In “Living the Life I Love: Overcoming Genetic Heart Disease,” the author shares their personal journey of living with hypertrophic cardiomyopathy (HCM), a genetic heart disease. Despite the risks and challenges posed by the disease, the author emphasizes their determination to continue living a life they love. From undergoing surgeries to facing doubts and pain, they highlight the importance of advocating for themselves and finding validation. The author's experience prompts them to start a nonprofit organization, Heartfelt, to provide affordable cardiac screening and raise awareness about early detection of heart disease. Through their story, they inspire readers to take charge of their heart health and find peace of mind through regular screenings, emphasizing that it is possible to live a happy and healthy life with heart disease.
Understanding Hypertrophic Cardiomyopathy
Hypertrophic cardiomyopathy (HCM) is a genetic heart disease that causes the heart muscle to thicken, making it harder for the heart to pump blood effectively. This condition puts individuals at a high risk for sudden cardiac death. HCM can be hereditary and is often passed down through families, as was the case for the author of this article. Having lost six family members to HCM, the author knew the importance of taking steps to reduce their own risk of cardiac arrest.
The Decision to Undergo Open Heart Surgery
When diagnosed with HCM, the author was faced with the decision of whether or not to undergo open heart surgery. This was a difficult choice, as they had never undergone surgery before and were understandably scared. However, they recognized that even leading a healthy lifestyle could not prevent sudden death from HCM, so they ultimately decided to go through with the surgery to protect their own health.
Experiencing Surgical Complications
After the surgery, the author experienced intense pain that continued to radiate throughout their body. Despite seeking medical attention, they struggled to have their pain recognized and taken seriously by physicians who claimed to be unsure of the cause. It wasn't until they found a physician who believed them and performed corrective surgery that they finally received validation and relief from their pain.
Getting Validation and Rectification of the Surgical Complications
The corrective surgery confirmed that the device had been placed incorrectly during the initial surgery, causing the author immense pain. Finally receiving validation for their pain and having the device repositioned allowed them to move forward with their life.
Facing More Challenges: Recall of Device and Component
Unfortunately, the author discovered that the device generator in their chest had been recalled. Additionally, the wires responsible for delivering electric signals had fractured, posing a risk of potential cardiac arrest. This meant that the author had to undergo another surgery to address these issues, which carried its own set of dangers.
Enduring an Emergency Open Heart Surgery
During the surgery to address the device and wire complications, a vein was accidentally severed, resulting in severe bleeding. The author's surgeon had to quickly make the decision to perform emergency open heart surgery to save their life. Waking up after the operation, the author was faced with the shock and emotional toll of having undergone such a traumatic experience.
Dealing with Post-surgery Shock and Recovery
Recovering from emergency open heart surgery proved to be a difficult and challenging process for the author. They had not anticipated the toll it would take on them physically and emotionally, and they began to doubt whether they would ever regain their quality of life.
Finding Strength and Returning to Normal Life
Despite the challenges, the author eventually found the strength to persevere and began their journey of recovery. Over time, they regained an amazing quality of life and were able to engage in activities they enjoyed, such as playing pickleball. They are no longer on medication and do not experience symptoms of heart disease, allowing them to live their life to the fullest.
Connecting with Community through Heartfelt Nonprofit
The author's experience with HCM inspired them to start a nonprofit organization called Heartfelt. Through this organization, they provide affordable and sometimes free cardiac screening for adults and children aged five and older. Their goal is to promote early detection of heart disease and heart problems, as early intervention can save lives. The author recognizes the importance of widespread cardiac screening, even for individuals without symptoms.
Promoting Positive Outlook While Living with Heart Disease
The author emphasizes the importance of early detection and proactive measures when living with heart disease. They believe that it is possible to live a happy, healthy life despite the condition. By sharing their personal journey, the author hopes to spread awareness and help others navigate their own experiences with heart disease.
In conclusion, understanding and managing hypertrophic cardiomyopathy can be challenging, but with the right support and medical care, individuals can lead fulfilling lives. It is essential to make informed decisions, find healthcare professionals who listen and validate concerns, and take proactive steps to prioritize heart health. Through organizations like Heartfelt, individuals can also access affordable cardiac screening, promoting early detection and potentially saving lives. With a positive outlook and the right resources, individuals can thrive despite living with heart disease.
Source: https://www.healthywomen.org/real-women-real-stories/genetic-heart-disease-wont-stop-me
