and then out of the blue….

Sunday, July 27 I woke up feeling pretty good, I was almost 2 months away from my latest heart event and I was finally, for the most part, free from the pain I had been experiencing  since I tweaked my lower back earlier in the week. I made breakfast, showered and then we headed out.  It was an absolutely beautiful day and I was definitely grateful to be on the move.

It had been really hot and uncharacteristically humid in Vancouver in the days leading up to Sunday, July 27 and I had been doing a really great job of avoiding being outside when it was at it’s hottest so, after our errands, we headed home to our apartment to stay out of the heat.  We had a bite of lunch and then settled in to read while we were listening to music.  We live close to the ocean and there was a nice cool breeze blowing through the apartment, I was enjoying the moment and thinking about all the things that I have to be grateful for, then they started.

It was 2 pm, the alarm I had set on my phone to tell me it was time to take my medication started to chime, immediately I started having some really hard palpitations.  I stayed put, hoping it would pass, it didn’t, the just got more intense.  Suddenly, I felt my heart start to race, I began to feel faint, my heart felt like jiggling jello in my chest, it was pumping so fast, eventually, with no blood in the chambers to pump, I started to fade to black, there is always so little warning.

When I came back to consciousness, Douglas was standing over me with the phone in his hand, it always takes me some time to come to the realization of what has happened, I was devastated.  I had also bit down really hard on my tongue during the shock, it was really sore and I could taste blood.  The paramedics arrived pretty fast, I was still having all kinds of palpitations to the point that there were a few times I thought I was going to shut down again but I didn’t.  By the time we got down to the lobby of our building the special cardiac unit had arrived and they took me to the hospital, my heart was still in a crazy rhythm, I could feel it and my anxiety was high each time it jumped.  The ER was busy, there were all kinds of stretchers littering the hallway, but because of the nature of my problem, a bed was found quickly, in no time I was having blood drawn, being whisked away for a chest xray, blood pressure, urine sample, temperature and hooked up to the heart monitor so the paramedics could leave.  It all happens so quickly, then we sit and wait.  This time was actually one of our shorter stays, within a couple of hours an Electrophysiologist showed up with a terminal to read my device so they could see what had happened.  He was surprised when I told him this was the 30th time I had been shocked in just over 2 years.  It even surprises me that I have been able to endure what I have been through, but it has become my life.  Our life, it affects Douglas as much as it does me, he has had to see someone he loves die over and over again only to be brought back to life by a metal device that shocks her heart.  If I weren’t living it, it would be really hard to comprehend.

After all was said and done, I was discharged early evening.  All blood results were perfect as were all other test results, my heart had settled down and I mustered up the courage to leave the safe haven of the hospital to walk home with my beloved and cook some dinner.  All I can do is sit and wait for the next time, and every day that goes by without an event is a good one.  Do I feel down?  Of course I do, it’s really hard getting over this time and time again.  Am I going to let it keep me down?  No, I have to be brave and carry on with my life despite the anxiety and fear that I live with each and every minute of each and every day.  I would love nothing more than to have a solution to this that will give me back my life and my mental health, but I am not sure when that will happen…until then I can only do the best I can to deal with the situation I am in.  It’s tough.

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The Casper Study

What is the CASPER Study?

 

CASPER (Cardiac Arrest Survivors with Preserved Ejection Fraction Registry) is a national study in Canada that aims to detect rare genetic conditions in children and adults with an unexplained cardiac arrest, as well as their family members. Such conditions, which can go undetected, can lead to cardiac arrest and sudden death. Anyone over the age of 12 may participate if they have survived an unexplained cardiac arrest due to ventricular arrhythmia and their first degree family.

 

Dr Andrew Krahn is the Project Lead for the CASPER Registry which is funded by Boston Scientific Canada, Medtronic Canada and the Heart and Stroke Foundation of Canada. In October of 2012 he was appointed the new Head of the Division of Cardiology in the UBC Faculty of Medicine, as well as Head of the Vancouver General Hospital Pacemaker Clinic. Dr Krahn was recruited from the University of Western Ontario and is an internationally recognized expert in the management of cardiac arrhythmia, the genetic causes of arrhythmia, causes of loss of consciousness and implantable heart rhythm devices. He has published 245 papers in peer-reviewed journals, and is the president of the Canadian Heart Rhythm Society. He sees patients in the Inherited Arrhythmia Clinic at St Paul’s Hospital here in Vancouver and I was referred to him last year as mine was a difficult case.

