Young Athlete Survives Viral Myocarditis

Jorge Estevez, 27, lived an active lifestyle as a competitive runner before being diagnosed with viral myocarditis: “My only hope for the future is not just to survive, but to get back to the old me.”

As the sun shone brightly on the crisp autumn morning in Dumont, New Jersey in October of 2019, Jorge Estevez donned his running shoes and set off on his daily jog. A seasoned athlete, Jorge had a long history of competing in grueling physical endurance challenges such as Spartan Races and Tough Mudder obstacles, and he had been a competitive runner for as long as he could remember. However, what was intended to be routine exercise turned out to be a life-changing experience for him.

During his run, Jorge recognized that something was amiss when he found himself struggling to catch his breath. After taking a short break to hydrate, he attempted to continue his run, but was unable to do so. Jorge had always prided himself on maintaining a rigorous physical fitness regimen and had traveled the world to compete with the best athletes – shortness of breath on a mere jog was something he should not be experiencing. The following day, he visited a doctor, and his life was forever changed by the events that unfolded.

Jorge explains his initial course of action, “I had to go to the doctor to make sure that everything was going well. Because I’m a competitive runner, I needed to make sure I was fine. I went to my primary doctor, she ran an EKG, and it came out abnormal.” After the doctor referred him to a cardiologist, beta blockers were prescribed to him for the heart palpitations — feelings of the heart beating too hard or too fast, skipping a beat, or fluttering. Unfortunately, the medication did not help, and a month later Jorge starting to experience more debilitating symptoms such as shortness of breath, fatigue, and tiredness. He went back to the cardiologist for an MRI and the results showed an enlargement of the myocardium — the muscle layer of the heart. At this point, the cardiologist’s diagnosis was still not certain.

“The doctor was unsure if it was myocarditis or sarcoidosis, so he did another test called a PET CT scan, where then we found out that it was myocarditis,” explained Jorge. “I had never heard about myocarditis prior to this.”

Jorge was unfamiliar with the term myocarditis. He reflects on how his lack of knowledge about the disease initially led him down a difficult path, fueled by curiosity and uncertainty. His initial reaction was one of disbelief. However, after doing some research online, Jorge learned that he could potentially have a life expectancy of only three years, “that really affected me mentally and I got to a very low point in my life.”

For people across the world who are diagnosed with myocarditis each year, the news can be difficult to process. The consequences often necessitate significant changes to one’s lifestyle. This has certainly been the case for Jorge, who, for the past three years, has been unable to work due to his limitations and the little work he has been able to do has not been physically demanding. Jorge candidly shares the everyday struggles of living with myocarditis and the ways in which it has impacted his daily life: “On a scale of 1 to 10, I feel like a 6 right now. It’s difficult for me to undertake certain chores at home like doing the dishes, cleaning the house, even washing my own car. And in terms of symptoms, I still have palpitations daily. Sometimes I feel shortness of breath, weak, and fatigued, depending on what I do throughout the day. I’m definitely not the same as I used to be 2-3 years ago.”

Jorge continued to list the medications that have been prescribed to manage his condition: “Currently I take four different medications, two of them are beta blockers, one ACE inhibitor, and another one is to prevent scar tissue formation (fibrosis).”

It is never easy for anyone to navigate the difficulties of a serious medical condition, but for Jorge, having a strong support system provides much-needed resilience and upliftment and helps him to cope with the challenges. Jorge’s family plays a crucial role in helping him through his difficult times.

Nathaly Estevez, Jorge’s younger sister, witnessed firsthand the significant changes in his life following his myocarditis diagnosis. Initially, she felt lost and unsure of how to help him navigate this new reality, as there was limited information available about the condition. The most difficult part for Nathaly was seeing the drastic difference in Jorge’s lifestyle before and after the diagnosis. Whereas he had previously traveled extensively for races, he was now unable to engage in such activities, and even simple tasks like going for a walk had become exhausting for him. Despite these challenges, Nathaly remained supportive of Jorge and worked to learn as much as she could about his condition in order to help him manage it: “He would come to me for help and talk to me about it… and he knows that if he needs help with something physically that I’m going to do it.”

As a family member witnessing the changes in Jorge’s demeanor and physical abilities following his myocarditis diagnosis, Nathaly has a unique perspective on his condition. When asked about her hopes for his future, she responded, “I hope he gets better so he can go and race because that is what he enjoys. Also, I hope other people with the disease get better and the awareness of myocarditis is raised. People need to know that they are not alone, that they are not the only people that have this condition.”

A silver lining of Jorge’s myocarditis diagnosis was the strengthened bond between him and his sister. As they spent more time together, the siblings grew closer and developed a deeper understanding and appreciation for one another. Nathaly became more supportive of Jorge and his needs, and Jorge learned to rely on Nathaly for emotional and practical support. Through their shared experience, the duo formed a stronger bond that brought them closer together.

Thanks to his sister, his positive outlook, and a competitive nature that has driven him throughout life, Jorge believes his true purpose is to make others happy and to encourage those who may be going through a similar experience. His advice is “There’s always light at the end of the tunnel and don’t be afraid to talk to somebody to get help. There is always help available, so do not lose hope.”

For Jorge, the last three years have been an emotional and physical journey of putting his life back together, one positive, deliberate step at a time. He continues to be motivated to live life to the fullest, “I’m hopeful and I am grateful that I’m still here, living this life.”