Advocate Spotlight: Stephen Hilfiker

It’s amazing how one moment can change the trajectory of your life. For Steve Hilfiker of Florida, it happened in 2019 when he received an unexpected diagnosis of cardiac sarcoidosis, commonly described as the heart turning to stone.

Surprisingly, Steve had the disease for five years and was in stage C heart failure. Steve had considered himself healthy and leading an active lifestyle, so this diagnosis came as quite a shock to him and his four children.

Every day, Steve grew sicker, experiencing nausea, dry heaving, dizziness, and loss of energy. In June 2020, he had several tests run; during the follow up doctor’s appointment, Steve learned he was now in stage D heart failure and in immediate need for a heart transplant. Things progressed quickly and two months later, coming close to death, Steve had a heart transplant and then began cardiac rehabilitation.

Once off the walker, Steve was placed on the treadmill and back to full recovery. He could see the beauty of life. Steve credits his survival to cardiac rehabilitation, saying “I learned so much – excellent program! They expected 40% exercise recovery and the recovery team helped me achieve 209%.” Ninety days after being discharged from the hospital post-transplant, Steve climbed a mountain in northeast Georgia (an 1100' vertical hike) on Thanksgiving Day.

But this isn’t the reality for many cardiac sarcoidosis patients. The American College of Cardiology describes the prognosis for cardiac sarcoidosis as poor, noting “patients can deteriorate quickly.”  In fact, Steve has learned that many people are dying from this disease without knowing they have it.

To help others benefit from his experience, Steve began to volunteer with the American Heart Association in late 2021. This Spring, he received the 2022 Leaders for Life award in Southwest Florida for his efforts.

With a desire to affect policy change, Steve became a You’re the Cure advocate in January 2022. Right away, he began to meet with his members of Congress in support of the Increasing Access to Quality Cardiac Rehabilitation Care Act of 2021, which would bridge the gap between referral and the start of cardiac rehabilitation and help Medicaid patients more equitably access proven services to help improve their health outcomes. At the state level, Steve contacted and met with several legislators throughout the 2022 Florida Legislative Session in support of Telecommunicator CPR (T-CPR) legislation to improve out-of-hospital cardiac arrest survival. The T-CPR legislation became law on July 1, ensuring 911 callers are coached in CPR when needed until emergency medical services arrive.

In addition to volunteering with the American Heart Association, Steve has created a six-minute documentary about his heart transplant called “StoneHeart: An Undying Gift,” (watch on YouTube) which was screened at the American Pavilion at Cannes International Film Festival in May 2022. He also has created a multi-faceted network to identify and promote more effective methods for early detection and treatment of cardiac sarcoidosis, raise awareness, support organ donation, and deliver messages of hope through research, education, and media. Learn more at https://www.hilfikermissions.net/.

To bring everything full circle, Steve met the sister of his heart donor earlier this month, highlighting how the decision to sign up to be an organ donor gives another person a second chance. And Steve is taking full advantage of his second chance, with the trajectory of his life changing as he is a relentless force to save lives.  

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Written by Julie M. Howell, AHA Southeast Grassroots Manager. Stephen Hilfiker contributed to this article.