Congenital Heart Disease (CHD) and PTSD

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According to research in Journal of the American Heart Association, the Open Access Journal of the American Heart Association/American Stroke Association, a recent study of patients with “critical” congenital heart defects – which require at least one cardiac surgery – are at high risk for mental health problems, particularly post-traumatic stress disorder (PTSD), anxiety, and depression. Researchers found the following statistics:

  • Up to 30 percent had symptoms consistent with a diagnosis of PTSD, with more than 80 percent showing significant symptoms of trauma; 11% was traumatic cardiac event-related PTSD
  • 25 percent to 50 percent reported elevated symptoms of depression, anxiety, or both
  • 30 percent to 80 percent reported experiencing severe psychological distress

I was a part of the 11 percent, showing symptoms of PTSD after a traumatic cardiac-related event. I was a statistic with no known treatment for this debilitating illness. After my cardioversion in 2010, I was never warned about the possibility of developing any sort of trauma-related anxiety. PTSD was still a taboo topic, not openly discussed due to the feeling of shame that most, if not all patients struggle with. How could someone who is strong ever have this happen, right? If I had PTSD, then it meant I had to be weak. Unfortunately, I believed this lie for a long time, which really set me back in my ability to heal. Looking back at my experience, I realize how traumatizing it is to have 1,000 volts of electricity directed into my heart. At 24 years old, there was so much naivety on my end, believing that the significant burn marks on my chest and back from that procedure would be my worst take away from the event. I had no idea that psychological issues would arise within a matter of days. I was unaware of the torment that would ensue for years, stuck in the past and a prisoner inside my own mind.

PTSD didn’t simply hit hard out of nowhere; it crept slowly like a disease until it took over every piece of me. Very slowly, there was so much darkness with no way out. It started with constantly checking my pulse. If I even felt my heart beat against my chest, a panic attack would arise. I had never had one before, so this was a frightening experience that left me crippled and wondering if another would happen in a public place. After that, I purchased a sphygmomanometer (pulse and blood pressure cuff) and used that multiple times per day to check my heart rate. When I was not at home, I continued to manually check my pulse, using my index and middle finger on my carotid artery. Next was sleepless nights, nightmares, constant shaking, exhaustion, and the fear of public places. If I was alone, my heart rate would elevate, fear would set in, and I would grab my blanket, hot cup of tea and sit on my couch, dialing my doctor frantically. Before I knew it, that couch and blanket had become my “safe place”. If I was out of my home and felt my heart beat, I would instantly have a panic attack, which would trigger an arrhythmia and I was back in the hospital, waiting for another cardioversion. I was spiraling out of control and the person closest to me was having to play a role of care-giver rather than an actual spouse. I completely detached from those around me, put up walls and didn’t trust that anyone would attempt to understand what I was experiencing. The few times I attempted to explain my pain, it was disregarded. I wasn’t living life; I was surviving. Those around me were being tormented in their own ways and couldn’t talk to me about it. I stopped spending time with friends and barely made it to work and school each day. I always had an excuse. I couldn’t trust anyone to say, “I’m sick, I feel like I can’t leave my house, which is why I can’t come out tonight”. I became a recluse. The most activity I had each day was playing with my young son. I fought through my illness every day to be a Mom. That amazing little boy gave me more than enough reasons to fight through this every day. Because of him, I found energy to play, laugh, and on some days, dance around the house with him. I will always do everything in my power to ensure I’m the Mom he needs me to be. Around everyone else, I would put on a fake smile and let everyone tell me how strong I was. They didn’t care to know that I felt like I was the weakest person in the world. How they couldn’t tell my smile was fake is beyond me. Looking back at photos of myself from back then, there was no joy. When I woke up each morning, the only thing I looked forward to in my day, other than seeing my son, was having the ability to just go home after a long day and shut down. The people closest to me didn’t understand the extent to which I was so sick, anxious and in constant fear. Tremors and flashbacks occurred daily and finding the strength to be productive was about as comfortable as pulling teeth.

