Mental Health: More needs to be done

This is my first blog in a very, very long time. I have been busy surviving, living life and trying to make sense of the world these days.

What moves me to write today, is a recent experience I have had in the realm of Mental Health and getting the help I need.

For those of you not familiar with my story, I survived an unexplained Sudden Cardiac Arrest in January of 2012 that resulted in the implanting of an internal defibrillator. The next 3 years was a horror story of problems, medication changes, heart stops and ultimately shocks from my device. Over 120 times. I have been “stable” now for just over 2 years but my mental health issues hang on tightly, I just can’t seem to get past the trauma. For the past 5 years, I have struggled with Severe Anxiety, Post Traumatic Stress Disorder and Depression. While I have some of the best arrhythmia experts in their field responsible for the care of my heart, finding the help I need within our Canadian Health Care System to deal with the mental fallout has been a disaster.

There was very little in respect to mental health resources available to me in the big city of Vancouver, one on one therapy to get the real help I needed was available for upwards of $150.00 an hour, impossible on a fixed income. I could find cheaper therapy, but it entailed students working towards their degree and they were available to me for a few weeks or a few months at best, then I had to start all over with a new person. I was able to take advantage of some art therapy, which I found very helpful, but that was very short term as well. It’s been very frustrating especially with all the awareness being raised around mental health issues these days.

My husband and I recently relocated to Nanaimo on Vancouver Island, we were desperately in need of more affordable living, some peace and quiet and although it meant leaving the safety net of doctors and hospitals who intimately familiar with my history, we really didn’t have much choice, we had to go somewhere else.

So, enter a new Psychiatrist. In order to take advantage of the mental health resources available in our new city, I had to be referred into the system here in Nanaimo. The wait time to see the doctor was 2 months, to date, I have only been referred to a Cognative Behavioural Therapy Group it’s only been 2 weeks so I can’t attest to it’s effectiveness. Last week, I had a followup visit with the Psychiatrist after 4 months in the system, our conversation is the reason I have felt compelled to write this blog….

I should also mention that an anti-depressant named Cipralex was one of the culprits assumed in the cause of my Unexplained Cardiac Arrest, the drug, as some anti-depressants do, lengthened my QT Interval and my current heart drug Quinidine is not very compatible with other drugs.  I am ABSOLUTELY TERRIFIED of taking any additional drugs, so, imagine my surprise when I was presented with a prescription for Lamotrigine along with a study assuring me that this drug did not prolong QTc. As I sat there horrified at the thought of having a drug I did not want or ask for pushed on me, the doctor talked glowingly about all the good things it could do for my anxiety.  “It has been known to erase all PTSD symptoms” he said. This drug is used to treat epilepsy and when it was discovered that it made people taking it “happy” they decided to try it on patients with Bipolar disorder.  The drug comes with a Black Box Warning about life threatening skin reactions such as Stevens-Johnson Disorder and other horrifying things. Sign me UP!

I find it totally irresponsible for a doctor to give a patient who has been through as much as I have and has been told of the consequences I face by taking a drug that is not compatible with my heart medication to hand over a prescription and expect me to willingly have it filled.  He seemed quite surprised when I told him NO!  He told me he thought my only criteria for taking something was that it did not affect my QT interval.  WRONG!  He seemed quite proud of himself for finding the “special” drug just for me!  WOW!  So much for my hope of finally getting some of the help I so badly need.

This experience has been my call to action, I think that the mental health system has it all wrong.  I know there are people out there who require medication, I used to follow along until I died that day on my dining room floor, but I will no longer be are part of this “drugged” society.  I think they should offer more yoga, meditation, mindfulness, music and art therapy classes and encourage people to spend more time out in nature while they get their free “one on one” help to fill in the gaps and less medication. Kids should be taught these coping skills as soon as they start kindergarten, it will help them be more resilient as they grow up and allow them to have some tools as adults, just in case a curve-ball is thrown their way. It would take a huge burden off of the health care system.

It was a light-bulb moment.  I have to stop relying on a system that has failed me and take matters into my own hands.  I will have to search out the support I need myself, if I wait around for it to help me, I will never get better.

wish me luck.

 

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.

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.

 

Testing 1, 2, 3…

Last Wednesday I spent most of the day at the Pre-Heart Transplant Clinic talking to doctors, dieticians, nurses and social workers about the possibility of a heart transplant.  If you haven’t been following along, I have something called Idiopathic V-fib a rare arrhythmia that has puzzled the medical profession.  I have been to all kinds of specialists, my case has been shared with Electrophysiologists from around the world and no one has been able to come up with a treatment to stop my heart from going out of rhythm.  I have tried all the drugs that I can try, all procedures have been done that can be done yet they can’t seem to give me my life back. The events are so random in when they occur and why they occur that we rarely leave the safety of Vancouver, we feel safer staying close to the hospitals and doctors that intimately know my condition.  Thankfully, the events most often happen at home, but we just recently had my first “Public” event while on BC Ferries coming home from a visit with my in-laws, 20 minutes out from Vancouver.  It was scary as they always are.  I do have a device called an ICD implanted in my chest that jolts me with 35 joules when necessary, but I am most always unconscious when this happens.  The last two and a half years have been a roller coaster, with many ups and downs in regard to my condition.  I did have a brief period of time when I was stable, but that came to a crashing halt after 14 months and was followed by three events within a 2 month period.  This is why I am being considered for a transplant, I am told that they look at maybe one case per year where the issues are similar to mine.

