Do I still have heart disease? It’s a funny question for a heart disease patient.
For me, this was a very real and frightening thought. In June of 2022, I had open heart surgery to replace my bicuspid aortic valve and ascending aortic aneurysm. A few weeks later, while recovering at home, I woke up in a panic. Who was I? Now that my heart was fixed did I still have heart disease? I was scared because I wasn’t expecting this identity crisis. Mental health challenges after surgery were never discussed. I had no idea that this as well as post-surgery depression was a possibility.
We must do better for all patients facing a diagnosis. Educating on mental health challenges should become standard practice during medical appointments. Providing support groups, whether online or in-person, must be part of the disease management plan. Mental health support, along with access to medical treatments, is a pillar of my advocacy work.
Moved by Maureen’s Outcome
When asked why I am so passionate about being a patient advocate, I talk about Maureen.
Maureen was my tennis partner and best friend. On Mother’s Day in 2003, she died of a heart attack. I was with her as the paramedics did everything they could to save her. It was so foreign; it was such a shock – a young and healthy woman dying of a heart attack. It wasn’t common knowledge that women could have heart disease. In my mind, older men who were overweight and smoked had heart attacks. Not a vibrant and beautiful friend who played tennis five days a week.
Maureen’s experience is the reason I self-referred for a coronary calcium scan. I was scared that I was going to have a heart attack, too. It was through this scan that my aneurysm was discovered, and then with further testing, my congenital heart defect. I was 42. The same age as Maureen when she lost her life.
A Shift in Outlook
Living through this tragedy and then accepting my new life with heart disease, really put my outlook on life to the test. It wasn’t easy to not be a “victim” in the early years after diagnosis and losing Maureen. I stayed busy raising my boys and volunteering in local charities. After my endocarditis diagnosis in 2017, my outlook began to change. As I approach the anniversary of my surgery, I look back on how this disease has been one of my greatest gifts.
The deep fulfillment I feel each time I speak to someone newly diagnosed or heading into surgery is something I can’t describe. I am so content and happy each day I wake up with a beat in my heart. Joining Heart Valve Voice US as the Director of Patient Engagement has been a wonderful addition to my journey, as it provides me with the opportunity to advocate on a professional level for patients, their rights and wellbeing. Speaking to patients across the country is such a beautiful experience. I love to hear their stories and to share support with them; letting them know they are not alone on this journey.
Robyn Peacock is the Director of Patient Engagement for Heart Valve Voice US.
