What doesn’t kill you makes you stronger…

The shocks started at 6:50 am.

 

I wanted to text my husband at his hotel to let him know I had a good night and that I was awake.  I sat up in bed and noticed out of the corner of my eye that the red light on the monitor was going off, upon looking closer, my heart rate was over 120 beats, I was surprised but sat on the edge of the bed until it came down to around 60.  I needed to get my cell phone out of my bedside closet which required walking around my bed and digging through my bag, I no sooner reached the closet and opened the door and I realized that I was in trouble…I felt my heart jumping like jello in my chest and needed to get myself safe or I would end up on the floor and possibly injured.  I jumped over the rail of the bed and just as I hit the mattress, I got the first jolt from my ICD, I was awake and it hurt like hell.  I liken it to someone holding a large elastic band, one end on my chest as they pull it out as far as it will go, then they release it, it’s like a really hard snapping feeling.  This was the first of many.

 

I had been admitted to the hospital on December 16th and my arrhythmia medication had been stopped.  My procedure, a VF (ventricular fibrillation) ablation was to take place on December 18 and the doctor wanted to be sure that the meds were out of my system so that they could have a better chance of seeing the bad pathways in my heart that allowed my heart’s rhythm to go out of whack.  It’s very common for them to do this prior to the procedure and we were all shocked that my heart reacted the way it did so quickly.  Within the first hour, I experienced more than 20 shocks and the nursing staff on the cardiac ward quickly realized that I needed to be moved to CCU, I wasn’t their typical patient any longer and I could hear many of them talking about how traumatized they were after watching this happen to me.  Every time my heart rate went into the danger zone lights would flash and alarms would sound and everyone would come running.  I have a device that is meant to deal with my arrhythmia but there was the slightest of chance that they may need to intervene with a crash cart if the device was unable to get me back into sinus rhythm.  I heard the nurse call my husband, I could only imagine how worried and panicked he would be, the nurse told him she would escort him to CCU once he arrived.

 

Once all the arrangements were made, I was transferred to the Cardiac Care Unit, the nurse/patient ratio was smaller there and they are used to dealing with the things that were going on with me. The shocks kept coming in waves, I was no longer awake for any of them as I had been for quite a few from the first hour, each time my heart would beat so fast that there was no longer blood going from one ventricle to another, I would fade into unconsciousness, the device would shock me and I would awaken, this went on for most of the morning.  It got so bad at one point that they had to shut off all the lights in my room, close the curtains, there could be no noise and the nurse just stationed herself at my bedside, my heart was so aggravated that the slightest thing would set me off.  Prior to leaving the Cardiac ward, I had been catheterized and thankfully they had the foresight to do that, now I was being heavily sedated.  I was at the point of exhaustion and apparently both the nurse and my husband were pleading with the doctor to do something to stop the madness but the doctor was hesitant to put me back on my meds because they were trying to clear a spot in the Cath Lab for me that day to do the procedure and he didn’t want to stifle the arrhythmia to the point that they were unsuccessful.  When it became apparent that they would have to wait until the next day,they put me back on a low dose of my heart medication, at this point things slowed down but I continued to have frequent shocks.  My husband said he stopped counting at 70 that day.  I was grateful to be so heavily sedated.

 

I don’t remember much from there, I faded in and out, at one point, my husband was by my side holding my hand playing some soft ambient music to sooth me.  I am sure it helped him as much as it did me, he has seen me go through this so much over the course of the past 3 years that he suffers from PTSD the same as I do.  It’s hard for him.  I remember at one point, after a shock, I told him I was scared, I have never expressed that to him before despite all I had been through and he was terrified that I was going to give up.

 

I vaguely remember being moved to the Cath Lab for the procedure the next day and being told that they were going to leave my device on.  The last time I had this done, my device was disabled and replaced with external defibrillator pads and then they must have put me out.  I woke up crying, my chest was stinging, I had obviously been shocked but not by my device, I quickly realized that they were using external pads at this point and the electricity was connecting with the sweat between the pad and my skin, it was painful.  The doctor started talking to me, he was saying that we had been in the lab for 4 hours and he had burned 30 spots inside my heart, he said he was burning one at that moment and asked me if I could feel it, I certainly could.  He also said that every time he burned a spot, another would pop up, he was chasing something that couldn’t be caught.  It was decided that there was no point in keeping this up, I was worn right out, the procedure was deemed unsuccessful and I was moved back to CCU.

 

I continued to receive shocks the rest of that day, night and into Friday morning.  My device battery was dangerously low from administering so many treatments and the decision was made to give me a new device rather than simply change the battery.  When implanted, these devices are meant to reside for 10 years or more until they need a battery replacement, mine was dead in just under 3 years.  I was scheduled for replacement on Saturday December 20th.  I don’t remember much during the time between my visit to the Cath Lab on thursday and my trip back on Saturday for my device swap, but there is a picture of me smiling and waving for the camera just before they took me to have this done.  I am now the proud owner of a new St Jude Medical device, now with an atrial lead as well as one was put in with the new device.  I’ve been told it’s because there may need to be med changes in the future and they may need to pace the top of my heart, they would use the new lead to do that.

