I have a cousin. This cousin has served over seas in the military. Sacrificed his time and talents for our country. Risked his life on a daily basis. Been targeted and shot multiple times. He’s been witness to horrific scenes and unfortunately, is now a victim of what’s called PTSD (Post Traumatic Stress Disorder). And it’s only due to my own personal experience that I had the wonderful bonding opportunity to sit with him and share what we both describe as ‘the scarriest days of our lives’.
My cousin was stationed right behind enemy lines. He told me gruesome stories of his friends being blown to pieces or decapitated right before his eyes. He told me of the times he’d been shot, and the searing pain he felt once the adrenaline had worn off. He also explained how PTSD had taken hold of his life for months following his return home. How he couldn’t sleep at night because the nightmares were too intense. Or how he couldn’t watch war movies because the sound of shooting guns and firearms would throw him into a panic. It’s been years since he went overseas and I believe he’s doing much better. After all, time is the ultimate healer. But I will never forget the time we sat down to talk. I knew he could understand the panic and anxiety I felt on a daily basis after my incident in July of 2010. He offered me hope, telling me it would get better. And that eventually, things that created crippling fear inside my mind would soon have little to no effect on me.
I don’t know why, but last night as I was about to post a completely different topic on my blog, I felt like I needed to write this story. Maybe it’s for my own benefit, maybe not. Maybe someone else needs to hear it. I don’t know. Nevertheless, for the first time I’m writing in detail what took place in January of 2010, and putting it out there for all to see. I believe I mentioned this incident in a post a LONG time ago, but never could I write the details. Doing so forced me to relive it, and that was something I was NOT going to do, until now.
Most people know I have what’s called an ICD. An Intro-Cardio Defibrillator. It acts as a pacemaker and if need be, a life-saving defibrillator. It was placed under my left shoulder when I was in 8th grade. It acts as a ‘guardian angel’. It watches my heart’s every move. And as a heart disease patient, I was at the point where having one was very necessary. With my disease, the risks are ‘sudden death’ and/or heart failure. And yes, sudden death sounds dramatic, believe me I know. Frankly, I never use the term. But I’m corrected by my doctors every time I just say “pass out”. In fact, when I went out to the Mayo Clinic in August to get surgery I was in a consultation with a cardiologist when she asked me, “Now, how many times have you experienced sudden death?” and I said, “Do you mean how many times have I passed out?” and she said, “No, we use the term sudden death. Because you die suddenly. Understand? Now, how many times.” So, needless to say I guess I was put in my place. And whether I agree with it or not, that’s the correct term, and that’s why I have an ICD. When I ‘die suddenly’ the ICD does exactly what an external defibrillator would do. It shocks my heart back into a normal rhythm, keeping me alive.
This picture is an x-ray of an ICD. It's not my x-ray, I copied it off the internet, but it gives you an idea. The wires sticking out of the ICD travel down and screw into the heart.
When a patient receives an ICD they are given a small, donut shaped magnet. This magnet is to be carried with the patient at all times in case the ICD starts to administer inappropriate shocks. In which case the patient would place the magnet over their skin where the ICD is placed and the magnet will then shut off the device. This RARELY happens but if it does, I think the inventors of the ICD knew a patient would want it shut off because being conscious for a shock is extremely painful. Before I experienced a conscious shock of my own I was told it would feel like being kicked in the chest by a horse. The pain would be intense but it would be short lived. And since it was such a rare occurrence for a patient to be awake (or alive) when a shock was necessary, I never really gave it a second thought. And just like most other ICD patients, I never carried my magnet with me. It was such an inconvenience. It was too heavy to carry in your pockets, AND if it was placed anywhere near electronic devices or credit cards, it would completely destroy them. And as a teenager I would’ve much rather had my cell phone around than a ‘useless’ magnet. So it wasn’t until my accident that I valued that small donut shaped piece of metal. And since then, I don’t go ANYWHERE without it. I have one in my car door, in every room of my house, and at my job. And here’s why.
