“Patient advocacy and peer to peer support is the cornerstone of strength for one's journey.“
You’ve been diagnosed with HVD by your cardiologist, and you say to yourself now what? Where do you turn for information, who do you talk to about what this means? These are some of the questions that I had upon my initial diagnosis and what this would mean for my future. As I reflect back upon my journey, I found that if I had other patients to engage with that have “been there and done that”, this would have eased my questions of the “what if’s” “why me”, “what’s next” and fear of the unknowns. Engaging with other like-minded heart warriors is essential to the emotional support we lend each other on our journeys. Most importantly, I would like to share that YOU are NOT ALONE! The medical professionals tell you what they will do medically, but it’s the survivors that can help you understand what it will be like to recover.
Heart Valve Disease Awareness Day is important to me because I know how I felt when I was first diagnosed with a leaky mitral valve. I felt scared and alone and did not understand the importance of how deadly this can be. While I was told that initially having a heart murmur and mitral valve prolapse was a rather common occurrence, I did not know what this would mean for my future. One thing was certain, however; timing would be critical. Heart valve disease can usually be successfully treated with valve repair or replacement in patients of all ages. Having my own valve repaired would be a much better option than replacing it, in my case. My personal commitment to follow-up appointments was vital to survival and a good outcome.
Heart valve issues are often confused with the everyday stresses of life, such as overall fatigue, shortness of breath, lightheadedness, and palpitations. As women, our first reaction is to ignore and shrug off any symptoms that present themselves, but we must be our own advocates. We must take matters of the heart into our own hands and seek professional medical advice if something does not feel right.
Valve disease can be often times asymptomatic and can be deadly if the warning signs are ignored. As someone who is newly diagnosed, I would encourage them to visit the Valve Disease Day website, Learn About Valve Disease – Heart Valve Disease Awareness Day (valvediseaseday.org) to explore the resources that are available to help recognize specific risks and symptoms of heart valve disease, improve detection and treatment. This website also offers a wealth of resources on raising awareness about valvular heart disease including digital tools, animations, videos, and patient stories.
This is why heart valve disease awareness is important to me. Giving a voice to heart valve disease is essential to raise awareness for this often silent but deadly disease. Knowledge is Power!
Recognized every February 22 during American Heart Month, Heart Valve Disease Awareness Day is an annual day dedicated to raising awareness about heart valve disease — its risk factors, symptoms, detection, and treatment.
I have become engaged in HVD Awareness Day, and as I have come to know, heart disease affects 1 in 3 women, and it most certainly does not discriminate. When followed carefully by expert medical staff, with treatment timed right, women with heart valve disease can lead normal active lives. I have found that I can maintain my vigorous lifestyle and not be destined to a life of limitations.
To share is to care. I share my story, so others do not feel as alone and scared as I did. Peer to peer support provides Informational Support, Emotional Support, and Mutual Reciprocity. All of these lead to increased confidence, increased perception of social support and understanding of self-care which ultimately lead to a better quality of life, improved health behaviours, medication adherence and decreased re-hospitalizations.
If I am able to help just one person, it makes my heart smile, as I know what it felt like to experience the ups and downs of recovery. There is still plenty of fight in me as a heart valve disease survivor and it is my personal mission to keep paying it forward for those enduring similar heart journeys that may not have the support and encouragement from others. By sharing my journey, I hope to be an inspiration to others.