A Mother Shares How Her Son Didn’t Let PH Box Him In

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by Colleen Steele |

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Dr. Sean Wyman, a respected advocate and loved member of the pulmonary hypertension community (PH), passed away in 2018 after a 15-year battle with the rare disease. You can still feel Sean’s compassion and hear his voice through his efforts to educate and encourage others by sharing his PH journey.

PH mother / Pulmonary Hypertension News / Sean poses for a formal photo wearing his white coat.

Sean Wyman began his residency at Grandview Medical Center, Dayton, Ohio, in 2017. (Courtesy of Evan White)

An excellent example of Sean’s advocacy is available for viewing in a Pulmonary Hypertension News Facebook livestream he did in 2017. Listening to him share the details of his diagnosis, treatments, challenges, education, and career is informative and inspiring.

Throughout the video, Sean mentions his mother, Evan White, who remains near and dear to the PH community. I reached out to Evan to ask her about her experience as a PH mom, caregiver, and advocate for Sean.

She was more than happy to answer my questions. “When we speak their names, they live. It’s when we stop, they die,” Evan noted on behalf of all parents who have lost a child.

PH mother / Pulmonary Hypertension News / Sean and Evan pose for a photo at Sean's white coat ceremony.

Evan proudly attends Sean’s white coat ceremony on Aug. 11, 2012. (Courtesy of Evan White)

Sean and Evan went on vacation in Colorado for his 19th birthday, but it turned into a traumatic experience.

Evan took a very ill Sean to the hospital, where they quickly determined he was in severe tachycardia. Evan recalls they gave him medication to slow it down, and although it usually helps within two minutes, it took 45, resulting in immediate hospitalization.

“The cardiologist did a full heart catheterization and didn’t understand what was happening,” Evan shared. “A pulmonologist brought onto the case diagnosed it as PH.” Evan hadn’t heard of the rare disease until that moment.

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Sean was an adult when diagnosed, so I was curious how much Evan could advocate for him.

“I was Sean’s eyes and ears,” Evan wrote. “Every decision he made, I offered information and my opinion, but I could not make any medical decisions for him. I was his designated person but would only be involved in direct care if he could not speak his wishes.”

Evan advises other parents who find themselves in her shoes, “Breathe, and don’t freak out. Go to reliable sources online, like the Pulmonary Hypertension Association, and find a PH doctor. It’s a whole new world, but manageable!”

Doctors gave Sean a life expectancy of two years, which he spent playing video games. After beating the odds, he wasn’t willing to sit around any longer.

Evan helped with his efforts. “He got up out of the chair, and I literally threw the gaming system out the second-story window. He waited out his death sentence, and when the time had passed, he got up and never looked back!”

What Sean did with the rest of his life is nothing short of amazing. He finished high school and kept going right into medical school.

PH presented many challenges and delays in Sean’s educational journey, but he didn’t give up.

PH mother / Pulmonary Hypertension News / Sean, dressed formally, stands on stage and receives his white coat.

Sean (front, center) received his white coat as a medical student on Aug. 11, 2012. (Courtesy of Evan White)

He centered his capstone project around PH and eventually completed his Master of Science in Medical Science (MSMS) program. Sean attended medical school at the same campus where he completed his MSMS. It helped that his school knew his history, needs, and what to do if he had a medical emergency. Evan felt confident he could complete the program.

When he graduated and began his residency in 2017, Sean’s PH was worsening. In his eighth month, he stepped back to take care of his health. Although he didn’t return full time to the program, he still worked at the hospital and clinic.

Evan referred to herself as Sean’s cheer squad.

“I was there when his health declined, helping him to get back up and go on,” Evan wrote.

When her husband died from brain cancer, Evan shared that Sean forged on with school while emotionally supporting her.

“We were a team!”

PH mother / Pulmonary Hypertension News / Cullen tosses sticky electrodes in the hospital while wearing a backpack and looking out the window.

Wearing his backpack containing Flolan (epoprostenol) and milrinone, Cullen tosses electrodes at the clinic ceiling in August 2014. (Courtesy of Colleen Steele)

Sean and Evan also teamed up to support other PHers. In 2014, my son, Cullen, was on the transplant list and rapidly declining. Evan stirred up fun mischief by telling Cullen that Sean liked to toss sticky electrodes at the ceiling during long waits at the clinic.

PH mother / Pulmonary Hypertension News / A light in a doctor's office covered in sticky electrodes.

Sean sends Cullen a picture of a face he made using sticky electrodes, September 2014. (Courtesy of Colleen Steele)

Cullen couldn’t wait to try it and swap pictures of his electrode artwork with Sean.

They never got to meet in person, but in 2016, I met Sean at a memorial for a close PH friend. I found Sean to be true to his reputation — kind, compassionate, and genuinely dedicated to the PH community.

When Sean passed away, it was the worst day of Evan’s life.

“Sean was the wonder-kid of PH; he defied so many odds,” wrote Evan. “He became such an advocate and leader in the PH community. He looked death and extreme health issues in the face and lived and thrived.”

Evan hopes that “Lips Painted Blue,” an animated series produced by Sean, will continue to help explain PH to kids.

“I also hope his determination to not live within a box inspires people to reach for their stars,” Evan concluded.

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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.

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