 

They say that having a transplant is like trading one disease for another, but in my case, at least the transplant will have more predictability and from my perspective, it will give me back some semblance of my former life.  Currently, I can’t drive, work, travel or plan anything long term and I still have lots of living to do, lots of places I want to see and people I want to meet.  This terrible turn in my health has devastated us financially, before all this, we had well paying productive jobs, now we are both living on what little I get as far as long term disability from my former employer.  I can’t be left alone so Douglas has had to leave the workforce in order to be with me.  We live each day wondering if the rug will be pulled out from underneath of us because of a decision made by someone at the insurance company, it would be devastating and we would be homeless, not something you want to face when you are fighting for your life. Some days the stress is unbearable, we do the best we can to cope.

 

During this meeting on Wednesday, it was decided that we would go forward with the transplant assessment, they take a microscopic look at my health at this moment to make sure there are no surprises.  They look at all aspects and no stone is left unturned, they want to be sure I am free from cancer and infection and that I am going into this surgery with the best chance of long term survival.  Before I will even be considered for transplant I have to have a number of vaccinations, a dental check up, a pap test, a mammogram, samples are taken of my urine and stool, I will have doppler scans on my neck and legs to be sure there are no blockages, an ultrasound on my abdomen, a lung function test, a CT Scan of my body to look at my internal organs, a chest x-ray,  a bone density test and a right heart catheterization which looks at the blood pressure in the lungs.  I also have to meet with a Social Worker, a Psychologist, a Dietician and the Surgeon, the evaluation is all encompassing.  After all of this information has been gathered, my case goes before a team of doctors who decide if I am a suitable candidate for transplant and if this is the right time to do the surgery.  The whole process takes 4 to 6 weeks, if the answer is yes, then I am given a pager and the wait begins, it could take anywhere from a day to over a year to find a suitable donor, the average wait time is 6 months.  If the answer is no,  I will continue to be monitored for any changes to my condition and the possibility exists that somewhere down the road I will be considered again.  For me, a no would be devastating, we have already put our lives on hold for over two years waiting for a day when we could resume our exploration of the world.  I want to be able to go to Ontario to visit my family, it’s been over 10 years since I have seen many of my relatives and there are so may new little ones I have never met.  My parents are getting older and my Dad is not doing well, and I really need to see old friends who support me from afar.  I want to go to Portland for a weekend, a city I love dearly, there are so many places that I want to return to, places that have touched my soul and make me feel a part of this earth.  There are so many places left to explore with the person that I love the most.

 

I really hope they say yes, I really, really miss my life and all it used to be.

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.

 

 

 

 

 

 

 

 

 

I’m getting bettah…

I am not sure I will ever get used to the fact that I need to have a piece of metal in my chest to help keep me safe and alive.  It’s is still very bizarre to me.

 

It’s been over 2 years since the ICD was implanted into my chest, at times it amazes me with the whole “wonder of modern medicine” thing and at times it depresses the living hell out of me, my life changed forever with the events of January 23, 2012, and I don’t like it one bit.  Mind you, the journey I have been on since that date has been one with lots of terrible lows and not so many highs.  I have dealt with so much.  The physical recovery from the event took a very long time but recovery from the mental aspect has taken much longer and I still very actively deal with it to this day.  I have had to mourn the loss of the life I had before this along with depression and anxiety and PTSD.  I have had to drive myself nuts trying to figure out my life purpose, after all, I came back from the dead, there MUST be a reason.  Then of course, all the woulda, shoulda, couldas, could I have prevented this from happening if I had only made some changes along the way.  There were also really dark times, the times when I wanted to just die and get it all over with, not that I really wanted to leave this earth but I figured it was a lot less painful than what I was having to go through.  I obsessed over dying, I was so afraid that I would be forgotten, that my family and friends would just pick up and carry on without me.  Then I would remember all the times that I thought of loved ones who have left  and I would realize that they go on because I think of them and the interactions I have had with them in my life.  It was with this realization that I decided that I needed to change the kind of person I felt I was, I wanted people to have warm and fuzzy thoughts about me.  I wanted them to know how I felt about them, how much they meant to me in my life, I wanted them to know that I had a happy life and that the love and support they gave me made a difference.  For someone who could hold a grudge for a very long time, this was a whole new way of life for me.  I decided to forgive myself and others for wrongs both real and imagined, and I decided to love myself and to stop the cycle of negative thoughts that reside in my head.  I started being grateful every day for the good things in my life instead of focusing on the bad, I took up meditation and walks in nature and slowly but surely I felt a shift.  I started reading about energy and raising my vibration and healing gemstones and I started accupuncture treatments and I joined a group where we discuss spirituality in a non religious way.  Today, I am a different person, I feel like all of the hard spots that have built up over the years have softened, all I need to do is keep working.

