HCM Diagnosis
On June 26, 2019, after a long day at work, I was relaxing in the bathtub, letting the hot water soothe my sore legs. As I lay there, I felt a slight flutter in my heart, which was soon followed by a noticeable increase in my pulse. Along with the rapid heartbeat, I experienced a faint but unusual pain. It was unlike anything I had ever felt before, and I began to worry that something was seriously wrong. My heart seemed to be out of rhythm, and although I initially thought it might be a bout of anxiety due to the stress of bills and starting a new job, I tried to dismiss it and decided to lie down in an attempt to sleep.
However, the symptoms only worsened, and I found myself struggling to breathe. Alarmed, I quickly dressed and rushed to the hospital. Fortunately, I lived just a few blocks away, so I made it to the Emergency Room in no time. Upon arrival, I approached the check-in clerk and explained that I was experiencing chest pain. They acted swiftly, taking me back to a room where I was asked to change into a hospital gown and was immediately connected to various machines. I remember glancing at one of the monitors and seeing that my pulse was extremely elevated, and my blood pressure was alarmingly high.
The nurse informed me that my heart was out of sinus rhythm and that if it didn’t return to normal, they might have to shock it back into rhythm. The situation was serious enough that the Emergency Room staff decided to admit me to the Intensive Care Unit (ICU) so that they could perform an angiogram and conduct further testing and medical questions about my past. They wanted to know if I was physically active, whether I often felt out of breath, and if I was able to run. I explained that I had always struggled with physical activities, whether it was playing a game of basketball with friends or running a mile. These challenges had been present since elementary school.
The nurse explained that my heart's wall was abnormally thick, making it difficult for my heart to beat efficiently. This condition was affecting my ability to engage in physical activities, often causing chest pain when I exerted myself. The tests confirmed that I had abnormalities in my heart, and the cardiologist diagnosed me with Hypertrophic Cardiomyopathy. Hearing this diagnosis was a shock, especially when I was told there was no cure. I remember feeling utterly devastated and hopeless, even contemplating giving up. The cardiologist informed me that while there is no cure, there are medications that can help manage the symptoms and improve my quality of life. This condition would require ongoing care and management. This diagnosis marked the beginning of a new chapter in my life, one that would involve careful monitoring of my heart health.
She referred me to the Intermountain Medical Center in Murray, Utah, where specialists are familiar with my condition and could provide further care and support.
Living with HCM
After receiving my diagnosis of Hypertrophic Cardiomyopathy (HCM), I wish I could say that I was prescribed some medication and lived happily ever after. Unfortunately, that is far from the truth. My journey with HCM has been anything but straightforward. From the time of my diagnosis to my eventual heart transplant, my life was filled with numerous challenges and hospitalizations—at least eight more after my initial diagnosis. Each hospital stay began with an emergency room visit due to chest pain, a common symptom of HCM. Once admitted, I was closely monitored and given fluids while undergoing a series of tests, including echocardiograms, stress tests, and others. After the tests were completed and my pain and symptoms subsided, I was discharged, usually after spending about a week in the hospital. However, this cycle would inevitably repeat itself. I would be well for a time, but it was only a matter of when—not if—I would find myself back in the hospital. The interval between these hospitalizations varied, sometimes two or three months, with the longest stretch being six months
. This pattern continued for four years, largely because I did not prioritize my health. I didn't truly care whether I lived or died, though I certainly didn't want to die. I simply didn’t care enough to take proper care of myself. In hindsight, I realize that a part of me gave up when I was diagnosed. I believed my life was essentially over, influenced by both the doctor’s diagnosis and what I had read about HCM—a condition known for causing sudden death due to the heart abruptly stopping. What I failed to consider was that sudden death isn’t as common when HCM is properly managed by a healthcare professional. For instance, doctors often monitor patients for abnormal heart rhythms by having them wear a heart monitor for at least three days. This data is then analyzed to determine if there are any concerning patterns. In my case, no abnormal rhythms were detected, meaning much of my fear was unfounded. However, I found myself constantly worrying about my heart stopping, whether I was awake or asleep. If I had experienced abnormal rhythms, the doctors would have likely implanted an Implantable Cardioverter-Defibrillator (ICD), a device that detects abnormal heart rhythms and delivers an electrical pulse to correct them.Living with HCM can indeed be frightening, but with regular appointments with a specialized HCM doctor and proper self-care—including adequate sleep, a healthy diet, avoiding smoking and alcohol, and taking all prescribed medications—you can lead a relatively normal life. My journey with HCM has taught me the importance of not giving up and understanding that while the condition is serious, it doesn’t have to define or limit your life. With the right medical care, support from family and friends, and a personal commitment, it is possible to manage HCM effectively and continue living a fulfilling life.
Having this diagnosis brought a lot of anxiety into my life, and I should have sought medical help from my doctor for something to relieve my anxiety and possibly help with some of my depression. Instead, I chose to hide everything and keep my feelings to myself. Many times, I would find myself thinking, "This is no way to live—with this disease, being worried, scared, out of breath, tired, and having chest pain." On occasion, I even found myself planning how to end my life in a way that would prevent family members or loved ones from finding me.
Thankfully, one day my life changed for the better. I decided I wanted more out of life and realized I had family and people who cared about me—though I always had this, I had been too blind to see it before. I had given myself a death sentence, but I didn’t have to. In August of 2023, I met the love of my life, the best thing that ever happened to me. She helped me see what life could be, and together, we started a new journey.
Please visit my pre-transplant page for more about my journey.