My Story: Heart Valve Advocate Reminds Patients and Caregivers They’re Never Alone
Like many women, I’m often more comfortable helping others than I am receiving help. However, when I found myself dealing with a serious heart condition, I quickly learned the importance of having a strong support network and advocating for myself.
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In 2003, I learned I had a congenital aortic defect, but was told it could be decades before it would require replacement. However, just six years later I felt a sudden pain in my chest while I was substitute teaching. I went to the doctor immediately, and I was shocked to learn that I was already in need of an aortic valve replacement. I was only 42 years old at the time.
Initially I hesitated to tell anyone about my mechanical heart valve because it was difficult for me to accept that there was a foreign object in my body, not to mention the scars on my chest from the surgery. One of the toughest parts of my recovery was having to give up some of my independence during my first few weeks at home. I was very weak at first, and it took about two months before I felt like I could walk or drive.
As a former social worker and teacher, I spent much of my career helping families and connecting them with resources, but it took me a while to open up and accept the help I needed. I was lucky that my husband was able to take a bigger role running our household, juggling work and caregiving for our two young children while I recovered. We were also fortunate to have family and friends pitch in to help us out during this time. I don’t know what I would have done without their support.
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Developing a good rapport with my medical team was also critical to my recovery. I had to do a lot of research to educate myself about what was happening to me, which helped me to have more informed and productive conversations with my doctor. Doctors are part of the healing process, and I always tell people that if they’re not comfortable talking with their doctor to take a friend or relative with them, or write down their questions in advance. It’s so important that patients find a way to use their voice.
My religious faith played a big role in helping me to maintain a positive attitude, and eventually the good days outweighed the bad. Once I was able to let go of my denial, I knew I wanted to be part of a support group for heart disease to help patients and caregivers. I began volunteering with the American Heart Association in 2010, about a year after my heart valve replacement surgery, and recently became an American Heart Association Heart Valve Patient Ambassador to share my experience with others and raise awareness about heart health. Providing support for others, just as others did for me, has been an important part of my healing process—whether it’s telling my story, connecting with other patients and caregivers on the Support Network, sharing resources or even just being there to listen as someone works through his or her own struggles.
On the five-year anniversary of my open-heart surgery, I decided to pursue a project to celebrate my recovery and raise awareness of heart disease. I created a collage of handmade hearts decorated by local schools, families, churches and non-profit organizations to represent what they’ve learned about heart health. The collage, which is on display at a park in my hometown, has more than 1,500 hearts. People affected by heart disease—heart attack, stroke, heart failure or heart valve disease—don’t need to suffer in silence and denial like I did at first, and I hope the collage serves as a reminder that they’re never alone.