This incident took place when I was five months pregnant with Sophie. That piece of information is important. I’ll explain why later. One night I was sitting in my mom’s room, talking to her as she was getting ready for bed. It was about eleven p.m. I remember just lying there, talking mid-sentence when an extremely loud bang went off in my head. My ears were ringing, the room was suddenly spinning and my chest felt like it had just been crushed. It came out of nowhere and my body jolted as I screamed at the top of my lungs. My mom, horrified, jumped onto the bed and cradled me onto her lap trying to get my attention. I remember looking at her face with absolute terror, wondering, “What in the hell is happening to me?” (excuse my language, but those WERE my exact thoughts) And to be completely honest, if you ask my mother or I about that first shock we’ll both tell you we thought I was being possessed. Sounds crazy, but the way my body jolted and deformed, and the confusion that followed led us both to think something was SERIOUSLY wrong. Which it was, just not exactly what we initially thought. So, after I finally caught my breath I screamed, “Mom, something’s wrong!” and right after that another one hit. My body did the same thing it did the first time, and the pain was even more intense. And that’s when I clued in. That’s when I knew I was being inappropriately shocked. I screamed at the top of my lungs for someone to run to the kitchen and grab the magnet off our fridge. Before another shock hit me, my sister came running in with what should have been my saving grace. I placed the magnet over my chest and waited to hear the ‘beep-beep-beep’ of the device shutting off. By this point my entire family had run into the room to see what was going on. I just lay there praying to God I never had to feel that pain again. For a couple seconds I heard the beeping, but then it stopped, and I looked up at my mom. Both our faces read, “OH NO.” And that’s when it came again. This shock felt like someone took a sledgehammer to my brain and threw me against a concrete wall. My dad immediately called the ER and told them we were coming. We live only a couple blocks from the American Fork hospital so we knew it’d be faster to just drive ourselves. My mom helped me off the bed as my siblings ran to grab my coat and shoes. I was terrified to move. I felt like moving would aggravate the device and shocks would surge in one after the other. Well I was right. Every few steps another shock would go off and I would collapse to the floor pleading with God to make it stop. I was sobbing, the pain was unlike anything I could have imagined. And that pain mixed with the fear of uncertainty that we were all experiencing was throwing me overboard. My brother Brayden helped me walk out to the truck as my parents got it going and hopped in first. From our front porch to the truck I was shocked three more times. Each time Brayden had to pick me up off the ground and drag me the rest of the way. I screamed each time and I found out later that our neighbors heard and called the cops because they thought someone was being attacked. Oops….. Anyway, as I was getting into the truck it happened again, and before we could even close the door, my dad started backing out. He drove through every stop sign and light and we made it to the hospital in under 30 seconds. He even drove over the round-about in the hospital parking lot. We wanted help as soon as we could get it, and I think they were just as terrified as I was. During the drive there I started drifting off, I knew the pain was making me pass out, and quite frankly I was hoping it would. I turned to my mom and said, “It’s too much. I’m passing out. I hope I do. I don’t want to feel it again.” and all she could say was, “You’re gonna be okay ShaNae”. When we arrived at the ER, they already had staff waiting for us with a roller bed. The doctor said, “We need you to transfer yourself to this bed.” But honestly, I was frozen with fear. I didn’t want to move. I told him, “I can’t. If I move it will shock me.” and he said, “I think it’s going to shock you anyway until we get it turned off. You need to get inside.” And I just shook my head. But then I received another hit, and I hurried onto the bed. At that point I decided it was useless. Nothing I could do was going to make it stop. I needed their help. So they rushed me into a room and suddenly the ER was utter chaos. People were talking to me, to my parents, others were on the phone trying to get ahold of my cardiologist. Someone ran to get the cardiologist that was in the hospital. The nurses were asking me questions and I would try to answer in between shocks but every time it happened, which at this point was at least every 30 seconds, I couldn’t help but scream and beg everyone to make it stop. There were nurses holding my body down, and my mom laying over me holding the magnet, trying to make it work, HOPING it would somehow start working and shut it off. I saw my dad just standing there, his face in complete horror. I knew he felt helpless and it was killing him. I started screaming, “Just put me to sleep!!! PUT ME TO SLEEP!!” At which point the doctor leaned over my head and looked right at me saying, “ShaNae, you’re pregnant. We can’t put you to sleep. But we are going to give you some sedatives to try and make you relax.” The nurses had already started an IV, thank heaven. I remember tasting blood and asking my mom, “Am I bleeding?” And she said, “Yes, ShaNae. You bite your tongue every time you’re shocked. Your mouth is bleeding. But it’s okay, don’t worry about it” I couldn’t believe what was happening. It was a total nightmare. And no one knew what to do. This had NEVER happened before. The last thing I remember is the doctor coming back to tell me I needed to calm down. That giving birth was going to be worse than this. And let me just say that had I been capable, he would have been knocked cold. I would have ATTACKED him with something, I was BEYOND furious when he said that to me. My mom was too, I saw it in her face. He had NO IDEA what it felt like, and had I been able to speak at that point I would have told him to lie on the bed next to mine and have a nurse shock him with a hospital defibrillator each time I was shocked. THEN he could tell me if I still needed to calm down. And before I go on I have to say, I did give birth, four months later. It was painful of course, but NO WHERE NEAR what I experienced in that ER.
