De-Fibrillation Day....NOT.

They got me excited this morning...don't eat anything, your on the schedule for your ICD implant today!!  Whoohoo, maybe I could start thinking about home.  Reminds me when we heard that word for the first time with Payton.  Perhaps I should post a blue bird on my dry erase board :).

Alas, it was a tease. I spent the day navigating visitors, turning other visitors away (especially the ones that I hope to maybe see once I got home that night...sigh.  I should have known.   One step forward, two steps back.

Still, today wasn't a total wash.  My old OB came up for a brief visit and put a bug in my ear about speaking with the surgeons about placing the ICD under my breast muscles rather than up near the collar bone.  I was now on a mission to minimize the visibility of my ICD and fight for my right to let my vanity dictate some of my medical decisions...decisions I had very little control over.  So this was right up my alley of being a worth cause. 

Also, some of the heart literature I had been reading talked about how its well known that men get preferred treatment over men for heart related issues.  So this 'new idea' (new to me, not so new I'm sure to others familiar with ICD implants) was going to be me playing my part in paving the path for women to have higher expectations in their treatment.

Alas, when I finally sat down with the resident and asked my question about the placement of the ICD, his response was that it was a slightly higher risk.  I balked...I don't need more risks in life.  Still, he said its definitely something we can review for my procedure, brushed off the increased risk making me feel like this was a valid and worth request, and as such it will be discussed with the surgeon as an option.

Did I mention there was no ICD surgery that day?  Oh yes I did, the Argentine shuffle...

Anyway, the day in the hospital wasn't a total wash.  I also met one of the team members from the BC Inherited Arrhythmia Program in regards to the possibility that my condition is caused by ARVC.  Despite the fact that the biopsy results are not yet back she wanted to initiate the discussion and get the ball rolling on some of the things since there is such a lag time.  If the results show no sign of ARVC she can easily cancel any request without issue but this way we are expediting the process ASAP.  I won't delve too much on what we discussed simply because its a lot of information that may have absolutely no bearing on me depending on the biopsy results.

Today I also finally got my signal-average ECG.  No surprising results there, rather it simply confirmed what they were already looking at. 

As for tomorrow, I have been given a 90% chance that my ICD surgery will take place. I have been given a small chance that this will result in me going home tomorrow...more likely, if the surgery takes place tomorrow, I'll be home on Thursday barring no complications and my ICD isn't a lemon.

PS - I'm still feeling well.

Still Alive!!

Did you know that most deaths in hospitals occur on holidays or the weekend? 

Well, happy to say that by Monday I had survived 2 weekends and 1 holiday.  Still Alive!!

One thing I realize I haven't noted through this whole experience is how I have felt.  Aside from the really shitty feeling of being told "we are just looking to extend your life expectancy" and hearing the words "heart transplant candidate" I have felt great even before I stepped into the hospital.  In fact, the only time I have felt crappy is when the medical staff have been at me, medication to try to reset my heart rate, poking me to place more than 8 IV's, daily blood draws, beta and ace inhibitor medication. 

But still, I feel healthy, I feel strong and I feel like I should be any place but here.   So for anyone who's hoping I "feel better soon", its worth noting that I feel great.

Monday was one of the more memorable days of my life...the day I got my heart biopsy.  For anyone who ever has to have one of these unpleasant experiences, I have only one recommendation...get the sedative!!!!

I was told it was a very non-evasive procedure but I have to say that I have never felt so violated in my life.  They went where no person should ever go!!  And the memory of that experience is not even slightly dulled much to my chagrin.

When I heard the doctor (surgeon? are they considered surgeons?) say "no, not that one, that's the artery, that ones the vein" I saw my life flash before my eyes.  At that point, scalpel at the throat, I was too afraid of any unexpected movement to say "perhaps he shouldn't be practicing on a patient that has barely lived half their lifetime!!"

Thankfully, I survived and ironically the entry hole isn't quite as big as I thought it was going to be when the not-so-experienced-surgeon said "I need more scalpel".

Now we just wait.

MRI Day

"There is a lot of damage to your heart" are the words that I remember from the doctor as they explained the MRI results.  These words stand out in my mind. 

There are a few other phrases that also stand out during this conversation "continuing deterioration", "heart transplant candidate", and "likely genetic"...the last being the one that has resulted in more tears than any of the others.

In a nut shell they explained that the MRI showed a lot of scarring on my right ventricle and to their surprise, it also showed scarring on the left ventricle.

Alas, there is one obvious reason for the right ventricle damage, and an obvious reason for the left scaring. 

Right damage: AVRC (a genetic disorder that causes scarring on the heart, typically seen in the right ventricle).

Left damage: Myocarditis, caused by virus.

No obvious reason for damage to both ventricles.

Next step, CT scan...this was completed within two hours of them delivering the results. 

From there, they wanted a heart biopsy.

Also talked about on Friday, MRI day, was the plan to place a de-fibrillator or ICD before I left the hospital.  That no matter the reason for the damage, the ICD was needed to fix or correct when another episode occurred as they don't know whether another episode could be the one that results in sudden death.  Nuff said.

Friday was a long day.

The First Few Days of the Rest of My Life

My first day at St. Paul's Hospital in Vancouver was a strange day.  I was given a few tidbits of information, information which didn't mean much to me.  Mostly though, there were a lot of questions asked to me...a one-way communication channel for the most part. 

I did have a name for what I had just experienced.  VT was the only way I could remember what it was.  No phone, no computer for that day I was at the mercy of what little bit of information was given to me and even less of that information made any sense to me.

