I was born with a congenital heart defect called bicuspid aortic stenosis with regurgitation. When I was 12 years old I was told I needed immediate open-heart surgery. As the anxiety, depression and sheer terror set in, my family tried to distract me by taking me on trips and involving me in other activities. It didn’t work. Nothing could distract me from the weight on my shoulders.
While second opinions revealed that I should wait to have heart surgery until my heart had fully developed, my teenage years were filled with checkup after checkup and test after test.
The day before my sophomore year of college, at 20 years old, I found myself again wiping away tears as my cardiologist told me I needed immediate open heart surgery. On December 15, 2010, I underwent a 9 hour procedure to replace my aortic valve. While surgery was a success, the recovery did not go as planned. During my second day in recovery I began losing blood and required 5 blood transfusions. I was exhausted, mentally and physically. But I was alive. I began my slow road to recovery, learning how to do everything that most of us take for granted, like walking, coughing, eating, and sleeping.
Taking advantage of life
After I recovered, I was determined to take advantage of my second lease on life. Everything I did had new meaning. Every time I looked at my chest I was reminded of all I had been through. I returned to college, yet still felt completely alone, with no one to talk to that could understand what it was like to need help walking up stairs, getting rides to class, and not participating in events.
After my frustration with lack of support grew to a tipping point, I took it upon myself. I joined the American Heart Association Young Professional Board of Directors. I walked into my first meeting not knowing what to expect. But finally, I had found a group of people who could understand. It had very little to do with the fact that we all shared heart disease in common and had everything to do with the fact we were all the same age, lived in the same city, and had the same goals and interests.
It happened again
Six years after open-heart surgery, I found myself again sitting in a doctor’s office being told I shouldn’t play sports. But this time it was for a completely different reason. After an injury, I underwent hip surgery, which failed, requiring a second surgery. I felt exactly as I did at 12 years-old being told I needed open-heart surgery and as a 20 year-old having open heart surgery. I was lost, confused, and afraid. I had been to hundreds of doctors and spent thousands of dollars. But what I needed more than anything else was to find a person my age, who had the same interests and goals and could understand and support me.
So I did what anyone diagnosed with a chronic condition does – I went to Doctor Google, which took me to places like Facebook groups as well as other online forums. Immediately I knew this wouldn’t work for me. I didn’t feel comfortable sharing about the realities of my health concerns to large groups of people I didn’t know. Was I supposed to just post my story and hope someone who shared similar interests would respond? When I did post, I received responses from people 3 times my age telling me about their cats and dogs and political beliefs. This is modern peer health support?
What can we do about peer health support?
It’s clear that peer health support is vital to patients, family members, and caregivers. The positive mental and physical effects of such are well documented. Yet, current options for peer health support continue to operate as antiquated, faceless forums that fail to provide meaningful interaction. As a result people don’t obtain meaningful peer health support and the benefits associated with such.
In order to obtain these critical benefits we need to treat each person individually. Each person’s journey is unique and a condition does not define us. In order for support to be meaningful, we need to ensure people feel comfortable sharing about the realities of what they are dealing with, which means they need to know the receiving party will understand. This can only be done by connecting people based on more than health concerns, and treating people as people, not conditions.
Zach Gotlib is a 32 year-old open heart surgery survivor and fierce advocate for those affected by chronic health concerns. Zach is CEO and Co-Founder and SelfiHealth, a mobile app that operates like a dating app to match patients with each other and trusted non-profit organizations based on health concern and who they are as people (interests, goals, age, gender, location), for more meaningful peer health support and access to trusted resources. Zach is a former attorney and served as the 2017 American Heart Association Survivor of the Year.