January 29, 2015, was the day Carin 2.0 was born. Prior to this, I was a 45-year-old married woman with a 15-year-old son and had no clue that I was about to experience an incident that would literally change my life.
It was a late Thursday afternoon; I had just come home from work and was comfortably watching the Ellen DeGeneres Show with my dog. Out of nowhere, I felt a slightly painful pop in the right side of my neck. The pain never went away but eventually migrated to the center of my chest. It felt like indigestion. I knew these sensations all too well as I had been living with Crohn’s disease for over half of my life. My immediate thought was that I should not have eaten that sandwich for lunch!
After walking around for a bit, I sat down and completely lost the feeling in my legs and arms—everything just went limp. Instinctively, I knew something was wrong, but I had no idea how bad it was going to become. I called 911.
Once I arrived at the local medical center, blood was drawn and an electrocardiogram (EKG) and a chest x-ray were performed. Computed tomography angiography (CTA) was ordered. All tests were negative and my blood pressure was relatively normal. I wasn’t in terrible pain, just feeling discomfort. However, at this point, I was beginning to have fluid buildup in my lungs and neurological deficits.
The CTA results showed that I had experienced an aortic dissection. The doctor asked me to immediately decide at which larger hospital I wanted to be treated. For some reason, at that moment, I remembered actor John Ritter who did not survive an aortic dissection. I asked the doctor if I was going to die and he looked down. That was a horrific moment.
I was transported to Maryland’s Shock Trauma Unit. Once I arrived, Dr. Bradley Taylor and his team were ready and waiting. I was given a few minutes to say goodbye to my family. Telling my son that I was probably going to die was the hardest moment of my life. I did what any parent would do. I told him he was wonderful and would do amazing things with his life. I told him to respect women, always do the right thing, and be kind to others. I told him he had tons of videos to remind him of me during the times when he would forget my voice. It was agonizing. I accepted so quickly that I was going to die, but was so angry about it. I gave myself over to doctors who I had never met and didn’t know anything about me.
About 5 hours later, my new life began. I survived a Type A and B dissection. My arch was replaced with a Dacron graft and my aortic valve was spared. I was still dissected down into my left iliac. After 5 days, I was discharged and returned home. After completing cardiac rehabilitation, I realized my life would never be the same. I would have to leave the career in human resources that I loved and accept disability. Once I decided I was no longer able to work, I had to decide what I was going to do with the rest of my life.
Sitting at home while recovering gives you a lot of time to think. One thing that I kept thinking about was if someone who had survived a dissection had come into my hospital room or was in my doctor’s office during a follow-up appointment and talked to me, maybe my recovery would have been easier. Walking around with a split aorta and suffering from post-traumatic stress disorder (PTSD) is not easy. However, if I had met someone like me—someone who had lived through an aortic dissection—I believe it may have helped. That’s when the concept for Aortic Hope was born.
Aortic Hope initially was a Facebook page that focused on inspirational and motivational quotes. We created a logo, tag line, and t-shirts to help with awareness. We gave everything away, loving the joy that was starting to grow in a community usually full of fear and sadness. Aortic Hope quickly turned into a non-profit organization with an incredible Board of Directors and, most recently, a 501(c)3 designation.
Aortic Hope specializes in spreading hope, creating awareness, and providing support to patients, survivors, and caregivers of aortic disease (dissections and aneurysms). We do this by sharing information about aortic disease and hosting live Facebook events featuring physicians and therapists interacting with the community in real time. We also send out “Hope Mail” care packages to the community, offer a Survivor Video Series which spotlights individuals and their stories of inspiration, and host a monthly Support Group via a Skype platform. Within 2 years, we have grown to more than 1,400 followers and are recognized in 45 different countries.
Living with a dissection is different for everyone. Some days are great! Other days are okay. A few days are not so great. I can feel anxious and have flashbacks. PTSD may be triggered. I am exhausted. My blood pressure can be elevated and I can’t contribute anything at all.
Almost dying takes an emotional toll on you and everyone around you. However, it does do one thing that is amazing; it changes your perspective. If today is a bad day, it’s just that, a bad day. Tomorrow might very well be an amazing day. I am no longer a glass half full or half empty type of person. I now just refill that glass.
I knew surviving was something I couldn’t take for granted. I wanted to honor Dr. Taylor’s hard work and effort. I felt that if I can’t work, I can still contribute. Surviving is like climbing a mountain: you look up and realize you have a long way to go, but when you look behind you, you feel proud of how far you have come. We are dying the moment we are born. It’s what you do in the middle that counts. Don’t just survive, but always strive to thrive!
Learn more about Aortic Dissection.
The opinions expressed in this article are those of the author and do not necessarily reflect the views of The Society of Thoracic Surgeons.