What doesn’t kill you makes you stronger…

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.

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Looking for the magic bullet

I feel a bit down today.

 

The past two weeks have been stacked full of appointments, tests and procedures as part of my Heart Transplant Assessment, I have had something booked almost every day and I’m tired.  I still have a few more tests for next week so almost done and a meeting with the Heart Transplant Clinic again,  next up will be a number of vaccinations that quite frankly scare the shit out of me.  My heart can be so easily aggravated and I worry that introducing the vaccines into my body on a rapid basis will set me up for shocks…but I can’t go on the list until they are completed.  It’s a catch 22.

 

The scariest of the procedures was a Right Heart Catheterization where they put a scope into the right side of my heart through the jugular vein in my neck to determine how well the heart was pumping and to measure the pressure in the heart and lungs.  I was awake for the procedure so when my heart rhythm started to go wild, I could feel panic set in.  Prior to starting the procedure, the surgeon put a large magnet over my device so that it wouldn’t unnecessarily shock me and to help them control the situation to some degree.  It’s such an unsettling feeling to have your heart beat so erratically, I heard the Doctor tell the person operating the scope to watch my rhythm after he heard me say “Oh my Gawd”, they slowed down and my heart seemed to settle down.  The procedure took all of about 20 minutes and when it was through, I told the technician that it was one of the coolest but yet horrifying things I could remember having to go through.  Within an hour I was sent home with a long list of instructions in case the wound started to bleed again.

 

I also met with a surgeon, his job was to look at my case to see if I would be a good candidate for surgery.  One of the big discussions has been my weight, I am and always have been a big girl, very muscular but reasonably fit, despite that, he thought I would be.  It gave me some relief for him to say that but they have also expressed concern that it will take longer to find me a suitable donor heart.  One thing he mentioned during our meeting was that there was a 2% chance that whatever is causing my arrhythmia now could reoccur in the new heart.  I was stunned! I thought I was looking at the magic bullet that would make this all ok so I could get on with  my life and I realized then and there that there probably isn’t one and it was about as good as it was going to get.   He also asked me to think about how many shocks a year would be acceptable to me, he said that it may be a reality that I would be stable for awhile then experience a little “storm” like the one I just had with three shocks in two months.  Thinking about this lately, I realized that in the 26 months that I have had my ICD, I have had 31 of those shocks, that’s a little more than one a month…that is unacceptable.  The shocks are so random, with no warning how am I expected to put them into the back of my mind and carry on and live a normal life?  It’s more confusing now than ever, just when I thought having a new heart would lend some predictability to my situation, a little tidbit of information changes the entire game.

 

I guess that thankfully for me, I have an awesome team of doctors working to try to decide what is in my best interest and they have a whole community of international doctors they can go to for ideas in my very difficult case.  There are a couple of other ideas floating around, things they would like to try before giving me someone else’s heart and I am quite willing to try them, but in the end, it means more time in limbo and more time away from my productive life and I don’t like it one bit.  It makes me sad.

 

There is a difference between a Cardiac Arrest and a Heart Attack

Before I had a Sudden Cardiac Arrest I had no idea that it was or what it meant.  I found out the hard way and feel this need to educate people about it.  So many times the media interchanges these two terms when it comes to articles they write about people and heart events.  I also find family and friends at large don’t know the difference either.

 

For the difference between a cardiac arrest and heart attack, click here.  In my case, my heart is healthy with no abnormalities, no blocked arteries or structural defects.

 

Sometimes a Sudden Cardiac Arrest happens because of an Inherited Arrhythmia, to read about it, click here.  In my case, there is no known cause, there is a slim possibility it is inherited, but DNA testing would need to be done. I have no family history.

 

I have learned more about the heart in the last two years than I ever thought I would, at times when speaking about my heart health I have been asked if I am a nurse.  I have always been one to research and educate myself about things, especially when it comes to my health, I am in no way an expert but it helps me to know and to be able to speak intelligently about it.  My ignorance was such that I had no idea that anyone under the age of 75 could have a device that zapped them back to the land of the living only to find out that there are babies currently living with these devices because they have inherited an arrhythmia.  I tell you, whenever I feel sorry for myself for having to deal with this at my age, I think of the young ones out there who have just started their lives and how it will impact them.

 

My arrhythmia has been diagnosed as Idiopathic, so it has been difficult to treat.  Many of the drugs used to treat my condition haven’t worked in my case, to learn more about those drugs, click here.

 

I don’t have many options left and will be seeing a Heart Transplant doctor in near future to see if I am a candidate.  I have a long list of questions to ask.

