On Aug. 7, Cullen celebrated 11 years since his heart and double-lung transplant. He has survived, but not without struggle.

A week after this lifesaving surgery, an immunosuppressant caused a rare condition, posterior reversible encephalopathy syndrome, which gave him seizures and debilitating migraines. He switched to a different immunosuppressant and, a few months later, completely recovered.

He battled bronchiolitis obliterans (scarring and inflammation), which can lead to chronic organ rejection, and pushed through extracorporeal photopheresis treatments to successfully slow its progression.

Cullen understands what it’s like to put life on hold because of health struggles, and how patience and perseverance can help him achieve goals in his education (such as graduation), travel, and career.

But he’s also painfully aware, since the deaths of four of his closest PH and transplant friends, that not everyone has had or will have a chance at the life experiences they hoped for. He does his best to honor their memory by living life to the fullest.

Where the journey has taken Cullen, and where he’s headed

Cullen Steele is ready to start his senior year at Immaculata University. (Photo by Colleen Steele)

Cullen is a senior at Immaculata University in Pennsylvania, double-majoring in social work and sociology, with a minor in psychology. He plans to continue his education with a master’s degree in social work and eventually become a clinical transplant social worker.

As a forums moderator, Cullen will offer support, understanding, and guidance by sharing what he’s experienced and learned as a PH patient, organ transplant recipient, and college student focused on social work. I asked him to elaborate.

“I know what it’s like to live with a rare disease and receive a transplant as a pediatric patient, and the difficulties and challenges of moving through care as you get older,” Cullen shared.

He emphasized how well he understands the daily challenges that patients of all ages face, having grown up dealing with symptoms, side effects, and all that’s involved in trying to stay well, or at least stable.

Thank you for the warm welcome

“Everyone — from the Bionews communities, employees, and staff, to the PH News Forums members — has been extremely welcoming, and I look forward to getting to know everyone,” Cullen said.

Kevin Schaefer, associate director of community content and SMA News Today columnist, is looking forward to Cullen’s contributions.

“Working in the digital health space, it’s a privilege for me to work with people from multiple rare disease communities. I live with spinal muscular atrophy, but I continually learn new things every day about people with other conditions, and I help them build their communities,” Schaefer said. “With Cullen, it’s great to see him want to advocate for the PH community, and to draw from his experiences with PH and transplant to help others.”

Cueva, who’s also a columnist for Pulmonary Hypertension News, added, “Many of us already feel like we know Cullen through his mom, our kind and nurturing moderator, Colleen Steele. Now we get the privilege of hearing directly from this once ‘mysterious’ young man as he steps into the role of co-moderator.”

She then offered her opinion of Cullen and how she thinks he will be an asset to the PH forums.

“Cullen brings a unique perspective, having navigated childhood with PH, the challenges of transplant preparation, and now life as a college student post-transplant,” she said. “His journey gives him wisdom and insight that our community will truly appreciate. Though still young, Cullen has long been described as an ‘old soul’ through his mother’s stories — and now we finally get to see that for ourselves. I’m grateful he’s joining us and excited to see the conversations and connections he helps foster.”

I’ll always be Cullen’s advocate, but my role as caregiver has dwindled over the years. Cullen endured a lot as a child but has developed an inner strength, calm demeanor, intelligence, and quick wit from the experiences. He’s an independent, responsible, caring adult, all of which will be an asset to the PH forums. I’m very proud of him!

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.