Eight months ago yesterday…

Eight months ago yesterday, I had my new ICD implanted after a very hairy experience in Victoria.  I suffered a lot of shocks and suffered a lot of trauma during the 5 days that I was there, but here I am, 8 months later, shock free.  Thankfully.

It’s a feat yes that the time has passed, but it has not all been easy.  There are nights when I am afraid to go to bed and days that I am terrified to leave the couch.  I still have many, many, sometimes hard PVCs  and although my device has been checked a few times, there is no record of anything sustained.  Doesn’t mean I don’t feel them and that they don’t scare the bejeezus out of me.

It’s hard knowing that at any moment, things could go wrong.  One beat in the wrong direction, and I reset to zero.  I try not to dwell on that though. I think that my biggest fear is that something will happen during the night, and for some reason, this new device, yet unproven will not do what it is supposed to do.  My next biggest fear is that it will happen on one of those rare times that I do something on my own, and someone will hurt me while trying to help, or that I won’t get to a safe position in time.  So many bad scenarios run around in my head, so much anxiety and stress around all of this.

My experience last December did a lot of psychological damage that has not yet subsided.  PTSD rules my world and it’s hard to forget all I have been through.  I have flashbacks, nightmares and even a few phantom shocks where I wake up startled feeling like I have been zapped.  Even smells sometimes will set me off and I am very intolerant of noise of any kind.

Now,I have to pay attention to how hard I push myself.  I can’t get too tired, too stressed, too eaten up with anxiety or my heart rebels.  I have to be super compliant when taking my meds every 6 hours so when that alarm rings at 5 am I can’t just roll over and go back to sleep,  I have to take that pill. I have become super vigilant with my body, I feel and analyze every single thing.  I am tired, all the time and often need to take afternoon naps.  I get these dark circles underneath my eyes, I know it’s time to stop. It’s hard to just…be.

Gratefully, I have found a few things to help me get through the tough times, art, meditation and spending time in nature.  Also, I have an amazing partner in my husband, who puts me often before himself, he makes sure that I don’t sit around feeling sorry for myself.  I still don’t do much on my own or spend much time by myself, I don’t have that kind of confidence yet and wonder if I ever will again.

I do know that am a better person because of all of this. I am learning to focus more on the positive things and to show myself compassion when I am feeling scared and angry.  I am learning to listen to my body and to rest when I need to. I am taking better care of myself which is something I have always had a hard time doing.  I am seeing the silver lining in the things that have happened these past almost 4 years.  I am learning to live like there is no tomorrow.  I have a much softer heart, a more forgiving heart, a more loving heart these days.  I am changed.

It’s been a long, hard, interesting journey, but I am getting there, slowly but surely.

P.S.  One of my most fav songs by Jann Arden is called “Saved”  I have not been saved in a religious sort of way but I have been saved from myself and a life that I have often seen in a negative light.  These lyrics always make me shed happy tears because I feel like I am finally becoming the person I was always meant to be.  It’s never too late.

“Saved”

Lived a good life
Lived a sweet live
Oh, I’ve had the sun on my face
I had fallen to my knees and been amazed
I have walked beneath the brilliance of a perfect sky
Oh I am saved
Saved
Lived a good life
Lived a sweet life
Oh I have a beautiful friend
I am breathless from the mercy of a smile
I am standing on the brink of the most perfect love
Oh I am Saved
Saved
I am saved
I believe
I am not going to be like I was
I have changed
I am saved
I have bitten off the pieces that I did not want
I have torn them into tiny bits of rain
Oh the sun has dried those memories like I knew it would
Oh I am saved
SavedI have bitten off the pieces that I did not want [2x]
Yes, I am saved

Writer(s): Jann Arden Richards

So, Wednesday it is then.

I got the call, that call I have been anxiously awaiting for the past couple of weeks.  The call about the appointment where they let me know if they will put me on the heart transplant list or if they will continue to monitor the situation I have been in for the last two and a half years, you know, the one where my heart stops out of the blue.

 

if you have been following along, you know that it has harshly affected my quality of life.  I can’t work, I can’t drive, I can’t leave the area, all I can do is wait and wonder when my device, meant to keep me from dying will have to jump into action to save me again.  It really has been hard to reconcile, all that has been going on, even though you would think by now I would be used to it.  I’m not.  Everywhere I go, everything I do, I have this niggling thought in the back of my mind, always wondering if this is the day my heart will go crazy and my device will give me another shock.  It was this very thing that has caused me to consider a heart transplant, in the end, even though I have been told by many doctors that I am replacing one disease with another, I feel that getting this transplant will be more predictable and will give me back my life.  I don’t want to be afraid of being alone, or of  going to sleep, or of being at the gym or meeting up my friends for dinner and it keeps me from doing so much.  I never thought in a million years that I would have to consider a heart transplant, me the organ donor, figuring the about the only thing I would have to give to someone was my heart.  WRONG!  DAMN THIS ARRHYTHMIA!!!

 

They left a message and when I saw who had called, I sort of knew what it was for, I’ve been jumping through hoops for the past weeks, being poked and prodded to determine my current state of health.  The fact that they decided to go through with the assessment was encouraging, but now it all comes down to a “committee” of people who will decide my fate, people my husband and I have been meeting with regularly.  There will be a cardiologist,  a psychologist, a heart surgeon, a social worker, and even an ethics person, they will talk about my case and debate whether or not this is the right time for this transplant to happen based on all of the information the have been gathering. I’m sure it will be a difficult decision based on the fact that I am outside the box when it comes to this sort of procedure. Every person being considered for transplant goes through this and I totally understand why this needs to be done, getting a new heart is a VERY precious gift, they want to make sure that the person receiving it has the best chance of long term survival.

 

Knowing it will only be a few more days has left me an emotional wreck, I’m happy, sad, anxious, terrified, relieved, impatient and excited all rolled into one.  I am trying hard not to have any expectations about what the answer will be and not to get too far ahead of myself, it’s hard considering all I have been through.  I can’t even begin at this point to think about the actual surgery and recovery afterwards, it’s just too overwhelming and until I know, it’s something I needn’t worry about,  I will try to remain calm until my appointment next week.

 

So, Wednesday it is then.  Wish me luck!

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.

 

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…