Well before I delve into my surgeries and update you on my health, I want to begin by sharing something I wrote a couple of months ago about my experience of getting shocked, and the mental anguish that accompanied it.. The first half of this post gives a good insight into the daily struggle people go through that have been shocked living with a defibrillator. The second half talks about my surgeries and my recovery.
PART I:
At the beginning of May, my defibrillator went off and shocked me two times leading to a four night stay in the hospital. This was the second time I had been shocked by my device, the first set of shocks occurred in late March. However, this second time, I was just lying in bed around 11pm, painting my sunglasses getting ready to fall asleep, when suddenly I felt my breath taken away from me. I said to myself, "That doesn't feel right." and then a couple minutes later BAM! I was shocked. Now the usual comparison to being shocked is like being kicked in the chest by a mule, but I would much rather be kicked in the chest by a donkey than be shocked. Being shocked is more like being electrocuted, it's like lightning going off inside your body. It's a very loud popping sound accompanied by a white light that comes over you and the whole effect makes you scream. Needless to say it is very painful and unnerving. Ten minutes after the first shock, BAM, I got shocked again. And then another ten minutes passed before EMS finally arrived and transported me to the hospital. The bad thing about that, is our house is a good thirty minutes away from the hospital, and this didn't constitute as an emergency so we had to abide by the speed limits and stop lights. During the ride I kept having spurts of V-Tach, and each time I felt as though I was going to be shocked again. I was scared out of my mind. So much so that when I was admitted into the hospital and my vitals were being checked, I screamed when my blood pressure cuff began to inflate thinking I was about to get shocked again. Any sudden sounds, sudden movements were causing me to jump, to be scared, so they eventually gave me a shot of Adevane, which is an anti-anxiety drug, stronger than Xanax, that is fast acting; and it indeed calmed me down.
At the beginning of May, my defibrillator went off and shocked me two times leading to a four night stay in the hospital. This was the second time I had been shocked by my device, the first set of shocks occurred in late March. However, this second time, I was just lying in bed around 11pm, painting my sunglasses getting ready to fall asleep, when suddenly I felt my breath taken away from me. I said to myself, "That doesn't feel right." and then a couple minutes later BAM! I was shocked. Now the usual comparison to being shocked is like being kicked in the chest by a mule, but I would much rather be kicked in the chest by a donkey than be shocked. Being shocked is more like being electrocuted, it's like lightning going off inside your body. It's a very loud popping sound accompanied by a white light that comes over you and the whole effect makes you scream. Needless to say it is very painful and unnerving. Ten minutes after the first shock, BAM, I got shocked again. And then another ten minutes passed before EMS finally arrived and transported me to the hospital. The bad thing about that, is our house is a good thirty minutes away from the hospital, and this didn't constitute as an emergency so we had to abide by the speed limits and stop lights. During the ride I kept having spurts of V-Tach, and each time I felt as though I was going to be shocked again. I was scared out of my mind. So much so that when I was admitted into the hospital and my vitals were being checked, I screamed when my blood pressure cuff began to inflate thinking I was about to get shocked again. Any sudden sounds, sudden movements were causing me to jump, to be scared, so they eventually gave me a shot of Adevane, which is an anti-anxiety drug, stronger than Xanax, that is fast acting; and it indeed calmed me down.
In March, when my defibrillator went off for the first time, I was shocked four times, but I handled the situation amazingly well. This time was different, this time I was shocked at night, in the safe haven of my bed. I was shocked when I was at my calmest, just about ready to call it a night. The first time I was shocked, I was hanging out with friends in the middle of the afternoon, therefore, I found reason behind the shock, whereas this time I was doing absolutely nothing, there was no reasoning, so I thought. That is why this past episode of being shock has been a much more tumultuous time, because I was shocked doing nothing. And so now I feel like I will be shocked at any point in time. It's very hard to think about, the powerlessness and the pain. There is an electronic device inside my chest wired to my heart and if for some reason my heart beats faster than a certain programmed number then I will receive a horrible shock to my body.
But we now know the cause of the shocks was due to critically low potassium, which in turn is due to a genetic kidney disorder that I have had since birth, but only now discovered. My kidneys are unable to store potassium and magnesium on their own, and those two elements are such a crucial part to keeping a heart ticking normally. The kidney disorder combined with my heart disease makes for a double whammy. I must say it's a relief to have this finally figured out, albeit it's a little disappointing this was not spotted years or even months earlier, and it is also disappointing that I will have to take large doses of medicine perpetually to keep my kidneys functioning. Also, there is no home test to check your potassium levels similar to a diabetic even though the technology is out there, so I will constantly have to have my blood checked. If my potassium becomes too high or too low, I have the risk of being shocked again, and that scares me.