I did seek help from counselors and doctors, but all they would do is prescribe anti-anxiety medications. I was so frustrated that no one could just simply tell me how to get through this. I was told so many times that I would most likely live with this my whole life. I began taking anti-anxiety medications three times per week, because I was unable to cope with the world around me. Each day I was terrified and avoided medication as much as possible, because I knew it wasn’t the answer. There was no such thing as relaxing, because I was always anxious and in a constant state of impending doom. I couldn’t concentrate and became completely obsessed with checking my resting heart rate. I’m sure I checked my pulse every 5-10 minutes throughout the day. I became even more closed off from the world and people closest to me were losing patience quickly. The more I tried explaining what I was going through, the more I could tell everyone just wanted me to “get over it”. Patience was wearing thin on those closest to me and I was reminded by this fact many times. The problem was that I couldn’t “get over it”. I tried. I wanted to overcome this, but it wouldn’t go away. It doesn’t just go away. I had zero emotional support, no one to speak with and no research materials available to help me find a cure. I wanted it all to just go away. I used to always say that being mentally and emotionally sick was harder than being physically sick. My condition was one in which was hard to treat, because it wasn’t “tangible”. How do you explain to someone that just the mere sensation of your beating heart is too much to even live with at times? No one understood my constant fear of death, because no one around me had been within inches of it. No one tried walking in my shoes and understanding the brokenness that was my being.

I lost myself the day I was cardioverted and didn’t know how to get my life back. I struggled for about four years with PTSD and didn’t overcome it until I found the strength to live. By this time in my illness, I knew my triggers and forced myself into situations which would create the biggest panic attacks.  I forced hundreds of panic attacks upon myself in an experiment to re-wire the way my brain had learned to see the world. From my research and study in molecular biology, I found that in traumatic events causing PTSD, a re-wiring of the brain occurs with certain chemicals. After years of learned responses, the only way to overcome this psychological illness is to reverse the damage. I couldn’t find anything about how to do this, so I used a bit of my creativity to do that. I had to learn to trust my body and remove all fear that was engrained into myself. I was forced so far out of my comfort zone that I hyperventilated on hikes, experienced panic attacks working out and kept pushing myself harder. In time, it all stopped and when I discovered another trigger, I would go on the offense and squash it. I continued discovering fears and placed myself in the most uncomfortable of situations until I successfully re-wired myself.

Today, I am a rock climber and will be leading my first ascent this Spring, and entering my first bouldering competition in the fall. Rock climbing was the gateway to saving my life. I love to go on strenuous rated hikes, run, and play ice hockey with my son. Every day, I continued to step outside of my comfort zone, not from necessity to cure an illness, but because there is so much joy in it. Today, my PTSD is 99.9% gone. Sometimes, I still find myself checking my heart rate for no reason, or if I believe it is beating a little harder than it should. But you know what? That is okay. I’m learning that the sensation of my heart means it is still beating and I’m still here for a reason. I think some attributes from PTSD will always be with me, which is a good reminder of how blessed I am to be mentally, physically, and emotionally healthy. I will never take this for granted as I did before I was sick.  I am not the same person who I was before I was sick; she is gone and will never be back. I am a better person than I used to be, because I understand broken people, as I am one of the broken people. I firmly believe that God uses the scarred and broken to make this world a better place. I am more kind, understanding, unconditionally loving and quick to forgive. I value how delicate and precious life is. PTSD taught me so much about myself and I’m thankful for the experience. It was the worst time of my life, but the best thing that could have ever happened to me. I don’t worry about getting sick again, because I know how to beat this before it ever gets out of hand. I’m not invincible, but I trust myself and what I need to accomplish in life.

Many people struggling with PTSD are never able to overcome this illness. For those who do, it can be the most tormenting 5-20 years of their life.  I had a pretty severe case and not only made it out alive, but was blessed with a purpose-driven life. I know what it means to be afraid to die, but scared to live. I’m not strong because I beat this illness; I’m strong because I chose to wake up every day and live, even when it was easier to stay in bed and sleep all day. The purpose of this blog is an outreach for anyone who is currently going through what I did. I want to help. I want PTSD to be a memory, versus a reality.  If you or someone you know is currently struggling in silence, please reach out and let me assist in finding activities that will help. There is so much to live for on the other side of fear, and I hope this post is the light at the end of the tunnel that you didn’t know existed. I promise that if I can overcome this, anyone can. Don’t settle for a life in fear; you are worth so much and can make it through.

Molly

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