 

 

 

 

 

 

 

 

 

Technical Difficulties

The two years since my Sudden Cardiac Arrest have been challenging to say the least.  You hear all the time about people coming back from death experiences with a whole new appreciation for life, for me that was not the case.  Initially, I mean before the shocks started, I went into a deep depression,our life had suddenly changed so much and I was convinced that I lived because I had a purpose, I was in a panic about figuring out what that was.  I spent my days, deep inside myself,shut off from the world trying to figure out what I had to do now that I had a second change.  Once the shocks started, my survival instincts kicked in along with Post Traumatic Stress Disorder, severe anxiety, a fear of going to sleep at night and a fear of leaving the house.  The leaving the house part was two fold, one, I worried that I would experience a shock, from which I always go unconscious and fall and crack my head open and two, I worried that a stranger, in trying to help would hurt me instead. The fear of going to sleep came from worry that the device, after saving me 28 previous times would fail and I would die, every morning I opened my eyes was a relief.  During the 10 months where my heart wouldn’t calm down, I experienced severe physiological damage my brain and body were battered, I had lost a great deal of muscle mass from spending so much time in bed, I was a shadow of my former self. For those 10 months, I had nothing to do but sit around waiting and worrying about the next shock between long stays in the hospital and a total disruption in our life.  It seemed that the meds they were using were making matters worse and just as I was about to go on the heart transplant list, a drug was found to control the arrhythmia, I have been stable now for almost 14 months. 

 

I really wasn’t able to start working on the physiological damage until last September, since my Cardiac Arrest at the beginning of 2012 Douglas and I had spent every single moment of every single day together while he took care of me, we had no time apart for a very long time. We were at a point where we needed to start separating our lives again, we needed to move on with our lives and get back some normalcy, it was time.  I had the chance to take part in a weekly Mindful Meditation group at Vancouver General Hospital and I was determined that this was my chance to gain some of my independence back.  I had so much anxiety around this, but I really had to push my way through it, it was an important step and just making the 40 minute trip there on public transit was daunting and I had to figure out a way that I could get to the class without crumbling from the anxiety. I decided to take a cab, it made both of us feel better.  Ok, so now I’m at VGH, anxious about being around of group of people I didn’t know, worried that I would have a shock and cause a scene, all I could do was cry my way through my introduction. I was a mess and I felt really stupid.  I sat through the rest of the day not saying a word, wishing I could bury myself in a hole.  I called a cab home and despite feeling like a failure, it was the first step and I was relieved.  The day before the next session, the facilitator of the group called me and asked me not to come back, she felt my depression was still too prevalent and that me being in the class would not be good for the others in the group.  I was crushed but not surprised.  One of the things that the facilitator suggested was that I get some one on one counselling and come back at a later date.  That one little baby step I had taken the week earlier lead to another, I found a counsellor I could see within walking distance of our apartment, I started making the weekly trek alone, still anxious but doing it, two steps forward, one step back.  I felt so happy that Douglas could have some time to himself and that I could work at being independent again, if only for a couple of hours a week.  Each week I got more and more confident and the counselling really helped me to process things and see things from other perspectives. I also learned to take things one day at a time and not to rush things and to stop being so hard on myself that I couldn’t just stand up and dust myself off and carry on. 

 

To this day I still experience anxiety, it’s depends on the circumstance now and not all the time.  I still have nighmares from time to time and the flashbacks have slowed down too, things are looking better, how far we have come.  One of the things that has made a huge difference in my mental well being has been mindful meditation.  When I first started it was hard, my mind would wander off a thousand times in a 5 minute session and I had a hard time sticking with it but I kept hearing how successful it could be so I carried on. There are many forms of meditation and I found at first that I had a hard time focusing on my breath so I tried guided meditation or I would put on some ambient music and say positive affirmations for 10 minutes, as long as it quiets the mind.  I find it easier to stay with it these days and I am seeing positive results.  I feel a subtle difference in how I look at the world, how I deal with depression, emotion, fear and anxiety.  I feel calmer, happier and much more positive than I have in a very long time. I’ve realized that I no longer need to mourn for the life that I lost but to live for the one I have been given a second chance at, I am more grateful. I’m coming to terms with my new normal.

 

I still have a way to go but slowly and surely I am changing.  It took death to make me realize how much I want to live the life I am meant to live.  Everyone, including me, deserves to be happy and to shine brightly, changing the negative self talk is probably the hardest to do as it’s so ingrained.  I’m still trying to find my way down this path, but I am more sure than ever that I am headed in the right direction.

