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.

Happy to be here

hello everyone…

I have been dealing with a life threatening health issue for the past year and a bit, it’s been so much to process and I finally came to the conclusion that I would like to use this forum to talk about what happened to me and to raise awareness about Sudden Cardiac Arrest.

More and more these days we see headlines in the news about people, especially young people having Sudden Cardiac Arrests…some are lucky to have quick intervention to save their lives, others not so much. You now see a flurry of activity in Community Centres and other public places across Canada to install AED (Automated External Defibrillators) in order to help save lives. You also see ads bringing awareness to this issue on public transit and other places telling you how to recognize the symptoms of a Sudden Cardiac Arrest and what to do to help, we’ve come a long way baby!

In my case, I have no underlying health issues that would have caused what happened to me so the specialists in charge of my care are on the search to figure it out. Because it is rare and problematic to this date, my case was presented to a group of Cardiologists with a specialty in arrhythmia at a conference held here in Vancouver about 6 months ago and although I am happy it had the attention of many of the best doctors in that field from across the country, I still wish it weren’t happening to me. I am a curious person by nature so thankfully I have found this all to be very interesting, I know more about hearts, heart disease, procedures, hospitalizations than I ever cared to, in fact, during a procedure just the other day I was asked if I was a nurse because I was able to talk so intelligently about my history, I just laughed and said no, unfortunately I have learned it from my experience. Every procedure that has been done, every medical term that is used I research, I know all the jargon and medical phrases, I just have this thirst to know what is going on, I want to be educated, I want to be involved in my care and make informed decisions about any aspect. Sadly I have seen first hand how many people out there these days are ignorant to their health issues, they have no idea what is going on with their bodies, I absolutely could not be that way.

I am happily married woman living in Vancouver, BC. I’m certainly not old enough to have the heart problems I have been coping with but I’m no spring chicken either. I am lucky enough to have a very dedicated husband who has been caring for me, he keeps me grounded and never lets any pity party I conjure up for myself go on for too long. This has turned our world upside down to say the least. Prior to my Cardiac Arrest I had a very high stress job, made decent money and whenever possible you would find us on a “road trip” at every opportunity. We love the desert, volcanoes, hot springs and have traveled quite extensively throughout Western Canada, US and Mexico leaving us with many, many fond memories and the urge to revisit the places we love so much. We both really miss that part of our life right now and we hope one day soon we can get back to having the wind in our hair on the open road. In our minds, flying is for sissy girls, we prefer to see things on the ground, they are much more interesting.

I am very grateful too that I also have a supportive family and a network of great friends who have been there for me every step of the way, we have certainly needed to lean on them more than once. I am not sure what I would do without any of these people in my life, the outpouring of support this past year has been overwhelming, without all the prayers, love and good vibes, I’m not sure I would have survived.

Something like this really helped put things into perspective and I have learned what is really most important in my life, I will share my thoughts and experiences here. My hope that is I can help others along the way.

Stay tuned and thank you for reading.