Twenty Months Later

Extract from Thoughts on a Pocket Watch

Upon corner shelf, dear Pocket Watch,
Your heart races much faster than mine.
And, yet, the gears both sound the same;
Two watches with finite time.

The tumbling and clicking of your cogs
Scarcely causes me fits of strife.
For whenever we finally sound our last ticks,
Our resonance will still echo in life.

 

****

Hello.

It’s been 20 months since I’ve been to this place, this repository of thoughts and feelings and experiences and reflections on my life and my heart.

Twenty months since, for the third time, I was cut open, massacred, reshaped, and sent back out into the world to recover and to attempt to live on.

And here I am. Still.

Last time I checked in, it was October of 2012.

So, first, the medical end of things.

In two visits with the good folks at the QE2 Health Sciences Centre in Halifax since then, my internal clockworkery has proven to be ticking on strong. I’ve been fortunate to have twice drawn Dr. Finley, a remnant from my childhood days at the IWK Children’s Hospital, as the consulting cardiologist on call in the cardiac investigations unit.

Dr. Finley is a shining example of what good doctors should be like. Genuine. Detailed. Patient. Willing to answer questions. Willing to volunteer information. And, after all these years, he still asks how my parents are doing.

Whenever we cross paths, he always enters the room, smile on his face, hand outstretched and, with a wink, says that he saw my file in the pile and made sure that he “was the one who got to see me.”

My most recent visit was on April 30. It was standard followup: an echo, an EKG, a visit with the clinical nurse, and then brief summary chat with Dr. Finley.

The clinical nurse, Joanne, has been following me around for quite some time too – since prior to my 2002 surgery, actually. She gets to ask the fun questions about smoking and drinking and drug use and exercise (in order: no, socially, no, and as much as I can squeeze in).

The end result from April 30 was that everything looks great.

Not quite two-and-a-half years after the installation of my artificial valve and the new section of Dacron in my aorta, there is no sign of leakage or imminent danger. We will, of course, be keeping an eye on the aorta. The pressure issues that caused the walls of my aortic root to balloon to nearly six centimetres could return. This time the impact would be felt near my aortic arch, with its three sub-arteries, causing a whole other set of problems.

But the artificial valve holds with it the possibility that the pressure issues could be minimized. It is, after all, designed to mimic a “normal” valve, and a normal valve wouldn’t cause such an aneurysm.

And, so, knowing that I’m feeling good – that there have been no severe dizzy spells, no intense pains, no unexpected issues – and knowing that my little titanium valve is ticking away as it should, Dr. Finley advised me that I wouldn’t have to be seen for another 18 months.

“Keep doing what you’re doing — keep being physically active,” he said. “You play hockey and softball — keep doing it. Listen to your body, but the more you do, the stronger your heart will be.”

Trust me, Doc — you don’t have to tell me twice.

And as far as listening to my body, well, with a pocket watch in my chest, I really don’t have much choice, do I?

It’s always there.

And I always listen.

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Stephen Colbert, your blood may or may not be thicker than mine (and it’s all your fault?)

As if remembering to take my Warfarin weren’t already hard enough, apparently alcohol, green leafy vegetables, fresh air, dryer sheets and the smell of shoes worn by a monkey all affect how thin your blood is. Okay, only two of those are true. Fortunately, this post is about how forgetful I am, so you won’t find answers here! Or will you … ??

So, it’s rather amazing what becomes “difficult” in your post-aortic-valve-replacement world.

In fact, for me, it’s really one thing that gives me trouble.

When I was younger, in high school, before my second surgery, I was put on a beta blocker to lessen my blood pressure and ease the strain on my increasingly thin aortic root wall.

It seems to me it was novo-atenolol.

It was nothing too complex – a once-daily pill that might, occasionally, slow the blood flow to my extremities, causing me to get dizzy if I stood up too quickly.

The problem at the time was, I’m wasn’t good at taking pills. And, I have to admit, today, I’m still not good at taking pills.

In my new life with an artificial valve, I am required to take some medication daily.

I have a tiny pink pill, metoprolol, (which is also a beta blocker) designed to regulate the rhythm of my heart and keep things firing normally. At first, I was taking a fairly high dosage in the weeks after my surgery (multiple pills each day), but in time I was advised by my family doctor, Lela Abud, to scale back the dosage.

More importantly, however, is the Warfarin that I’m on.

Warfarin is a blood thinner and it’s pretty key to my continued existence.

