Where do I start? It's been awhile. I was doing pretty well until this past March when one morning my defibrillator shocked me when I was getting ready for work. Because that was the first time it had happened, I panicked. I was pretty hysterical because it was scary. We went to the emergency room, and they said I was having atrial flutters. A few days later, it happened again. My doctor did an ablation procedure. After the ablation, everything was fine for a few months. I felt really well.
However, things started to change within the last few weeks. Two weeks ago, my defibrillator shocked me again. I found out today that my heart rate was 250 that day. I met with my doctor today, and he said I'm not having atrial flutters anymore, but now I'm having atrial fibrillation, and my heart's been in it for the last few days. I was shocked. I had to ask him to repeat himself to make sure I heard him right. His plan is to start me on a medication that requires me to go into the hospital for him to monitor me for a few days. Later on, he'll need to do another ablation that will hopefully stop the irregular rhthyms of the atrial fibrillation.
After having been shocked three times now, I walk around in this constant fear that it's going to happen again. I don't know if any of you have ever felt that before, but it certainly doesn't feel good. Because of this fear, I have a hard time relaxing. I'm jumpy and nervous. Noises startle me. I have a hard time going to sleep because I get afraid I'll get shocked in my sleep. I explained all of this to my doctor today, and he said I'm dealing with a form of PTSD, and that it's very common for his patients with defibrillators to have that. I got to thinking, "I can't have this...that's what people get when they go to war." And then I looked it up and found a medical journal article about it, and apparently it's a very real and common thing...
"Many ICD patients cope relatively well with shock and are able to adjust and return to living life without marked injury to their psychological well-being or quality of life. However, some ICD patients, especially those who have received multiple shocks may consider the event traumatic and believe that their life was in danger and emerge with PTSD symptoms...An ICD patient is continually exposed to the threat of future defibrillation and must live with a visible and tactile reminder of this threat (eg, ICD pocket and scar)."
The article went on to talk about how patients experience "phantom shocks," where they reexperience it over and over, and I realized that this happens to me. It's almost like it's real sometimes, where you almost "feel" like you got shocked because you're so scared that you will and your mind is so consumed with that, and you imagine it. I know it sounds crazy, but that's exactly what's been happening to me. I realized that the emotional side of all of this is very real, and that I'm dealing with so much anxiety and constant worry about my ICD now. I have always been very open and honest about my entire journey, and I'm going to continue with my honesty about this part of it. I have struggled emotionally...more than I have before through my whole heart journey, but I have been vocal about it with my doctor and am working on it.
At first, I was so afraid to go back to work because of COVID and the risk of working in a school during a pandemic with heart failure. But now, it's honestly the best place for me. Working gives me something to focus on other than this crazy, broken heart of mine. My health is beyond my control, but things in my classroom are. So everytime I felt upset or discouraged, I went to my classroom and unpacked boxes (I moved classroooms this year). The more I was at school, the more at ease I felt. My co-workers have always felt more like family than co-workers, and they prove that to me over and over again. So many of them have reached out to me and offered love and support and even offered to help in my classroom. Their love knows no end. Today, I went in to work to tell my admin team about my latest issues and ended up ugly-crying in front of all of them and embarrassing myself, but no one judged me. You see, no one at work ever sees that side of me. They see Tough Candace. Strong Candace. They don't see the Candace that cries when she's alone or on her mama or daddy's shoulder. But today they saw the ugly, and all they said was, "We're here to support you, and we love you."
My boss talked to me today about how I can't live in fear and I have to take each day as a gift, and he's so right. I needed that talk. Sometimes I lay in bed at night and cry because I worry I won't even live long enough to raise my own child. When you're 34 with a weak and messed-up heart, you think about stuff like that. The good news is, my doctor has assured me that these arrythmias aren't life-threatening, and while that defibrillator may scare me, and it hurts, the truth is that it WORKS, and I'm thankful for that. One of my concerns was that the shocks may be damaging my heart, and he also assured me that they're not. That made me feel better and eased my peace of mind a bit.
So what now? For now, I'm back on a blood thinner due to the blood clot risk associated with a-fib. I'll go in the hospital soon for the new medication, and the ablation will be later on. In the meantime, I keep my faith just like I always have. I keep fighting. I stay strong. I'll keep telling my story. It's human nature to question why things happen to us, but I decided a long time ago that everything that happens to me was meant to strengthen my faith, to draw me closer to God, to quit trying to solve my problems myself and to lean on Him. I also believe that part of my journey is meant to encourage others, so I will tell every bit of my story, even the not-so-pretty parts about how discouraged I sometimes get and the emotions I've been struggling with because if I can encourage even ONE person with my story, then it was worth it for me to share my experiences.
I'm grateful for your prayers always.
Thanks for taking the time to share your knowledge
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