The shocks started at 6:50 am.
I wanted to text my husband at his hotel to let him know I had a good night and that I was awake. I sat up in bed and noticed out of the corner of my eye that the red light on the monitor was going off, upon looking closer, my heart rate was over 120 beats, I was surprised but sat on the edge of the bed until it came down to around 60. I needed to get my cell phone out of my bedside closet which required walking around my bed and digging through my bag, I no sooner reached the closet and opened the door and I realized that I was in trouble…I felt my heart jumping like jello in my chest and needed to get myself safe or I would end up on the floor and possibly injured. I jumped over the rail of the bed and just as I hit the mattress, I got the first jolt from my ICD, I was awake and it hurt like hell. I liken it to someone holding a large elastic band, one end on my chest as they pull it out as far as it will go, then they release it, it’s like a really hard snapping feeling. This was the first of many.
I had been admitted to the hospital on December 16th and my arrhythmia medication had been stopped. My procedure, a VF (ventricular fibrillation) ablation was to take place on December 18 and the doctor wanted to be sure that the meds were out of my system so that they could have a better chance of seeing the bad pathways in my heart that allowed my heart’s rhythm to go out of whack. It’s very common for them to do this prior to the procedure and we were all shocked that my heart reacted the way it did so quickly. Within the first hour, I experienced more than 20 shocks and the nursing staff on the cardiac ward quickly realized that I needed to be moved to CCU, I wasn’t their typical patient any longer and I could hear many of them talking about how traumatized they were after watching this happen to me. Every time my heart rate went into the danger zone lights would flash and alarms would sound and everyone would come running. I have a device that is meant to deal with my arrhythmia but there was the slightest of chance that they may need to intervene with a crash cart if the device was unable to get me back into sinus rhythm. I heard the nurse call my husband, I could only imagine how worried and panicked he would be, the nurse told him she would escort him to CCU once he arrived.
Once all the arrangements were made, I was transferred to the Cardiac Care Unit, the nurse/patient ratio was smaller there and they are used to dealing with the things that were going on with me. The shocks kept coming in waves, I was no longer awake for any of them as I had been for quite a few from the first hour, each time my heart would beat so fast that there was no longer blood going from one ventricle to another, I would fade into unconsciousness, the device would shock me and I would awaken, this went on for most of the morning. It got so bad at one point that they had to shut off all the lights in my room, close the curtains, there could be no noise and the nurse just stationed herself at my bedside, my heart was so aggravated that the slightest thing would set me off. Prior to leaving the Cardiac ward, I had been catheterized and thankfully they had the foresight to do that, now I was being heavily sedated. I was at the point of exhaustion and apparently both the nurse and my husband were pleading with the doctor to do something to stop the madness but the doctor was hesitant to put me back on my meds because they were trying to clear a spot in the Cath Lab for me that day to do the procedure and he didn’t want to stifle the arrhythmia to the point that they were unsuccessful. When it became apparent that they would have to wait until the next day,they put me back on a low dose of my heart medication, at this point things slowed down but I continued to have frequent shocks. My husband said he stopped counting at 70 that day. I was grateful to be so heavily sedated.
I don’t remember much from there, I faded in and out, at one point, my husband was by my side holding my hand playing some soft ambient music to sooth me. I am sure it helped him as much as it did me, he has seen me go through this so much over the course of the past 3 years that he suffers from PTSD the same as I do. It’s hard for him. I remember at one point, after a shock, I told him I was scared, I have never expressed that to him before despite all I had been through and he was terrified that I was going to give up.
I vaguely remember being moved to the Cath Lab for the procedure the next day and being told that they were going to leave my device on. The last time I had this done, my device was disabled and replaced with external defibrillator pads and then they must have put me out. I woke up crying, my chest was stinging, I had obviously been shocked but not by my device, I quickly realized that they were using external pads at this point and the electricity was connecting with the sweat between the pad and my skin, it was painful. The doctor started talking to me, he was saying that we had been in the lab for 4 hours and he had burned 30 spots inside my heart, he said he was burning one at that moment and asked me if I could feel it, I certainly could. He also said that every time he burned a spot, another would pop up, he was chasing something that couldn’t be caught. It was decided that there was no point in keeping this up, I was worn right out, the procedure was deemed unsuccessful and I was moved back to CCU.
I continued to receive shocks the rest of that day, night and into Friday morning. My device battery was dangerously low from administering so many treatments and the decision was made to give me a new device rather than simply change the battery. When implanted, these devices are meant to reside for 10 years or more until they need a battery replacement, mine was dead in just under 3 years. I was scheduled for replacement on Saturday December 20th. I don’t remember much during the time between my visit to the Cath Lab on thursday and my trip back on Saturday for my device swap, but there is a picture of me smiling and waving for the camera just before they took me to have this done. I am now the proud owner of a new St Jude Medical device, now with an atrial lead as well as one was put in with the new device. I’ve been told it’s because there may need to be med changes in the future and they may need to pace the top of my heart, they would use the new lead to do that.
I would not be surprised to find that the final tally for shocks was in the 100 range and for something that gave us so much hope, it turned out to be a very horrendous experience, one that has left us both shell shocked and still trying hard to deal with. In fact, it’s now 5 weeks today after the procedure and I finally felt I had that strength to sit in it and write about my experience.
Up until this point, I have been quite happy to be a science project and to go through all of this for the greater good of patients like me in the future, but I’m afraid that at this point in time, I don’t want to be an experiment. I have participated in every study and have agreed to many experimental treatments in hopes that I pave the way for the next person experiencing this illness. Tomorrow I have an appointment with my Electrophysiologist, the doctor that sent me for this procedure and we hope to get some answers as to how things went so incredibly wrong and what to expect in the future, but I am sure, only time will tell. I really hope there is some stability.
I have a hard time especially at night, I am so afraid that I am going to die so every morning that I open my eyes, I am grateful. They say time heals all wounds but it’s going to take both of us a very long time to get over this. It’s been a long road and we were so hopeful that this was going to be the answer to getting our lives back in some way. We live one day at a time and I never in a million years expected that I had the strength to deal with something as life changing as this.
Please don’t take today or tomorrow for granted.