The waiting is the hardest part….

My first appointment with the Pre-Heart Transplant Clinic was August 11, 2014, and at that time, the decision was made to go ahead with an assessment of my health to see if this was the appropriate time to do a transplant.  With the flurry of tests and such, the time frame was 4-6 weeks, it’s now been almost 8 but it looks like the decision may be coming soon.   I have one more appointment on October 8 that will investigate further something that was found in the test results, no one really anticipates that it is anything to worry about, they just want to be sure that all is well before proceeding.  It definitely makes me feel better to know that they are doing their due diligence when it comes to potential pot holes but waiting is hard yo.

 

It’s funny cause I say waiting is hard but it’s not like it’s something new for me.  For the last two and a half years I have been waiting for many things.  I have been waiting for another shock, I have been waiting for a diagnosis, I have been waiting for some new treatment that would make this all stop, so I’m not sure why waiting for this decision is harder than any of the other waiting I have been doing. I guess because it will have such a huge impact on my life either way.

 

I have a lot of anxiety around will they say yes, will they say no let’s wait.  Then I start thinking about having the surgery,  not having the surgery.  Then next it’s about my device, I’ve grown so used to it being there, will I be able to cope without it?  Will a new heart really give me the freedom back that I have lost?  Will it be more predictable?  Questions I don’t have the answers to that only a crystal ball could begin to shed light on.  It’s hard being anxious and afraid all the time, it really takes a lot of energy to constantly fight back at thoughts that have legitimate reasons for being there, big scary thoughts that are hard to argue with.  I actually had to start seeing someone to help me manage my anxiety, to help me be more aware of the bad thoughts I have that can tailspin me into a deep depression, to catch them before I get too far down and to deal with them. It’s hard being vigilant against your thoughts and it’s exhausting.  Lately I have had an increase in nightmares, they are almost a constant thing, dark, bloody, violent dreams that wake me up shaking, my heart racing and scared out of my wits.  Often, my husband will tell me that I was thrashing about in the night as if I was fighting some sort of battle while sleeping, I often wake up dog tired, all of this weighs on my mind so heavily.

 

Through all of this I have found that meditation,  relaxation and walks in nature have helped me cope quite a bit and as corny as it may sound, I try to take it one day at a time and not get too far ahead of myself.  I  can absolutely drive myself crazy if I let these thoughts and fears run my life because no matter what the decision is, I go back to waiting for the call that they have a donor. or waiting for the day my device has to save my life again.  Thankfully I have the loving support of a partner that listens to me, hugs me and assures me he is there for me.  Also I know that I just  have to trust that decisions are made in my best interest,  that everything happens for a reason and that everything will work out as it should.

 

And to live by my new motto…

It does not matter how many times you get knocked down, but how many times you get up. -Vince Lombardi

 

 

 

 

 

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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.

 

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.

Heart Transplant?

If it weren’t for my life threatening arrhythmia, I would be perfectly healthy.  OK, I could stand to loose some weight, but other than that I am reasonably fit and active and I eat good food.  Gone for the most part are my junk food days, I have slowly removed much of the bad stuff from my diet over the years, realizing that it wasn’t worth the headaches and jittery feeling that much of it left me with.  I still have a few vices, but slowly I am whittling them down.  Since my Sudden Cardiac Arrest, my heart just doesn’t seem to want to calm down, other than the 14 months of stability I enjoyed up to June 2, since that time, I have had 3 more events  One of them corrected itself just 2 seconds prior to shocking me and then two of them just recently within a week, so for those of you keeping track, it’s 32 events, 30 legitimate shocks from my device.

My Electrophysiologist referred me to the Pre-Heart Transplant Clinic because there is nothing more that can be done for me.  I have tried all the medications that can be tried, they have done all of the procedures that can be done and performed all the tests that can be performed,  eventual transplant is my only option.  To me, it’s overwhelming to think that it has come this far and it’s very frustrating on a personal level because I have done all I can to ensure that I stay shock free, despite being the perfect patient, nothing makes any difference.

Thankfully the wait for clinic wasn’t a long one, on August 11, I met first with a very nice nurse for an informative “teaching session” and to discuss my medical history.  She gave me a folder full of reading material and we discussed my heart and the impact my arrhythmia has had on my life, we talked about my physical health, my mental health and discussed what resources I have managed to access to help both and what possible resources she could refer me to going forward.  Much of the information that she had to share didn’t apply to me since my case is “outside the box”, you see, as a rule, people only get new hearts when theirs in in failure.  Many of the people she sees at the Clinic are people with advanced disease who can barely walk, have problems breathing and have lots of chest pain, these people have a low ejection fraction, mine is 65 and within the normal range.  For the first time, I realized what impact the shocks were having on my body and she told me that if they continued to happen, my heart too would eventually fail and my ejection fraction would start to fall.  Their goal, and rightly so, is that their patients hold on to their own hearts for as long as possible, this clinic helps people manage their illness and then the doctors step in when the window of opportunity starts to close and they give them a new heart.  Since my case is not part of the norm, I am really not sure when that opportunity will be for me, you see, they rely on a formula and they don’t have one for my situation, so in my case, the decision will be made when they have all of the information and test results and it gets presented to a committee of doctors whose sole purpose is to vet patients and their eligibility for a transplant, it takes about a month and I would have lots of hoops to jump through to move forward.

In order to officially go on the transplant list and along with all other tests they will perform, on their end, I will have to make arrangements to have a pap smear, a mammogram, a TB skin test and see a dentist for a check up to make sure that my teeth are in good form.  I will have scans on all of my arteries to make sure that there are no blockages, blood work to ensure all organs are functioning properly so that complications during the surgery can be avoided.  People who have a transplant go on drugs to suppress their immune system and they are susceptible to infection and certain types of cancer, there is a chance of stroke during or just after the surgery.  There will be 10 to 12 medications that I will need to take for the rest of my life including anti rejection drugs.  Organs are matched by body size and blood type, not by gender, race or age.  It’s all so interesting and overwhelming at the same time. 

We meet with the transplant doctor tomorrow at 9 am and we will have more information.  I have absolutely no idea which way this will go, all I know right now is that we could have a very important decision to make.  I know that I am in good hands and I trust that the right decision will be made by the doctors in charge of my care.

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.

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.

 

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.