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Steve’s story

PAH patient, Steve, and his wife smiling together at a rocky beach

Steve had just entered his 60s and was enjoying a full and active life. He was married, had three beautiful daughters, and worked as an administrator at a local university.

But he’d also started having scary health episodes where his heart started racing and he couldn’t catch his breath.

Medical professionals had written his episodes off as anxiety, but Steve knew there was something else going on.

Finally, he found a doctor that listened to his symptoms and referred him to specialists, where he was properly diagnosed with pulmonary arterial hypertension (PAH).

This is Steve’s story about
how he outnumbered PAH.

PAH patient, Steve, smiling in a red and gold theater costume outdoors holding a lute

Learning to live with PAH

Steve enjoyed acting in his younger years, but life had gotten in the way. After a long break, he was excited about returning to a hobby he loved.

But after his PAH diagnosis, Steve thought he’d never see the stage again. He wasn’t sure he could handle the physical demands of acting.

So Steve turned to his PAH healthcare team for advice. He thought his doctor would tell him that he’d never act again. Instead, doctors encouraged him to embrace life and keep doing the things he loved.

And for Steve, that meant
taking center stage.

So Steve auditioned for a local production of Chitty Chitty Bang Bang. He’d only hoped to play a small role, so he was shocked when he learned he’d landed the lead.

His excitement quickly turned to worry. What if his PAH meant he couldn’t handle singing and dancing? Even worse — what if he couldn’t perform and let everyone down?

Although Steve had the green light from his medical team, he was concerned he wouldn’t be able to perform a whole show. He’d need help if he was going to bring the house down, but he wasn’t sure what that help was or if he felt up to asking for it.

He was initially nervous about sharing his condition. But by taking a chance and opening up about his PAH diagnosis, Steve found himself surrounded by people who wanted him to succeed, both on stage and off.

My doctor told me … “You’re doing all those things we want our patients to do so they can do the things they really want to. In your case, it’s theater. You want to do this production. They’ve cast you in this production. You’re capable of doing this production.”

His director worked hard to make sure Steve could perform and stay healthy. For example, the director let Steve sit in the audience to rest during rehearsals since there weren’t chairs backstage. They also reworked the performance so Steve could sing some of his songs sitting down.

The rest of the cast had Steve’s back, too. If he couldn’t perform because of his PAH, his understudy was ready to make sure the show would go on. That way Steve could perform without worrying about letting everyone down.

By sharing his PAH diagnosis with others, Steve found a support system in a place he least expected it. Thanks to their encouragement and Steve’s hard work, the show was a huge success.

Steve was uncomfortable talking about his condition with others at the beginning of his PAH journey.

PAH patient, Steve, in a vibrant purple sweater smiling warmly on a staircase

However, when a health scare occurred at work, compelling Steve to disclose his diagnosis to colleagues, their overwhelmingly positive response immediately alleviated his concerns.

Steve reluctantly shared his diagnosis with his colleagues after experiencing a scary PAH episode at work. Instead of brushing him off, his coworkers set up a system in case Steve had another health issue at the office, and they now check in with him regularly.

While Steve’s PAH episode was scary, talking about his condition with his colleagues — along with their care and support — gave Steve the confidence he needed to open up to other people.

And the more he shared his diagnosis, the more he found support in unexpected places — like backstage at the theater, or in the office down the hall.

Silhouette of PAH patient, Steve, and his daughter playing with his two grandchildren at the beach at sunset

Being open and reaching out to others helped Steve build a robust support system. But that doesn’t make living with PAH easy.

Steve still has good days and bad days. But when he finds himself struggling to breathe, he remembers he’s not alone. In fact, he’s surrounded by people who care and are ready to help him do things that he loves.

Steve’s message to people living with PAH: PAH is hard, but it doesn’t have to stop everyone from doing things that they love. Don’t let fear or embarrassment stop you from talking to the people around you about PAH and what’s going on. You may find your strongest supporters in the places you’d least expect.

You don’t have to go through your PAH journey alone.

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