My Heart

Heart

It was a life altering event in history. 9/11. But, September 11, 2001 meant something else to me as well. I was asleep in my college dorm room and around 2 am I received a phone call. It was my Step-Dad; he told me my brother has had a heart attack. He was only 16! I hung up the phone in disbelief. I sat there for a few minutes. Then I called my Step-Dad back thinking he must be pulling some kind of prank. But, he ensured me it was true and my Mom was getting ready to head to the airport with my grandparents. My brother was living with my Dad in another province. After I hung up the second time the news really hit me. I sat there in the dark, alone, on my bed crying. I eventually cried myself to sleep.

The next morning I awoke a little numb, worried. Was my brother even alive? I got dressed and headed to the cafeteria. There was some hype happening. What was going on? I sat down with some friendly faces and was informed about the World Trade Center and the stuff that was happening as we ate. Worried for the world like many were that day - I feared for my Mom and Grandparents as they were in the air at the time of the attacks.

A couple hours later I got a welcomed visit from my Aunt and Cousin. They came to campus to make sure I was okay. We received confirmation that my brother had been dead for 8 minutes but miraculously suffered no damage from that. He had a cardiac arrest while rollerblading. He was in ICU receiving tests and doctors were trying to decide the best course of treatment.

It turned out that the cardiologist where my Brother was was incapable of repairing Jason's heart. So instead of being logical and shipping him to a city near my home town, which was basically the Capitol of Canada for heart surgery with a renowned surgeon, they shipped him to across the country because that is where a good friend and colleague of the cardiologist's was. So, my Brother and Mom flew in Stars across the country. It was discovered my brother had Hypertrophic Obstructive Cardiomyopathy (HOCM). It was hereditary. My Dad was diagnosed with Hypertrophic Cardiomyopathy (HCM) more than a decade before. But we were never told about the great hereditary factor. In fact, my Mom was told when I was little, as my heart was checked when I was about 5, that only boys could carry this defect. But no doctors warned about the severity of the disease. It was not as predominant as it is today. So, I nor my siblings were tested. Even after my Dad's condition worsened when I was around 10 years old, and needed open heart surgery, there was no mention of us children needing checked.

So my Brother had surgery; they needed to slice some of the enlarged septum (the heart muscle or myocardium in the middle of the heart) which is the defining factor of HCM. This abnormally thickened heart muscle can make it harder for the heart to pump blood. HOCM is an obstruction of flow added into the HCM. I am not positive what my Brother's obstruction was though.

While with my Brother was in recovery, my Mom was informed that we, my siblings and myself, needed to be checked for HCM as soon as possible. So, a couple months after Jason's cardiac arrest we were all scheduled for an electrocardiogram (EKG - looks at the electrical activity of the heart) and an echocardiogram (ECHO - quite simply an ultrasound of the heart.) My youngest brother showed no signs of HCM. My sister showed the beginnings of the condition. Both were to be monitored yearly as the condition usually progressed when you moved into you mid and late teens.

I, on the other hand, was given news that felt like my life was being ripped away. My Mom and I sat in the cardiologists office as he explained my condition and the immediate need to operate. I had tears rolling down my face. Not due to the presence of the disease but because I was told I NEEDED to stop playing hockey. I had HOCM. My heart muscle was abnormally enlarged and I had a valve that needed fixed. But, I loved hockey. I was playing college hockey. My athletic skills were improving with each practice, each game. After we left the hospital for home we stopped at my Step-Grandparents house. There I called my Coach. With heartbreak I informed her I was done for the season.

Although, my cardiologist recommended surgery as soon as possible my Mom convinced them to wait until Christmas break. It was my 1st year of college and she did not want me to fall behind. On Dec 19, 2001 when I was 18 years old I went to the University of Alberta to have open heart surgery, performed by the same surgeon who cut open my father, and to get an Implanted Cardio-defibrillator (ICD) put in my chest. I remember when I got to the hospital I was instructed to shower and wash my chest, neck, shoulders, and arms in iodine. Then I put on my gown. At this point we, my Mom and I, figured I was only going in for the open heart surgery but instead we had an information session about the ICD placement. We weighed the benefits and the cons and my Mother and I decided to have the ICD placed. I recall being wheeled on my bed to a room, that had classical type music, half dazed to meet my surgeon. Then soon after a mask was put on my face and I was told to count down and before I knew it I woke up with a tube down my throat and throbbing pain in my chest and especially in my shoulder. As soon as I woke, under those bright lights, I remember motioning to the tube in my throat. The nurses, as well as my Mom and maybe my Step-Dad were there. They promptly said yes it can come out and they told me to cough and out it came. My throat was raw. I wanted a lot of water right away but had to settle for small sips. I do not think I was in the intensive care unit long after surgery but who knows as was tired and sore so slept a lot. I remember periodically asking for more morphine to try to mask the pain. I think it was day 2 after surgery that my Step-Dad commented that I must be in a little less pain. As those first few days consisted of a lot of napping, and while I napped I always had a huge frown on my face. But eventually that frown lessened. I also think it was the day after surgery when it was time to sit up. I remember being given a heart pillow and while sitting in my chair I was to hug it tight and try to hork a loogie. That was painful. I said a lot of choice words in my head to the nurses and doctors. I would of liked to see them try to cough that hard after having a rib spreader taken to their ribs! I also recall having this tiny contraption I had to breathe into to try to float a ball. I was never very good at it. I recall a couple days after surgery having to cough again to remove my chest tube. Another thing I remember is being sent for a chest x-rays a few days after surgery. The main floor of the hospital was small tiles so needless to say the ride on that bed was horrifically painful. And then for a chest xray your arms need to be in the air also - that hurt bad.