My blood needs to be thinned now in order to ensure that it will continue passing through my new aortic valve. If my blood were to remain at what would be a “normal” level, there is a high risk of clotting which could lead to a stroke and all sorts of other nasty business.

I have no intention of becoming a 30-year-old stroke victim. (If you’re curious, you can read more about Warfarin and strokes and aortic valves here.)

But back to the point here – I am horrible at taking pills.

By and large, since my latest surgery, I have done well ensuring that I take my daily dose of Warfarin (which, right now, is 4 mg).

But every now and again, I have a lapse – and last night was one such case.

I fell asleep while watching Stephen Colbert sometime after 12:30 local time. (It’s nothing personal, Stephen – I love your work, it was just a long day and you’re on an hour later here than in the Eastern zone. Do something about that, would you?)

By the time I woke (sometime near 3 o’clock), I had completely forgotten if I had taken my pills. I thought I had … maybe … but … wait … that glass of orange juice … was that tonight? Or was it last night?

After debating the matter for four minutes, in my incredibly groggy state, I decided that I must’ve taken my pills.

Of course! Why wouldn’t I have done that? My Warfarin is purple! It’s like crunchin’ down on Lucky Charms marshmallows!

In the morning, however, I was less convinced.

And this is where the problem came to bear.

I sat looking at the bottle in my hand in the morning, debating in an endless circle of logic:

Well, I MAY have taken it last night, but if I didn’t, and I don’t take one now, then I could face some serious clotting later. But, if I DID take my dose last night and I take a half dose now to augment what I may NOT have taken, then my blood will be especially thin and I’ll be more prone to bleeding out. Sooo … maybe I shouldn’t take it? But …

You see my dilemma.

And nevermind that I had two beers earlier in the evening and there’s that whole “alcohol impacting your INR – blood thickness thing.” Balancing social alcohol with blood thinners is a whole other discussion.

Anyway, this incoherent argument went on in my mind for maybe 10 minutes before I decided to self-medicate and take the half-dose in the morning, rather than run the risk of having my blood not thin enough.

I don’t generally endorse that. At all.

Take your damn pills when you’re supposed to, Hirtle.

But, it seemed like the safe thing to do. I would rather have blood that didn’t coagulate enough than too much.

Clearly, I need to come up with some sort of system.

Mayhaps it’s time to put a daily reminder in my phone.

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Slowly. Deliberately.

I’m not dead. It’s been a while, but I am still here.
I can promise you that.

On September 19, 2012, a Wednesday, sometime shortly after 9:30 p.m., I sat quietly, half dressed, in one of the hideous blue dressing rooms, deep below the aged benched seating of Bridgewater Memorial Arena.

There, in a space that probably looks frighteningly similar to how it did when the arena was first built nearly 60 years ago, I took a deep breath and began lacing my skates.

Slowly. Deliberately. Pulling each lace tight enough so as to leave a red indentation in my hand.

This is the first challenge.

I walked back on to a softball field for the first time more than four months ago.

As daunting as it was to face the prospect of a softball rocketing back up the middle at me, the local brand of lob ball was, for the most part, safe.

You have some degree of control and a moment or two to twist your body to get out of the way of an oncoming line drive.

That’s the only inherent risk.

I was never going to feel the unimaginable sensation of my heart blinking out while jogging around the bases or chasing after a pop fly.

Start. Stop. Rest.

That is softball.

It was made for the recovering cardiac patient – no pressures, little intensity, and you can be as aggressive as you choose.

Hockey is different.

It has always been different.

Especially here.

In June, three months ago, I played in the annual Play On! street hockey festival in Halifax.

For six years now, we have made the trek into the twin street lanes along the Halifax Commons that are shut down to host the event.

I didn’t feel out of place there.

My body wasn’t normal yet, but the level of intensity was such that I could – for the most part – keep up. It was only after a long quarterfinal playoff game that my body began to revolt and, like my team mates, I simply ran out of steam in a 5-3 loss.

I tightened my right skate and turned to find the tape to secure my ankles.

This is different, I thought.

Out here, there is more territory to cover.

That 200-foot sheet of ice sometimes feels a mile long.

Here, well-struck half-frozen pucks randomly find their way high, into a person’s upper body, careening with unexpected force.

In this place, catching a rut could mean careening into the boards or falling into the blade of a stick or skate and feeling the warmth of a fresh wound … a potentially lethal wound.

