PRETTY LADY CHRONICLES: Why I Chose to Be a Patient Advocate

I was diagnosed with heart failure 19+ years ago. What I know now can in no way be compared to what I knew then. The connections I’ve made with other patients have had a profound impact on advocacy for me.

Becoming my own best advocate evolved into helping others navigate their journeys. What began as private one-on-one meetings grew to a number of awareness and advocacy initiatives and now facilitating patient-led support group meetings.

Understanding

I’ve often had feelings of loneliness that no one understands because we don’t have the same struggles. Although some family members and friends would sympathize while others empathized with me, I felt they couldn’t get it.

As I matured, I understood that no one will have my exact set of circumstances. That’s what makes each of us unique. However, connecting with others who shared similar experiences would open me to a world where I was passionate, considerate, understanding, and offered support for others. I developed a bond with complete strangers I would call my heart sisters and heart brothers.

I often find myself reiterating the importance of advocacy. Being able to connect with others who understand what you’re going through is like a weight being lifted. A release. Knowing that you’re not alone can make a world of difference in the quality of life and recovery.

Purpose

Although I’ve faced many obstacles related to my heart failure, they’ve brought on far more lessons to be shared. I’ve often felt like my journey wasn’t just for me. Then I would be connected with someone dealing with an issue I’ve conquered after trial and error. At those moments, I’m like ok God I know this is you.

I live in a small rural town in the South Metro Atlanta Region. I had the opportunity to speak with a community member considering LVAD implantation. It just so happened I met one of his family members the year before during an awareness event. Sharing my LVAD experience to give others a glimpse of life with an LVAD is something I don’t take lightly and do it from the heart. He would go on to receive his LVAD and is recovering well.

Just days later I felt there was a greater need for support in my community. I took a chance and made two posts in local discussion groups to see if there was any interest. Almost immediately I received responses from LVAD and heart transplant recipients, or others considering both. I couldn’t believe it.  Just like that, I had connected with four members of my community who all felt no one else near them was experiencing similar health struggles.

I’m still in awe and shock. The next day I had lunch with a new heart sister who was facing the same fears and anxiety I was ten years ago before receiving my first LVAD. The joy she made me feel knowing I provided her not only with information but comfort and peace is indescribable. We formed an online group and scheduled our first face-to-face patient-led support group meeting just in time for Heart Month.

My calling

My faith has been tested, but it stands strong. All I could say was 'Look at God'! I am surviving and living a purposeful life greater than I could have ever imagined. When I look at it, I really didn’t have a choice in the matter. Just following my calling.

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