Everyday brews a mental struggle, wondering what will trigger the device and when the next time the device will activate. The unknown is unbelievably frightful, not knowing when the shocks will begin or end. Being shocked is always on my mind, and when I go to sleep, the night that I was shocked replays over and over in my mind. Every night I lay awake, scared of a device implanted inside my chest, scared of its' capabilities. The fact that it can shock me while I am dormant upon my bed now haunts me. At night, when it's quiet and dark and I'm about to fall asleep, my brain seems to speak very loudly in those times and it is those times where I feel each and every heart beat with great intensity. With every skipped heartbeat comes a triggered memory of being shocked, which then increases the anxiety to maximum levels, which increases the adrenaline levels, which increases the heart rate. It's an evil little circle that I haven't quite been able to escape. I try to think about other things, read books, listen to music, watch t.v., and for instance, write this passage in hopes of uncaging some of the grief that lingers. At the end of the day though, I need to be able to trust the device, to trust it will act appropriately, and act only when needed. But what I really need to do, is find a way to unleash the grip that fear has on me, so I can start mentally living again. So I can feel free again.
But we now know the cause of the shocks was due to critically low potassium, which in turn is due to a genetic kidney disorder that I have had since birth, but only now discovered. My kidneys are unable to store potassium and magnesium on their own, and those two elements are such a crucial part to keeping a heart ticking normally. The kidney disorder combined with my heart disease makes for a double whammy. I must say it's a relief to have this finally figured out, albeit it's a little disappointing this was not spotted years or even months earlier, and it is also disappointing that I will have to take large doses of medicine perpetually to keep my kidneys functioning. Also, there is no home test to check your potassium levels similar to a diabetic even though the technology is out there, so I will constantly have to have my blood checked. If my potassium becomes too high or too low, I have the risk of being shocked again, and that scares me.
Everyday brews a mental struggle, wondering what will trigger the device and when the next time the device will activate. The unknown is unbelievably frightful, not knowing when the shocks will begin or end. Being shocked is always on my mind, and when I go to sleep, the night that I was shocked replays over and over in my mind. Every night I lay awake, scared of a device implanted inside my chest, scared of its' capabilities. The fact that it can shock me while I am dormant upon my bed now haunts me. At night, when it's quiet and dark and I'm about to fall asleep, my brain seems to speak very loudly in those times and it is those times where I feel each and every heart beat with great intensity. With every skipped heartbeat comes a triggered memory of being shocked, which then increases the anxiety to maximum levels, which increases the adrenaline levels, which increases the heart rate. It's an evil little circle that I haven't quite been able to escape. I try to think about other things, read books, listen to music, watch t.v., and for instance, write this passage in hopes of uncaging some of the grief that lingers. At the end of the day though, I need to be able to trust the device, to trust it will act appropriately, and act only when needed. But what I really need to do, is find a way to unleash the grip that fear has on me, so I can start mentally living again. So I can feel free again.
The past two months, I not only had to deal with my heart disease but also the malfunction of my gallbladder and its' painful side effects. The pain eventually changed my diet into a soup and cereal diet with some baked chicken here and there. The symptoms ranged from intense sharp stomach pains, cold sweats, sharp shooting pains throughout my chest and back and the worst of all, it made my heart feel as though it was palpitating, causing extra anxiety. At times, I was unable to differentiate between the heart palpitations of my heart disease or if it was simply a symptom of the gallbladder. My gallbladder episodes started to scare me so much that I would start to shake, fearing I would receive a shock from my device. That's how much, I live in fear of this damn thing, but I need not to. I need to trust that it's doing its job, that it will only go off when my heart rate reaches a certain number. I need to believe that I can live my life without fear of being shocked. I have to somehow break free from the fear, but that I found has been that hardest part of this long journey of mine. I've never really had any fears, at least ones that I was confronted with, but this one sure has been a ball and chain on my mind and emotions as well as my way of living. Once I find a way to rid myself of the fear, I feel I will be free again, and back to a stronger emotional state. I'm walking on eggshells right now, everyday, every minute, I feel as though I'm a ticking time bomb and at any point in time....zap...I'll be shocked again, and that is where all the fear lies, the fear lies in the future, the unexpected, the remembrance. But I have still held my head up high, I have still laughed and smiled, I have still kept my mind active and my spirit high, I will always remain positive, for there is no other way, now if only I could stay healthy, where there is a will there is not always a way.