Another trying thing was having to walk. They either had me walking the day after surgery or the next day. I know one time I made rounds with my Coach as she had come to visit me. I remember my Mom helping me shower once or twice. I had no mobility in my left arm, more appropriately shoulder. I recall asking my doctor why? Why when my ribs were cracked open why does my shoulder hurt the most. He motioned with his hand how he had to rip the muscle to insert the ICD. I was athletic and did have a lot of muscle compared to most people who receive such devices. To demonstrate in words of how my muscle was ripped: take a bun; now with your 3 middle fingers poke the top inch of the bun, now move your fingers back and forth to make about a half or so inch gap. You pull a small muscle and the pain can be bad but my muscle was really ripped.

I remember that all my nurses were awesome, every shift, except the morning I got to leave. That male nurse was an asshole. Normally they would not have discharged a patient who had my procedures until Dec 25th, a full 5 days after surgery, but because I was young and recovering quickly they sent me home on the morning of the 24th so I could be home for Christmas. I dreadfully recall the ride home. Tired, in pain and driving in a pick up truck that caused pain with every pothole, every crack, every stop, every curve in the road. At home sleeping was not comfortable either. Nothing was comfortable. Eventually it all became more comfortable of course but was not something I wanted to do again.

I started back to college a week into the new year. My Mom hung around campus the first day to make sure I could cope. I remember my first class back was a history class and the room was packed. Enrollment was more than expected. I was one of the last ones to get to class so all the seats were taken. Some students were sitting on the floor. So me, being stubborn, just sat on the floor as well. That was not the smartest move after having surgery 2 weeks prior. My Mom asked why didn't you ask another student to give up their seat. Because Mom, I am fricking tough and did not want to be 'that student.' But I should have been 'that student."

Years later during one of our moves I decided to read some of my diary I had in High School with my husband. There was more than a couple instances where I complained of chest pain. I guess I thought it was normal as I never told my Mom about this pain. Just assumed all teens had chest pain if they physically exerted themselves too much.

After surgery, painful days turned into less painful weeks, and even less painful months. I was basically back doing everything I was doing before surgery. I was back that summer to work at the Lake. I remember though, at one point, my boss and I were splitting firewood. He would place the ax upon the wood and I would repeatedly bring the sledgehammer down on the ax eventually cutting through the large logs. But one day doing this I had to stop. Something was not right. I was scared. Whenever I tried to take in anything more than a shallow breath it hurt. So to the doctor I went. Thankfully the only cause was a badly pulled heart muscle. You think that would have made me slow down but nope I kept using my shoulders. Kept doing chest exercises. My theory was that I would fix and rebuild those muscles the surgeon tore. I did chairs dips and push ups and any chest exercises I needed too. I was not told any different. I was only warned about issues regarding my ICD such as do not be too close to large power lines, do not use a cell phone too much on the left ear, use extra caution when using jumper cables, etc. Those ICDs in the early 2000s came with warnings. Luckily ones today can withstand most things, they potentially will not even hurt you if you walk through airport security accidentally. I was, also back to playing hockey the fall after surgery with a competitive women's rec team.