 

I would not be surprised to find that the final tally for shocks was in the 100 range and for something that gave us so much hope, it turned out to be a very horrendous experience, one that has left us both shell shocked and still trying hard to deal with.  In fact, it’s now 5 weeks today after the procedure and I finally felt I had that strength to sit in it and write about my experience.

 

Up until this point, I have been quite happy to be a science project and to go through all of this for the greater good of patients like me in the future, but I’m afraid that at this point in time, I don’t want to be an experiment.  I have participated in every study and have agreed to many experimental treatments in hopes that I pave the way for the next person experiencing this illness. Tomorrow I have an appointment with my Electrophysiologist, the doctor that sent me for this procedure and we hope to get some answers as to how things went so incredibly wrong and what to expect in the future, but I am sure, only time will tell.  I really hope there is some stability.

 

I have a hard time especially at night, I am so afraid that I am going to die so every morning that I open my eyes, I am grateful.  They say time heals all wounds but it’s going to take both of us a very long time to get over this.  It’s been a long road and we were so hopeful that this was going to be the answer to getting our lives back in some way.  We live one day at a time and I never in a million years expected that I had the strength to deal with something as life changing as this.

 

Please don’t take today or tomorrow for granted.

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New Hope

Just when I thought there was nothing left for them to do for me, my amazing Electrophysiologist pulls a rabbit out of a hat and comes up with something.

 

One week to the day after being told I was a candidate for a heart transplant, but just not at this time, I had another shock.  I was devastated, I felt lost and in limbo, I was anxious, depressed and disappointed.  The device had been read when I went to the ER that day, we knew it was a legitimate shock so I tried to carry on all the time thinking that I was only reminding the people in charge of my care that I was something that they couldn’t fix.  I felt like they all just wanted me to go away, mostly because of the way the ER doctor made me feel that day.  The experience was dismal and it was the day I came to the realization that this was going to be my life and that I had better accept it and move on, something that I have not been willing to do, to this point, I was fighting for something that resembled my old life, maybe that wasn’t possible.  The ER doctor told me that I shouldn’t bother coming in after a shock, that there was nothing more that they could do for me, he said I should wait to see if things got worse or I should come the next day…he saw no point in me calling an ambulance and making the trip to the hospital, we all knew my shocks were legitimate and not caused by the device, both Douglas and I were taken aback. His bedside manner left something to be desired.

 

Almost two weeks after the shock, I made an appointment to see my regular cardiac doctor, I hadn’t seen him since the decision about my transplant so it was time for a strategy session.  When I walked into his office, he asked me if my ears had been ringing and mentioned that he had been speaking with one of his colleagues about my case.  There was a procedure that could be done if I was willing to have it, a procedure I had two years ago that now had updated technology that could work this time.  The procedure is called an ablation, it’s a rather routine procedure they do on people with arrhythmia, they go into the heart using a probe and they are able to burn the areas of the heart that are causing the arrhythmia. During that procedure, two years earlier, I was shocked 25 times, I had first degree burns on my front and back from the defibrillator pads used in place of my device, which had been turned off so they could better control the situation.  I remember coming back to consciousness after the 5th shock crying and totally traumatized, they put me under and I awoke many hours later back in my room.  They were cautiously optimistic that they were able to burn the appropriate spots but the doctor told Douglas that every time they moved the probe to find the problem areas, my heart would go into v-fib so it was difficult to tell. I had several shocks in the coming days, the procedure was not successful.  It’s very hard day to forget.

 

That brings us to now.

 

There is a doctor in Victoria who has been consulted on my case.  He is highly trained in Boston in the area of arrhythmia and ablation and there is a new probe being used these days.  I’m told that the new probe has 5 prongs and is much better at mapping the heart and he thinks that they have a 40% chance of successfully finding the problem areas with the updated procedure.  I am scheduled to be admitted to the hospital soon.  The idea that I have a 40% chance of never having to go through another procedure, another shock or a heart transplant is what helped me make the very difficult decision to go through with this procedure despite how traumatic it was the last time we attempted to do this.  Am I anxious?  Yes.  Am I terrified?  Definitely! there are many things that can go wrong but I choose to focus on all the things that can go right.  I remind myself time and time again that I will be in the best of hands and that helps a little.  I can’t let my fear stop me from doing this, something that has a 40% chance of giving me my life back.  I also know that this is the very last thing, there is nothing else except a transplant so I hope it works, I’m not ready to give up on this heart of mine yet.

“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.