After the kind of surgery I’ve lived through – my bloodstream packed with Warfarin designed to keep my blood sufficiently thin to pass through my artificial aortic valve – these thoughts can’t help but creep into your head.

Tattered velcro on my elbow pads (barely) holds them on. Once upon a time these were new, but they have seen better days.

Most days, when I’m doing something and this kind of doubt creeps into my mind’s eye, I am able to quickly shove it aside.

I have control. I can protect myself.

You even sometimes convince yourself that the surgery was but a dream.

The tick, tick, tick, tick, after all, fades away.

In those heady, fuzzy days immediately following my February 24 massacre, my chest screamed with pain.

Breathing hurt.

Thinking about breathing hurt.

But since about Week 7 post-op, that pain has gone away.

I’m not sure what I expected – perhaps the occasional seizing up of muscle fibres and the odd stab.

But time has healed this wound – or at least its painful reminders – and, even the tick, tick most often drifts into the background, like a frightened animal cowering in the shadows at sunset.

It retreats.

But tonight, I am scared. Scared, excited, alive with energy and anticipation, yet very aware that there is a risk in stepping on the ice.

Hockey has tormented me.

I love it. Madly.

But it has been a love unrequited in many ways.

That’s why I’m scared, I suppose.

Never the time on the ice growing up that I should have had. Only the hours in the relative safety of the community pond to give me the practice I craved.

Never a game. Never a real one, at least.

Returning to the ice, September 19, 2012 – just under seven months post-op.

And, perhaps, that’s why I’m here.

Despite the risk, I am aware on some level that I need this.

It’s part of being alive.

I mean, why go through what I went through if I was going to spend the rest of my life carefully protected indoors, always wanting and wishing, but watching the world go past?

I pull the blue and white of a Rimouski Oceaniques jersey over my head, toss my helmet on, retrieve my gloves from my bag and walk, as steadily as I can, toward the dressing room door.

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La Vita Nuova – or, time to start writing again

Okay, hello, again, world.

First, I should apologize – it’s been a while since I’ve been here.

To bring you all up to speed, on Wednesday, February 22, I received a phone call requesting my presence the following day for a pre-surgical assessment at the QE2. If all went according to plan – as it did – I would have surgery on Friday, the 24th.

The good news is, I have obviously survived. It has been just over three weeks since my surgery, but I am slowly starting to reclaim my life. I go for walks. I am up to eating two meals a day. I have even made appearances at a couple of town council meetings.

But … to be frank about it, it hasn’t been easy.

And so much has happened over the past three weeks, it’s really difficult to know where to begin.

At first, I think, I didn’t come here to share my experiences simply because I couldn’t. My immediate days post-surgery were filled with drugs that, yes, dulled my pain, but also dulled my other senses in frightening ways.

By the time I was three days out of surgery, the haze began to clear from my head. But, as many times as I thought about coming here, I couldn’t bring myself to do it. Part of it was because I was in so much physical pain. I can’t even begin to come up with a reasonable comparison for what it feels like to have your sternum ripped open and torn apart.

Compounding matters further is the fact that I now sound like a clock.

In a crowded room or alone in the wee hours of the morning, the constant spit-spat-tack of the artificial aortic valve in my chest reminds me that life is probably never going to be the same.

Oh, I have moaned quietly to myself so many times these past three weeks, where do I even begin?

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Regeneration

“… and you know what? So was I.”

Somehow, in this moment, this reminds me of me.

There will be nothing further until this little regeneration of mine is complete … Timelords … no wonder I think they’re cool. Two hearts, you know … something to be said about that, isn’t there?

See you on the other side … tick-tock.

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A Clockwork Heart

So, pre-surgery assessment day – at least the medical, hospital-bound portion of it, is in the books.

I was up at 5 a.m. to be in Halifax at the QE2 Health Sciences Centre for 7 a.m.

The first two hours and change was filled with the very standard fare for anyone who has been through any kind of surgery before.

Sharing my full medical history and undergoing a physical. Meeting with an anesthetist to discuss my history with anesthetics and what sort of side effects I can expect. Blood work. A discussion with a clinical nurse about the self-prepping I have to do before tomorrow’s scheduled surgery, including washing myself down with an extra special germ-cleansing solution.

Stop all medication – no problem, I, somewhat miraculously, haven’t been on any since 2001.

By 9:45, all of those various items had been checked off the list. It was now just a matter of waiting to speak with my surgeon, Dr. Stacy O’Blenes, about my surgery.

An hour passed.

Then two.

Then three.

