Sam’s journey began in 1993 when his mom, at age 56, suddenly passed away. His mom had been told at one point by a doctor that she had an enlarged heart. She hadn’t been feeling well for quite a while, and the doctors thought she was just going through the “change of life” and that a lot of her issues were “in her head.” Sam remembers his mom telling him how she felt. During the coming years, Sam recalled feeling the same symptoms that his mom had described. He went to numerous doctors and was finally diagnosed in 1998 with HCM. Doctors immediately implanted him with an ICD. At this time, he was 39 years old. Sam later discovered he also had a cousin and an uncle with HCM.


Sam loved the outdoors and was very active. It wasn’t until 2018 that Sam began having problems walking long distances. He would become short of breath. He went to an HCMA-recognized Center of Excellence (COE) and had an apical septal myectomy surgery to reduce the pressure in his heart. The years that followed gave Sam a better quality of life.


In the summer of 2022, Sam began to have worsening symptoms. Because Sam always looked so physically fit, it was sometimes hard for him to convince his doctors how he really felt on the inside. At the beginning of August 2022, he went to his local emergency room, which was not a COE hospital, because he felt so bad. The cardiac nurse practitioner told him he was experiencing a non-cardiac event. At the end of August 2022, Sam had what is called a V-tach storm,a life-threatening condition with multiple episodes of rapid, irregular heartbeats within a short time period. His ICD went off numerous times. He was put on bedrest at this non-COE hospital until an ablation could be done five days later. The EP doctor told him he would need another ablation, but she wanted to give his heart some time to heal, so it was done on November 17, 2022. According to the EP doctor, the second ablation was successful, but 2 1/2 weeks later, Sam’s heart began to experience V-tach and shocks again. Doctors changed his medicine again, and he was released from the hospital on December 8, 2022. Less than 12 hours later, he was shocked again, and we were back in the emergency room on December 9th. Doctors now said he needed a heart transplant. We signed all the paperwork on December 11th, and the process began for evaluating him. All the tests looked good; he was listed on December 15, 2022. On the same day, doctors noticed what they called an ileus. An ileus is when the intestines stop working properly, leading to a blockage of food and waste. The doctors said it would be gone in a couple of days; however, his condition worsened, and doctors ended up doing two abdominal surgeries on him.


On January 17, 2023, Sam passed away from respiratory failure. I share this story to impress the importance of seeking out a Center of Excellence program. I would not wish the pain and suffering that Sam went through on anyone. Please help spread the word about the importance of going to an HCMA Recognized Center of Excellence for treatment!