 

I had an unexplained cardiac arrest in January of 2012 that resulted in the implanting of an ICD, the first few months of recovery were normal then one morning I experienced a shock in my sleep. I woke up groggy and confused and it wasn’t until the device alarm sounded that I had any idea what was wrong. Over the course of the next 10 months, I would have a total of 28 shocks, some came alone, some came in storms but every one of them happened in the morning and while I was at rest. During my many hospital admissions I would be prescribed most of the common arrhythmia drugs, many would not work at all and some would work for a short period of time, life was difficult. My official diagnosis is Idiopathic Ventricular Fibrillation and I continue to have issues to this day.

 

I am by nature a very curious person so when I was asked if I wanted to participate in the study my decision was quick and easy. Not only might it answer some of the questions around my case but it’s a way that I can give back with the hope that something positive will come from all I have been through. Sure, I have privacy concerns but my desire to make a difference outweighs any of that. In fact, I also decided to sign the optional consent form for the DNA BioBanking study, where a small sample of my blood is stored as DNA and RNA (ribonucleic acid) for future use in other research studies, I was honoured to be the first donor to the British Columbia BioBank last February.

 

Where the goal of the main CASPER study is to collect healthcare information from individuals to better help inform cardiologists and other healthcare professionals on how to diagnose and treat individuals with the cardiac arrest the BioBank study helps to identify variations in genes that may cause cardiac arrest. The fact that some people experience unexplained cardiac arrest may also be caused by slight variations in the structure of the genes and many of the genes that may cause cardiac arrest have not yet been identified. My hope is that by allowing researchers to study my blood, there can be a better understanding around my case and wouldn’t be cool if they identified something they’ve never found before? I think so.

 

The goal is to enroll 800 participants in the CASPER registry nationwide, currently there are 600.

Just can’t wait to be on the road again….

I LOVE to drive. 

 

I got my license to drive a car the moment I turned 16, I felt a great sense of freedom having that little piece of paper in my hand and quickly bought my own car, a used Ford from an old guy in my small town who rarely took it out, it was in great shape and had very little in the way of mileage, it wasn’t the coolest car but it served it’s purpose and it was mine to go where I pleased and go I did.

 

I have owned a vehicle most of my adult life, with a few exceptions here and there, and in the last 10 or so years ‘Road Trips’ have become a way for my husband and I to satisfy our wanderlust.  Neither of us have found much practicality in flying to a destination and going from there, we couldn’t stand that we were missing so much good stuff on the ground.  We have been explorers, and have spent much time visiting many places with geological significance.  Our first big road trip was in 2003, we drove to Reno, then Las Vegas, then San Diego, Los Angeles, San Fransisco then home.  We have lots of photos and such warm memories from that trip. We even got married in Vegas, by an Elvis impersonator and it was one of the coolest things either one of us has done.  We spent our “honeymoon” at Universal Studios where we saw the movie American Wedding, it had just been released.  I actually adopted the nickname “The Machine” on that trip because of my stamina behind the wheel, we drove long hours each day in our quest to see all we could see on that trip, it was amazing!

 

There would be many other “Road Trips”, ones where we spent our time in Death Valley, or at Old Benton Hot Springs, the Scablands in Washington State, Crater Lake in Oregon, Mount St Helen, the Hoover Dam, Portland, Mono Lake, and even a trip where we drove to Cabo San Lucas in Mexico…now THAT was something!  It was another very, very cool experience, one I will never forget as long as I live.  Lots and lots of fun memories from the road.  I miss it so much!

 

The reason I miss it is that my heart issues have stopped us in our tracks as far as these trips are concerned.  Every time I have an incident, I am not allowed to drive for 6 months.  Every episode sets the clock back to day one and there have been so many incidents that we finally sold our Jeep Liberty because the cost of keeping a vehicle insured was just pointless. It’s all about public transit these days.  Granted, I did finally have a spell of good health and we signed up for Zipcar, it was nice to have access to a vehicle  when it was really needed.  Even if it was just a trip to Costco, I felt that sense of freedom again, just like I was 16 again.  But that was to be short lived because on June 3 I had an event that took my driving privileges away again until early December just when we were hoping to get back on the road.  We had talked about driving to Ontario to see my family, it’s been 10 years since I had been back, it was a huge disappointment to both of us, we were looking so forward to the wind in our hair again.

 

It’s funny, lately I have found myself watching people drive by as I wait at the bus stop, and I actually feel envious, it’s kind of like when a person quits smoking and every time they see someone light up, they want to do the same, it just looks so enjoyable you almost can’t resist.  I want so badly to be on the road again and right now, we have so many road trip plans in our back pocket that it would take us an eternity to get the all in.  I dream that one day we can pull one out, hop in a vehicle and hit the open road and get our wanderlust on again. I want to again  explore this magnificent planet of ours and can’t wait to re-visit some of our favourite places on this earth and I am almost positive, that we will find some new ones.