My first ICD shock

It was May 3, 2012, it had been mere weeks since my release from the hospital. Douglas, my husband couldn’t sleep, he got up a couple of hours prior to me, early in the morning while I stayed in bed to sleep. At some point, he came in the bedroom to check on me and found me sitting up, confused and disoriented, I just didn’t feel right. He sat on the bed and talked as we wondered what had happened. I decided to get up and while I was putting on my clothes, the alarm on the device went off, it was a European ambulance sound coming from my chest. We just looked at each other frozen, wondering what to do next. I began to panic and started to cry, I was sure I was about to die (again). We gathered ourselves, Douglas calmed me down and we decided we should head to the hospital because we had no idea what the alarm meant. I had read so much information about the ICD (Implantable Cardioverter-defibrillator) in those first weeks that I was afraid that the lead to my heart had broken off or had somehow been pulled out of place.

Since I was feeling OK, we took a shower and called a cab to take us to Emergency at the same hospital I had been recently treated. As soon as I told the nurse what had happened, I was quickly moved on to the next step where my blood pressure and temperature were taken, shortly afterwards, I was whisked away to a bed in Emerg where a flurry of activity started to take place. I was immediately given a hospital gown and hooked up to the heart monitors, blood was taken, an IV line was started, a chest x-ray was done and while this was all going on, I was being questioned by the Emergency Doctor in charge. He assured us that someone from the Cardiology team would be around to speak with me, now it was just a waiting game. All kinds of interesting stuff was going on around us, the walls are only curtains so nothing is really private. The other patients were all ages, sizes, nationalities with every kind of problem you could imagine, at least it gave us something to keep our minds off what was going on with me, we just sat back and watched, it was like reality TV.

Eventually, a resident from the Cardiac unit came to take my history, between Douglas and I we gave them all the information they were asking, it was now getting to be late in the afternoon and we had been there all day with nothing to eat or drink. I was starting to get a major headache and my anxiety level was quite high. Finally, my Cardiologist came by, he brought the computer he needed to interrogate my device, it would show them what the alarm was for and what was going on, I think he was a surprised as we were when results showed that I had been legitimately shocked, that my heart had gone out of rhythm again to the point that device did what it was supposed to do and it shocked me to bring the rhythm back to normal, it had happened while I was sleeping, that explained a lot.

When I left the hospital on Feb 9, I left without one prescription, we had been walking quite a bit, my fitness level was poor at best when I got home but I was definitely starting to feel better. I had some colour back and was finally starting to look healthier again. We were outside every chance we could, spring was just arriving, the rain had pretty much stopped and it was sunny quite a bit. I was on the road to recovery and as far as we knew then and there, the cardiac arrest was behind us and were getting on with our lives, looking forward to our next road trip. Now the doctor was advising medication, Bisoprolol, a beta blocker commonly used with heart patients, a small dose, but it made me really nervous, I didn’t have such a great track record with previous prescription drugs. After discussion, he left Douglas and I alone to decide what we wanted to do, after debate, we decided that I should take the drug. Bisoprolol was started, 2.5 mg once a day, the IV was removed and I was sent on my way.

I never would have imagined that such a small dose of a drug could cause such side effects. I was dizzy to the point of nearly being unable to stand up without feeling like I was going to fall down and I was tired as hell. I complained to my family doctor when I saw her the next week, she advised me to cut the dose in half to see if the symptoms eased up, I was nervous about following her instructions but did, the symptoms did fall back a bit but my stability was short lived.

Stay tuned…

To hell and back…

It was January 23 of 2012, I have absolutely no memory of that day, my husband Douglas has had to fill in the blanks for me.  Apparently we had spent some time at our local Community Centre signing up for membership and working out at the gym.  I had complained on the walk home of feeling tired but  we drove to our local Future Shop to pick up a new wireless router, Douglas was in the process of setting it up while I was going to start dinner, it was just after 5 pm.  He heard the thud when I fell and when he got to me I was on the hardwood floor face down trying to breath and quickly turning blue, he quickly realized that something was seriously wrong and flipped me over to start CPR while he called 911 for help.  I was in a pool of blood, I had broken my nose in the fall and had a small cut over my right eye from my glasses, turns out, I also was concussed.  We live relatively close to BC Ambulance Service and he heard their sirens almost immediately as the 911 operator stayed on the line with him, when they arrived there were many of them, big strapping firemen and paramedics, they took over quickly moving furniture and attending to me on the floor.  They had to zap me a couple of times to stabilize and from there I was rushed via ambulance to Vancouver General Hospital.  Statistics say I had less than a 5% chance of surviving through admitting but I did and I spent the next 9 days in a medically induced coma bouncing between ICU and CCU.  To complicate matters even further I also suffered broken ribs during CPR, I ended up with a punctured left lung which became infected and was antibiotic resistant, thankfully they found something that would work, there were several times in the first days that my doctors told him things looked grim and they weren’t sure I would make it but I managed to hang in there, taking one step forward, two steps back, eventually I would start to hold my own.