Anyway, the rest of my time in the ER is history. I don’t remember it. The medicine they gave me caused me to lose most of that memory, which I’m grateful for. But I do know what took place leading up to my next memory, which was waking up inside a hospital room at IMC in Murray. Turns out the only guy with the machine to turn off my ICD was up in Riverton. So, they got a hold of him and he booked it down to American Fork within twenty minutes. Once he was there he tried for at least ten minutes to shut me off, but it wasn’t working. When it finally did work, the machine showed I only had a couple minutes of battery life left. In other words, had he not arrived in time, the shocks would have stopped soon anyway because the ICD was almost completely out of battery. The machine showed I had been shocked over 75 times in the course of an hour. My body had been worn to its limits from the inside. I lay there completely asleep for the next day and a half. I was told that before that man arrived, my dad had called in my Uncle Blake up from Orem and my Bishop to come in and help him give me a blessing. They administered one amidst all the chaos as I was being electrocuted. My uncle and Bishop had to leave the room as soon as they were finished. They said it was too hard for them to watch. My dad was the same. He couldn’t stay in the room and watch what was happening to me. His urges to grab a scalpel and cut out my defibrillator were too strong. Or so he says…So anyway. Once things died down in the ER they transferred me up to Primary Children’s Medical Center where we were quickly turned away because I was pregnant. Duh…that was all just miscommunication. If I had been awake I would have told them to take me straight to IMC. That’s where I had been seeing my OBGYN and cardiologist for the pregnancy. And like I said, I woke up a day later in a hospital bed with my mom sitting in the room.
I remember taking a minute to come to my senses and remember what had happened and where I was before something hit me. I turned to mom to scream, “She’s alive, please tell me she’s alive!” I had an overwhelming fear that all those electrocutions had somehow killed the baby growing inside me. Little did I know that the amount of fluid inside my belly was exactly what saved her. My mom said, “No, ShaNae. She’s fine. I’ll even get the nurse to come in and let you listen to her heart if you’d like.” Of course I nodded my head YES. Not long after that did a nurse have a tiny device on my stomach that echoed the sounds of my baby’s heartbeat. Only then did I calm down and start to take notice to the pain radiating throughout my left side. I looked down at my left arm. It was HUGE! And multicolored! My entire left side ached like I had been in a fight. I looked the part too. I was badly bruised. A doctor came in and explained that the shocks had badly damaged all the nerves in my left arm up to my shoulder. And the multi-coloring was just bad internal bruising. I could barely use my left arm, I couldn’t even squeeze my fist. Part of that was due to nerve damage but also because my fingers were so swollen they practically touched each other when spread apart. They predicted three months until my arm would shrink back to its normal size. And several years until I would regain all the feeling in my arm and hand. They gave me a few stress balls that I would practice squeezing for the next several weeks to regain the feeling in my hand. When everything was explained to me I was just grateful Sophie was alive, and that the damage done to my insides wasn’t permanent.
The next day the doctors who had been consulting on my case came into my room and explained my three options. The first, was to have my defibrillator taken out and refuse a new one and still go through with the pregnancy even though my risks (especially without a defibrillator) were extremely high. The second was to take it out, receive a new one from a different company (that was my special request), and move forward with the pregnancy as planned. And the third was to take it out, refuse a new one and terminate the pregnancy to eliminate risking my own life during delivery. I was heart broken. None of my options sounded ideal. I was ABSOLUTELY TERRIFIED of these devices and wanted it out of me, FOREVER. The very thought of putting one back inside my body made my stomach churn. They tried to reassure me that an incident like mine had a one in a billion chance of happening again, to anyone for that matter. They said the leads (the wires that hooked from my ICD into my heart) were in recall, which I was unaware of. They also said that my magnet should have worked. They had no answers for me as to WHY any of it happened. They hypothesized that my recalled leads fractured and the ICD was placed too far beneath my shoulder muscles for the magnet’s strength to reach it. But that is still just a theory. So, with no answers to give me total and complete reassurance I had to convince myself that God knew I knew what it felt like to be shocked, and that to feel it again would be completely unnecessary:) So, I opted for choice number two. The next day I was given a new device and discharged from the hospital 48 hours later with SIX of my new best friends…donut-shaped magnets:)
My dad and I were discharged from IMC just before midnight because I threatened to walk out if they didn’t sign my discharge papers. Upon which they said our insurance wouldn’t cover a penny if I did. So I tore everything they had me hooked to and sat in my doorway until they got me out of there. It was their mistake I didn’t get out earlier anyway. My doctor said I’d be out by six p.m. but due to lack of communication the papers never got signed and they told me to just stay overnight. I wanted to be home SO bad. Sounds cheesy, but I wanted my Mom too. I NEEDED my mom. So, my nice and helpful male nurse made sure he got me out, even after hours. The drive home was quiet. My dad and I didn’t say a word. I cried silently as I thanked my Heavenly Father over and over again for saving my life and sending me home. And then I asked Him to bless all the nurses back at the hospital who had to put up with me, praying they would forget my trouble and have a nice, easy remainder of their shift. As we pulled into our drive way I immediately fell into an unexpected panic. I started to relive the last night I was home, I even began to shake. I was doing pretty well until I walked up our front steps and remembered falling there as Brayden tried to lift me to the truck. Then my mom opened the door and I literally just collapsed into her arms and sobbed and sobbed forever. My mom has a habit of being able to purge my emotions and make me cry. I couldn’t help it. The tears just came and didn’t stop. She walked me to my room and sat next to me on my bed until I could speak. We only talked for a bit before I was exhausted and fell asleep.