I still thought that my event was closely tied to my dad's Atrial Fibrillation issues.  It took another day till I realized that our issues (different result in a different part of the heart) were not related at all.

One of the questions that was asked repeatedly was "is there anyone in your family who has suddenly died?".  This question was asked in about 6 different ways (if you can imagine this question being asked in different ways, "anyone in your family who has just died mid conversation?", "anyone in your family who may have drown?" or "anyone who was in a car accident?".  Apparently sudden death in various circumstances can have unfortunate results depending on what your doing at the time.

Alas, it took till Tuesday for me to understand to a very basic degree what was happening.  I had experienced ventricular tachycardia. The tachycardia was coming from the bottom of my heart at the apex between the right and left ventricles.  The ECHO (a fancy ultrasound) showed a heart that wasn't working as it should.  A few metrics were given, 2/3's of how it should be working or 40% (which sounds scary but apparently the average heart works around 50-60%?? if my source can be relied upon).  At this point I had had several ECG's (one while the VT event was occurring) and an ECHO.  From what I understood, the ECG was abnormal and the biggest worry from the ECHO was that my right ventricle wasn't squeezing properly and it was enlarged. 

It was then that I was given the talk about how serious my condition was.  I was lucky and that what was happening was 'very serious'.  Had I been 60 I wouldn't have even made it to the hospital...the fact that I was able to drive myself to the hospital was apparently somewhat of a feat.  For the record I felt fine, even when the VT episode was happening. To a point where, unless I was lying down, I couldn't tell it was happening and I almost turned around to come home thinking it had passed.  Ironically enough there's strong suspicion that I had an episode riding up Legacy Trail and thus I would have descended Angry Midget while having a VT episode...if I can ride a black diamond trail I can sure as hell drive a car...well, unless that pesky sudden death symptom occurs.

On Tuesday they estimated I would be in the hospital about a week and I was moved out of the CCU into the Heart Clinic, a much easier place to hang out and they set a game plan. They wanted an MRI and a signal average ECG.  It took till Friday for my MRI.  The results were available immediately and the results weren't what we wanted.

Hello Old Friend

Hello old friend.  It’s been a while since we came to visit here.  Since we last saw you many wonderful things have happened.  Olivia and Payton have grown and kept us on our toes, both girls have started school (Olivia in Kindergarten and Payton in pre-school), Renee has started on a different career path as an Advisor with a financial institution and Dwayne has continued doing some of the work he did years ago and also has assumed control of the household, staying home with the girls most days.

Renee, Olivia and Payton during our Dawson City, Yukon visit.

Life has been wonderful, full, perfect and best of all…boring.  But unfortunately our household dances to a different beat. Boring isn’t in our cards.  Perfect is for wimps and full and wonderful?? Overrated.

On October 9^th, 2014 Renee (I/me for the remainder of this post) after a long day on my feel laid down with Payton to put her to sleep.  Feeling restless, both Payton and I turned.  Perhaps she had an intuition?  Perhaps she just got used to late nights given how busy I’ve been with long days.

Regardless, we bed hopped, me trying to find her a place she would settle, her fighting sleep with all her being. In between all that I continued to feel restless.  Unable to lie in one spot for long, and if I laid on my back, every once in a while I would gasp for breath.  Also, I was cold.  Cold to my core.  So up I got, had a hot shower and then crawled between the sheets where Dwayne wrapped himself around me to keep me warm.  I finally slept.

For the next few hours I would wake momentarily grasping for breath.  Once I got up to get some water…unsure why I felt so restless.  Warm finally I was able to get back to sleep again.  Around 2 I woke up gasping again.  Sitting up in bed I debated going to the hospital. I felt wired. I felt jittery.  I checked my heart beat…it seemed light and fast.  Huh.  I have Atrial Fibrillation just like my father.   What did Dad say about it again?  Oh yeah, his doctor said 1/3 of people live with it…not immediately dangerous.  Go back to bed, I have a conference to attend to in the morning.  Wait, I’m only 40.  That can’t be good.  And plus, if it’s still going on in the morning I’ll likely have to go then and I’ll likely be late for the conference. Better to go now and be tired, then go in the morning and be late.

Attending the ER in Squamish the nurse met me with a slightly annoyed look.  I mentioned atrial fibrillation, the look turned just a tad more annoyed (or so I thought given it was 2:30 in the morning and quite frankly no one wanted to be up at that time). After some questions, my temperature and my blood pressure, the nurse took my pulse…185.  Impressive but for all the wrong reasons.

The night spiralled down from there.  A hook up to an IV, a quick ECG and positioning the de-fib paddles “just in case” the doctor proposed a game plan.  We’ll use medication to slow the heart…if it doesn’t work we’ll have to shock you.

I’m a bit light on details here but in a nut shell I remember the drugs NOT working, I remember dry heaving, I remember feeling woozy and I think I recall the mention of blood pressure dropping 60’ish /40’ish.  I heard them say they couldn’t wait for the anesthesiologist.   I thought “damn, this is going to hurt”.  Fortunately for me the anesthesiologist arrived like a white night, coming through the doing saying “I’m here!”.

When I woke my first thought was “well, I survived”.  The fun was short lived.  Next step was not a simple “you’re going home and call your doctor on Monday”.  Instead it was a trip to Vancouver via Ambulance and the statement from the medical team in Vancouver “you’re here for at least a few days”.