So, working out and all that overrated stuff was all fine and dandy but I remember being upset that I could not return to my pre-surgery weight. The having to do 'nothing' for a couple months, the permanent slowing of my heart rate, and the medication, none of it helped me stay thin. I was 20 pounds heavier then when I graduated. Then, in 2005 I arrive for an ICD check up (it happened every 6 months) and find out that my working out, trying to lose weight, trying to get back into shape, had backfired. They hooked me up to test the ICD, but, could not find a signal. I went for a chest x-ray. I had pinched one of my leads; due to push ups and other such chest/shoulder activities. So I was hospitalized and underwent my first ICD replacement. They needed to put in a new lead so gave me a new machine and battery hoping to prolong the length of time before the next replacement. I recall waking up from surgery very upset asking my Mom why? Why does this hurt so much? It was a replacement? So why this pain. I told her I can NOT do this every 5 to 8 years. We found out the increased pain was because the ICD had muscle grown around it so the muscle was re-ripped. And since another lead needed to be placed in my vein that caused more pain. But the recovery was a measly 2 to 3 weeks compared to the 6 to 8 week recovery 4 years ago. I remember starting back to work at Superstore as a cashier before I was fully recovered and just rang in items with one hand and worked express tills so did not need to deal with heavier items.

For the most part things went back to normal. Then in a hockey tournament late Spring of 2006, if I recall the date accurately, I was playing in the 1st game of the tournament when I dropped. It was an evening game and I drove all day, about 9 hours, myself. My body was most likely overtired from the 9 hr drive and from popping cold medicine. I, many years later, learned that I was not supposed to take cold medicines with the medication, a beta-blocker, I was on. Anyhow, I remember slowly skating up the ice from our defensive end while the puck and other players went to opponents end. Time seemed to stop for a couple seconds. I remember pulling myself up off the ice and skating to the box. My ICD had shocked me. And yes, it is true, the shock felt like an elephant kicked me in the chest. The general rule to follow if the ICD gives a shock you sit for 15 minutes and return to your activity. However, I could not. It hurt too much. It scared me too much. I called my Mom that night frightened that it went off. The next morning I went to the hospital to make sure everything was okay as my chest still hurt. Everything was fine as far as they could tell and I was advised to go to my cardiologist and ICD clinic when I returned home. They also advised I did not drive. So at the conclusion of the tournament one of my teammates drove my car home for me.

As per instruction, I went to my regular hospital and cardiologist to get checked out. They could not determine the exact cause of the shock. Just that the electrical activity of my heart was not 'normal' hence the shock. I was told I could not drive for 3 months. I, of course, did not follow those instructions. However if my machine went off during that period and an accident was caused I would have been at fault.

Then in the fall of 2007 I got married. Had baby number 1 during the summer of 2008. During this time I find out that the ICD put in in 2005 came with a defective lead. Therefore, I had an additional alarm set on my machine that would go off if this defective lead fractured. I got pregnant with baby number two in the summer of 2009. Then, in December of 2009 I was 6 months pregnant and sleeping with my toddler. I was woken in the middle of the night with this beeping sound coming from my chest. I immediately knew what it was. That damn wire had fractured. I could not go back to sleep. I was worried. I knew I was probably going to need another surgery. But, I was pregnant. Not cool. I had the first ICD replaced after 4 years. This one would be replaced after 4 years. What! I was informed these machines would last 5 to 8 years. Why I am having surgery so often! I was mad. I felt like I would never get to live a normal life. It honestly felt like my life revolved around this heart condition. I was no longer doing much physical activity for prevention of not pinching a wire again. But, I had no control over the reason for this replacement.

Eventually, it seemed longer than it was, morning came. My husband and I dropped my toddler off with my Mom and went to the Hospital. My machine was checked and shut off. They did not let me go home for the weekend. I just wanted to come back Monday for the surgery. I had never spent a night away from my daughter. They did not want the ICD left on though due to the fact the lead had fractured and that could cause damage. And they did not agree to let me go anywhere unmonitored. So, I was hooked up to monitors and had to stay as a 6 month pregnant heart patient. Come Monday I was to be scheduled for a replacement but emergency after emergency came in. Usually before a surgery you are not to eat or drink but due to my pregnancy, at least, I did not have to follow those rules as strictly. Finally, as it seemed like forever, I went in for surgery Tuesday morning. I was not put to sleep for the surgery, better for the baby and it was to be a relatively quick procedure. Luckily, I was in my 2nd trimester - the safest trimester to have surgery. The radiation blanket was doubled up to protect my growing boy. I was drugged intravenously to numb me for surgery. However, those drugs were not strong enough. I felt the surgeon cut through my skin. Weird, I thought. I wondered if I was supposed to 'feel' it. Then I felt the pain of muscle ripping. The pain of something being pushed through my vein. I recall telling the nurses I could feel this; was that normal. They tried shooting more drugs into me. But they were being cautious as to not hurt my baby. I ended up just passing out due to the pain.

After the surgery I found out it did not go as smoothly as they hoped because, once again, muscle grew over the machine so they had to dig it out. The doctor wanted an x-ray as well as there were now 3 leads in a single vein in my upper left shoulder but thankfully my favorite ICD technician, Lois, told him no. That if they needed to check it they would do an ultrasound instead as my baby had been already been exposed to enough radiation. So, they did not check it at that moment. A few hours later I went home. My husband stayed home for a few days but then I was able to care for my toddler myself. This surgery seemed less painful then the previous ones at least. Maybe because I could not physically be as active due to being pregnant.