Now, the staff at the pre-admissions clinic were, of course, beyond good to me. The would frequently poke their heads around the corner or suggest I go grab a bite to eat. I was able to keep myself entertained between texting with the outside world and slipping out my netbook to enjoy a few minutes of Will Farrell’s classic, Anchorman.

By early afternoon, I was on the cusp of dozing in the waiting area.

I was the last remaining relic among the outlay of patients and admittees who had materialized first thing this morning.

Mid-afternoon, Dr. O’Blenes emerged, fresh from a procedure he was performing at the IWK Children’s Hospital down the road.

We talked about the procedure that was coming in the morning and, for the first time, I received word from the artist himself of exactly what the decided course of action will be.

Dr. O’Blenes confirmed that he would be replacing my aortic valve and that, with my consent, his preference was to put in a metal valve. A tissue valve (from an animal) would have a lifespan of about 10 years before it began to wear out. Not wanting to see me again, he strongly recommended the synthetic valve.

A metal valve, of course, comes with its own issues. They are imperfect devices. They tend to cause blod clots, which can cause strokes. I will be on blood thinners for the foreseeable future, until the next great leap forward in medicine comes along. What’s even more complexifying (yes, let’s make that a word) is the fact that my diet can alter the effectiveness of those blood thinners. Details to come on that.

The other big reveal from the good doctor is that he is anticipating widening the scope of the initial planned procedure. Not only is the part of my aorta below my existing Dacron tubing enlarged, but so, too, is the section above the tube, through the ascending aorta to the arch.

Dr. O’Blenes said that his preference, assuming that the wall is thinning where the enlargement is taking place, would be to replace that section of my aorta as well. Because of its proximity to the aortic arch – and its vessels – it is a riskier procedure.

My body will be cooled, my metabolism slowed, my brain supplied oxygenated blood through other vessels while the flow through my heart is completely cut off and isolated for roughly 20 minutes while the doctor stitches my new, larger Dacron tube to the foot of the arch.

As long as that sounds, there is still time to spare … they can keep me under, keep me alive without risk of damage for as long as 45 minutes using this technique.

While not completely confirmed, my feeling from what Dr. O’Blenes was saying is that he will, almost certainly, opt to replace the larger swath of the aorta, rather than just do a smaller piece and the valve and leave the upper section to nature.

The whole experience is loving referred to as the Bentall procedure.

So, where are you, Pat?

As happy as I am that I have a surgeon willing to take a strong and aggressive approach to a longer-term solution (I do love playing the long game), the increased risk of stroke associated with cooling me down does have me … anxious.

Not being blessed with beauty or a full, sexy head of hair, my brain is one of the true attributes I have working in my favour. I don’t like the thought of even risking starving it of oxygen.

But …

… if there is a chance that I can do this in one shot and maybe … maybe … avoid having to go through this life-wrenching process again for perhaps decades

… I have to do it.

It’s in my nature.

After all, safe is death.

So gear me up, boys … I always thought steampunk, Victorian-era replica clockwork stuff is cool … what better gift than a ticking, flicking clockwork heart?

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Hurricane

“Oh, you should always waste time when you don’t have any time to waste … “

Well, I knew it would be short notice.

Last night, a message left during the day on my home answering machine asked me to call the cardiac surgery folks – an operating room block of time was available …  on Friday morning … and it was mine if I wanted it.

I called early this morning – shortly after 7 – and left a message saying that I would take the spot if it was still there.

By 9:30 my call hadn’t been returned. Grasping matters firmly around the heck, I called them while sitting outside the new economic centre in Bridgewater, waiting for a meeting to start.

“We have a block of OR time available and the surgeon is available too,” the woman, Karen, on the other end said. “We know it’s short notice though.”

“It is, but then I knew it would be,” I replied. “I’ll take it … what do I do? When do you need me?”

Pre-surgery assessment and physical begins at 7 a.m. on Thursday morning.

On Friday morning, I am to be in Halifax at 5:45 a.m., a date with a knife to follow.

To say the rest of my day has been a storm is an understatement.

Two council-related meetings.

Running to Lunenburg to my office at Covey Island Boatworks to pick up my laptop and chat with Margie, our office admin guru and the glue that keeps us together.

A visit with Dad who, of course, insisted on calling mom at work right away.

A deep breath.

A realization that I have only barely begun to digest the ramifications of all of this.

A realization that a booking is not a sure thing – it’s just a time.

And a clock … with about 36.5 hours on it.

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