Patient Stories
Bo Nemelka

More Than a Diagnosis: Bo Nemelka’s Journey With Dilated Cardiomyopathy (DCM)

Bo Nemelka’s journey with DCM goes beyond symptoms, diagnosis, and treatment. It’s an inspiring tale of family care, career, and advocacy.

DCM wasn’t new to Bo when he was diagnosed. In his broader family, there have been 12 heart transplants. His father recently had his second. Bo tested positive for the DES gene in 2018 and received a cardiac MRI in 2021 that revealed scarring on his heart, which led to the placement of an ICD.

He was pretty healthy up until 2023 when he “saw stars” playing football with his family. This was the first time he was shocked by his ICD. It happened again a few months later. Eventually, he was prescribed a beta blocker. While he can’t do activities in sprints, he’s still able to do manual labor or put in the work required to manage his rural home and land. He says, “There are hard days,” and the transition was tough, but there was no other choice. He’s grateful he’s still able to live his life and watch his kids grow up. He credits being proactive about his health and diligent with medication for the two years he’s experienced without a shock from the ICD.

While a transplant is in his future, he knows he can handle it because he’s watched his dad go through his second and was able to keep working through most of the process.

He’s not just thinking about his own future, however. Knowing what he does about his family’s health history, he got his kids tested thanks to the help of a genetic counselor. “It’s a pretty easy process because the kits come in the mail.” Four of his five kids tested positive, but he’s setting them up for long, healthy lives by teaching them to stay up to date on annual tests and bringing them to a pediatric cardiologist. The whole experience has made him a huge advocate for genetic testing and preventative measures.

His advocacy leveled up when his genetic counselor recommended the DCM Foundation for resources and community. After connecting with the Foundation, he was eventually asked to be a board member because of his work experience with healthcare strategy, but also his fervent support of fellow patients. He cites, “There are millions of patients with cardiomyopathy, but less than one percent have been genetically tested.” He hopes that his time on the board will provide hope to DCM patients and improve testing awareness because testing has done so much for him and his loved ones. He feels the future is quite bright if patients stay informed and aware. “There are pretty amazing advancements in science and technology.”

When asked what he would share with his peers in the DCM community, he responded, “You genuinely are not alone in this. There are people who have this disease, gone down this path, who are living healthy, active lives. There’s no reason for anyone to feel they are going through this alone.”