In July 2012 I found out I was pregnant with baby number three. I did not understand why I was SO sick, but mainly just so tired and so weak. I finally got in to see my cardiologist. He was concerned about my heart. He suggested I NOT have anymore children. I had not planned to anyway. I always only ever wanted 3. The reason I felt beyond weak and tired and sick was because my heart was the same. Most people have one leaky heart valve. On a regular day, due to my condition, I have 2. But while pregnant with my third child I had 3 leaky valves. My cardiologist was concerned that this might not fix itself. He said there was a chance that this problem was just because I was pregnant. I hoped that was the reason. I did not want surgery with a newborn. I was in for an EKG and ECHO soon after the birth of my third child. Luckily my heart was back to normal. No surgery needed!

Then, less than a year after baby number three was born I called to make an appointment with my cardiologist. My left arm and hand would occasionally get painfully tingly and numb. I realized this most happened when I played airplane with my baby. I would, usually when laying on my back, fly her in the air, bringing her up above shoulder level and back. So my cardiologist checked things out and concluded that my one wire and repeated surgeries probably pinched a nerve. Made sense to me. I went to physio for a bit. I was also told to avoid lifting my left arm above shoulder level especially with weight. Those muscles, nerves, and veins had been through a lot. Even now I avoid using my left arm much if work is above my head. When I do, such as putting up curtain rods, cleaning ceiling fans, etc. my arm and fingers will occasionally get that painful tingling numbness back.

The next few years I seemed to be doing better. My shoulder and machine bothered me less. My heart rarely had pains. Maybe my body was finally climitizing to the ICD and drugs. Good news was I rarely had 'heart pain' anymore. Maybe once every couple months I would get the feeling of something stinging in my chest. When it happens I can not take a deep breathe in for a while - anywhere from 10 seconds to my longest one that was about 20 minutes. The 20 minute one turned up as an episode on my ICD activity; the others never have. I remember these sharp pains happening sometimes in front of my husband. I basically would stop moving or talking until it ceased. I recall one at work when I was in the kitchen with 2 coworkers. I was about to roll the cart of salads out when it happened. I motioned to my coworker to take the cart. They both looked at me worried but I said I was okay and motioned them to go serve. I was better and able to help in less than a minute.

My Father, who passed the HCM down to me and my siblings, received a heart transplant on December 23, 2016 at the age of 53 after being on the list for over a year. Had he not received it when he did he most likely would not have made it. I hope my condition holds out longer than his did. But I, unlike he was, am proactive in my care and treatment, so have hope.

It was 7 years before my 4th ICD replacement. I made it to the 5-8 year battery life span! Spring of 2017 I expected to get told that my ICD battery was dead but nope not yet. Cool - I guess maybe I could keep a job. This disease did not control me anymore. as it was not until December of 2017 I found out that my ICD battery was dying and needed replaced within 3 months. They did though get me in within a month. It was the first time I might only need the machine replaced. No need for the placement of new wires. However, I did have 3 leads in the one vein already and they did not have a visible picture since no x-ray was taken. Looking at the x-ray the cardiologists were worried that if the lead did not reattach to the machine they might need to take out the pre-existing leads. The preexisting leads are scarred into my vein though. The removal of them will not be quick and easy, so they were concerned an invasive surgery may be needed. Luckily the lead reattached fine and this time I avoided the invasive surgery which would have been a 6 week instead of a 2 week recovery. I ended up having surgery on January 16, 2018. I was put to sleep; in case the need for invasive surgery arose and due to the fact I 'felt' it the previous surgery. Surgery went very well.

However, due to way too much muscle scarring the ICD was not placed in the muscle this time. Therefore, I can see it more easily but with not being much of an athlete anymore the chance of damage is low. The surgery was to warrant a 2 week recovery. But 3 or 4 days after surgery the pain did not seem right. I saw my cardiologist 6 days after surgery and he added a week onto my recovery time. My machine and wires were healing fine but my incision was healing slowly. The cut was made on top of a scarred area. This was the 4th cut into the area so logically, scar tissue can not heal as quickly as skin. That appointment with my cardiologist led him to believe that my muscle would no longer regrow. That had always been a possibility - regrowth and another surgery. But since there had been no significant growth in the last 16 years the chance of that muscle thickening anymore is very unlikely. However, a concern that might arise with my heart is, he could not say when or how likely, is that my one ventricle might shut down. Nothing can be done to prevent it. If it happens it will happen and then we will deal with it.