PART II:
This will hopefully be one of my last health updates for some time, as I am now healing from two successful surgeries regarding my heart and removal of my gallbladder. On July 6th, I underwent major heart surgery that proved to be a success as of now. Johns Hopkins, the ARVD Gods, have only been practicing this type of procedure for four years and have only had 25 patients undergo the surgery. They have also only followed the outcomes of the surgery for the past two years, so due to how new the surgery is and the few number of patients who have had the treatment, the long term outlook is unknown. Some have been shocked since their procedure and others have not, and some have returned to exercise against doctors orders and been shocked. So for now my heart is ticking by itself and I am no longer on my anti-arrhythmic drugs, which is a huge step forward. Ridding myself of the anti-arrhythmics have caused me to feel much healthier, I have an abundance of energy that I have been void of for the past nine months and I feel my head is now clear compared to as before it felt as though there was a pile of bricks in place of my brain.
The surgery successfully burned/killed off the cells on the outside of my heart that were causing the tachycardia, the racing of my heart. The surgery lasted ten hours, one of their longest but that is because there were so many problematic cells around my heart. There were three major cluster of cells causing my arrhythmia's, but one in particular was centered around my major artery. Due to the severe risk of burning the artery causing a heart attack or worst, the cells on the outside of the heart had to be burned from the inside, which was a very long process. Now that the cells have been killed, there is no chance they will grow back. Once they are gone, they are indeed gone. The main concern now is the growth and development of the dysplasia/cardiomyopathy, the scarring of the right and left ventricle. It has potential to grow over the years, and it most certainly will grow if I participate in any kind of exercise. As with this disease, when the heart expands and contracts, my heart does not always contract. It stays expanded causing the scarring, and within the scarring the electrical circuits of the heart get trapped causing tachycardia. So I will always have to have quarterly and annual tests to keep track of my heart rhythms and my dysplasia. But for now I continue to take one day at a time, and am very lucky that the surgery worked. Not only am I lucky but I am thankful to the wonderful doctors at Johns Hopkins who are more than dedicated to each patient with this disease and I am very thankful to be off my anti-arrythmics. Anti-arrhythmics are some of the strongest, most brutal, most side effect causing drugs out there, and I feel almost like my old self being off of them.
Even though I am very thankful to be off my anti-arrhythmics, I am still rather anxious at the same time, mainly because I am scared about getting shocked more so than anything. It is pretty amazing to go from taking a high dose of medicine four times a day just to keep your heart ticking somewhat normal, to the next day having your heart tick by itself with no heart medicine. Besides the anxiety, my recovery was a little rough. The worst pain was caused by my eyes, one of my corneas ended up becoming scratched causing severe intense pain for almost two days. My eyes were tapped shut and therefore stopped producing tears during the surgery but they were not expecting the procedure to last ten hours and did not plan on my eyes to be a problem. Because of the lack of moisture my eyelids ended cutting my eyes causing severe pain. I also suffered from pericarditis, which is intense chest pain caused from the burning of the outside lining of the heart. That finally went away after about three weeks. Between the pain in my eye and the pain in my chest I was being given an IV of morphine every three hours on the dot. Even with all the morphine I was receiving I was still in immense pain the day after surgery, the morphine was also causing me to have a migraine. But throughout the day I kept my eyes closed and tried to sleep away the day.
After two nights in the hospital, I was on my way home, but the journey was not quite over. On top of the pain I was having from the surgery, I was experiencing horrible symptoms from an ill-working gallbladder. So one week after my heart surgery, out came by gallbladder. The recovery from that was also very painful and lasted about two weeks, but my insides feel 100% better. So I am happy to say each day I feel healthier and I feel stronger, and I am just relieved both surgeries went well and that I am now starting to feel like myself again.
I had my one month check up of my heart and so far everything looks good. My doctor doesn't want me to start going on walks until winter, when the heat passes, so until then I will work on the hardest struggle of my journey so far, building my confidence, and to do that I will just have to take one day at a time. Confidence is the most important aspect to my recovery, both physically and mentally, and I am fully aware that I cannot live in fear of this device any longer. And with that said, my plan for now is to enjoy and celebrate the present, and just take it hour by hour, day by day. So for now I bide my time with different hobbies of cooking, making jewelry, growing chia pets, attempting to sew, reading, playing guitar, watching movies, and spending quality time with my family. Without the support of my family and all of my friends, this journey would have been much much harder. I just hope one day, I will be able to rejoin my loving free-spirited friends of the west coast! Thanks to all!
MUCH LOVE!!!!