A few days later I met up with my cardiologist at Primary Children’s to go over what happened and run a few tests. She really just wanted to see me and make sure I was okay and that my arm wasn’t getting worse. I’ll never forget that meeting. It was then that she informed me of the miracles I had been unaware of. First she told me that going under anesthesia for surgery while pregnant is a huge risk for anyone. But that if a woman is to require it at any time, the exact number of weeks at which I was at was the most ideal for me and the baby. Had it been any other time, the risks would have been deadly. But more importantly, Sophie had saved my life. The fluid that surrounded my heart at that point in my pregnancy had created a barrier that protected my heart from the shocks of my ICD. Had that barrier not been there, my heart would have literally been fried from the inside out. I couldn’t believe what she was telling me. Sophie had already saved my life, by changing me completely. But here she’d done it again. She was a miracle baby and I knew it. I don’t like to say it was all meant to happen because I don’t think God ever intended me to make those kind of mistakes. But I can’t help but think that because I did, and pregnancy followed, God took it into His own hands to weave a special story with experiences I’ll never forget.
Now, two and a half years later I still hate my ICD. Only because I’m scared of what it can do. When I first got home from the incident I struggled with sleep for over a year. I would have terrible nightmares about being shocked and I’d awake in a panic. If I thought about my ICD at all I would get anxious and scared to move. I would often stop breathing and get dizzy without realizing what I was doing. For a long time I was terrified of going places. I didn’t want to experience another shock at all, but the thought of doing it in public made it sound ten times worse. I sought help from a therapist who really changed my life. She was wonderful. She helped me recognize my PTSD for what it was, and learn how to deal with what happened. She taught me ways I could keep my anxiety under control and even methods that helped me sleep without nightmares. I don’t know what I would have done without her. No one in my family knew how to deal with me or help me. Quite frankly, my parents needed the help too. They experienced a form of PTSD themselves and walked on eggshells around me for a long time. Anytime I heard a loud, sudden BANG I would start to panic because the noise was reminiscent of what I heard in my head each time I was shocked. I remember one time, only a few weeks after the incident, my dad dropped a pile of books on our hard wood floor. I didn’t see what happened, I only heard the noise and boy did I panic. My dad tried earnestly to calm me down and promised he’d be more careful. My parents and siblings were a little traumatized from what took place. And we all needed the help I brought home from my therapy sessions. I can never thank my therapist enough for what she helped our family through.
I did a little research on PTSD after my incident and found lots of stories online that helped me feel like I wasn't alone. I needed reassurance that what I was experiencing didn't make me 'weird' or a 'freak'. When I was able to sit down with my cousin and relate with him about panic attacks, nightmares, and strange agoraphobia it really helped me understand that millions of people have experienced one form or another of PTSD and I could move past it at my own rate. I sometimes get angry when I think about that night. To this day I don’t understand why any of it had to happen. But to be honest I can’t imagine my life without that story in it. I can now empathize with that many more people. I can now connect with that many more lives. I learned SO MUCH. I’ve built bridges between myself and lots of other networks because of what took place. And maybe someday those networks will be exactly what I need in a time of crisis. We’ll just have to see. I’m grateful for what I learned and who I met. When I focus on that the experience seems a lot less traumatizing and I feel much more gratitude over grief. And like the words in the quote below I value this experience because I know it's not what I asked for, but I learned so much, I can't help but think maybe it's what I needed.