In those first hours Douglas called our closest friends here in Vancouver, Mir, Eli and Loren they were there right away, my mother and father-in-law, Karen and Tony had to come from Vancouver Island, they were over quickly and eventually my Mother and Step-father, Bev and Kent arrived from Kelowna then my youngest sister Jade from Ontario flew in, I had my cheering section.  Immediately Douglas started posting status updates to my Facebook page to let friends and family from around the world know what was going on…soon we had a whole network of people showing support, these updates would help to keep my sisters Wendy and Kellie, also in Ontario in the loop.  Prayer groups were organized, positive energy was being sent our way and to this day I am sure it all made a difference to my recovery even though I had no idea it was happening.  It would be a couple of months before I could go back and read those entries to my facebook page, the support was overwhelming.

During those days first days in the hospital, they did a multitude of tests to try to figure out what the cause of the Cardiac Arrest was, there were no blocked arteries, MRI normal, Echo normal, no family history, it was labelled unexplained.  I have always been healthy and active and even though I have carried around some extra weight most of my life, my heart was strong, or so I thought.  There was no reason on earth for anyone to expect this type of thing would happen to me, family on both sides had lived well into old age and I expected to do the same.

Music has always been a common interest for Douglas and I, when we talked about things once I was home, he related stories of how he would come to see me and play my favourite music for me with my headphones on while I was comatose, he would talk to me as if I were awake, telling me all about things in which we had a common interest that were going on in the world.  He also did a lot of crying, it was more than upsetting for him to see me so helpless, tethered to so many machines, so many bags of fluid feeding drugs and hydration through my veins to keep me alive, he is grateful I have no memory of all of that, quite frankly, so am I.  He did take pictures and video of me, which at times are hard for me to look at, but I am happy he did, it helps to fill in the blanks from those days and it feeds my curious nature.  To this day, I still have the odd question for him regarding things that happened during that time.

My first memories come back sometime the beginning of February, I have brief flashes of things that went on.  The drugs were so strong that common questions from the nurses when they came into  my room was “do you know where you are?” “do you know why you are here” at first I wasn’t sure, but I came to realize the seriousness of what had happened.  I definitely remember being in a lot of pain from the broken ribs and the incision site where tubes had kept my infected lungs draining.  My memories of that time are snapshots of things that I can’t seem to string together even today but as days passed, I became more aware and less foggy.

One day a couple of ladies came to see me, they were talking about implanting a device in my chest I am not sure I really comprehended what they were talking about but we made the decision to let that happen.  On February 7, my Cardiologist implanted an ICD (Implantable Cardioverter-defibrillator) into the left side of my chest just below my collar bone, it was done to protect me should my heart go out of rhythm again, the device would monitor my heart and it would shock me internally if it was needed.  Within a couple of days, I was ready to come home, that was February 9, 2012.

Being home was the best, I had missed it so much,especially our kitten Ripley.  The nurses told Douglas that I had lost about 20% muscle mass for every 3 days I was in that hospital bed, when I got home I was so weak I could barely walk to the bathroom in our small apartment by myself.  Eventually, Douglas got me out for several short walks each day to build up my strength and after a few weeks I could walk the two blocks to the grocery store but I would have to sit outside and wait for him to shop so I would have enough gas to get back home. At this point, the scales showed I had dropped 30 pounds, I felt old, fragile and like I was fading away.  He cooked healthy organic meals for me, helped me shower, kept the house clean, did the laundry, basically he waited on me hand and foot, he always made sure I was comfortable. For the first month or so I was unable to lie flat in bed to sleep so the only thing I could do was to sleep sitting up on the couch in the living room, Douglas would come out several times a night to check on me, he hated leaving me there alone but he needed proper sleep in order to take care of me. Eventually I was able to get around much better, walks became longer and with the help of a gel mattress top I was able to move back into our bed, my strength was coming back and things were looking better.

Little did we know things would soon change and not for the better.

Stay tuned…more to come.

Footnote:  the doctors did eventually find what they think was the cause, a prescription drug had caused my heart to go into what is called a Long QT rhythm.

If you suspect someone is going into Cardiac Arrest, start CPR and call 911 immediately you could save their life.  Had I gone without CPR being performed as quickly as it was, I would not be here to tell my story or I would have suffered severe brain damage from lack of oxygen.  There were many things in my favour that day.