 

I still have challenges, it’s a constant dance of two steps forward, one step back but the steps back aren’t quite as far as they used to be.   I have family and friends and a group of medical professionals who are helping get life back on track  There are times when I get frustrated because I don’t think I am making the progress I should but then I have a day when I realize how very far I have come.  The heart issues are very much interconnected with my mental health, they feed off each other in a circular motion, but I have come to realize that as corny as it sounds, one day at a time.

 

A  friend once described me as cloudy with sunny breaks, today Douglas and I had a conversation about this and he thinks that a more apt description of me these days is sunny with cloudy breaks…now that’s progress and I will take it.

 

“IT” strikes again….

After 14 months of stability, my heart went into V-Fib and I passed out cold on the floor in our kitchen on June 3.  It’s always so confusing coming out of unconsciousness and coming to the realization of what has happened.  The first word out of mouth this particular day was FUCK!  It happened so fast and so randomly. 

 

I was cooking breakfast, it was a Tuesday morning and I felt to the bone tired when I rolled out of bed at 9 a.m.  I kept complaining to my husband that I wanted to go back to bed and get more sleep but I had a pottery class  that I really wanted to attend so I got going with my day.  I was up and down several times to check on the food on the stove and was at the point where I was ready to start putting it in the bowl.  I grabbed the oatmeal, separated it into two bowls then I turned around to grab the cinnamon apples from the stove when I felt my heart turn into a jiggly mass of jelly.  I let Douglas know I was in distress and at this point, I knew I didn’t have enough time to make it somewhere safe to sit down, so I did what my husband and I have always talked about, I started to get down on the floor.  About halfway down, everything faded to black, the next thing I knew, Douglas was standing over me calling my name, I was perched precariously against the cupboards and confused as hell.  We weren’t sure if I was shocked or not, it felt like I had been, my upper left chest and armpit felt like the muscles had been zapped and it took Douglas a couple of seconds to get into the kitchen so he thought he had missed it, he called 911.

 

I stayed on the floor in the kitchen because it was easier, I didn’t have the confidence to stand up and I could feel my heart was still in a whacky rhythm, it was just safer to stay put while Douglas talked to the 911 operator while he waited for the ambulance to arrive at the door.  It’s always tight in our small little apartment when we have to call the paramedics, generally, firefighters are the first to arrive, then general paramedics but since this is my heart, they also send a specially trained cardiac team to take over should there be a need. Then there is all the gear and the stretcher, if it weren’t so serious, it would almost be comical, everyone carefully trying to work around each other, our cat, now awake and curious out sniffing at everyone’s heels and getting in the way.  While the paramedics are taking my vitals, Douglas is stealthily working his way around the apartment trying to pack a bag of the things he anticipates we will need, he has done this so often, he just scratches items off the list in his head.  Finally we are ready to go to the ER. 

It’s always a long, long day, the same questions are asked over and over while we wait for someone from Cardiology to arrive.  I always have an IV started and I can’t eat or drink anything other than water so we sit and wait, and wait.  Finally, sometime mid afternoon I see the Cardiology Resident and he tells me someone will be down with the computer that will read my device so we can see what has happened.  A couple of hours go by, the technician arrives, reads the device only to tell me she has to go and get paper so she can print off the event.  More time passes, we both just want to go home, why is this taking so long?  It’s now dinner time and the headache that was mild a few hours ago is now screaming, my stomach is growling, both of us are getting cranky and I just want to go home.  The technician comes back, prints the event and tells me that there was no shock.  We are so confused…it’s never happened like this before, why didn’t the device shock me? The information I get is vague at best, they tell me I can go home and that an appointment will be scheduled with my regular Electrophysiologist in the coming weeks. All I can think about is getting something to eat.

 

I would get my answers a week after the event when I see my doctor.  It was one extra beat that started it and sixteen seconds, that was all it took, 16 seconds to turn my heart into jello and take me off my feet.  My device was all charged up and ready to go, it would have given me 2 more seconds before hitting my heart with an electrical burst, but for some strange reason, my rhythm corrected on it’s own this time, something it has never done.  Some very small consolation, but because of this event, I have lost much of the mental health progress I had made, my confidence is low.  When I travel anywhere on transit alone, I look around and wonder which one of the strangers riding the bus with me will help me should I need it. I can’t drive for 6 months.  Any hope that I had that our life was getting back to normal is gone and there are so many things we still want to do.  Quality of life is nearly non-existant, we wait for the next event unable to take control over this situation. 

 

There is no rhyme or reason to what is happening to me, there are no answers still.

 

 

 

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.