A Slowly Breaking Heart

Surprisingly, the first thing I thought of when they told me that my heart was broken was Niles Crane.

For those not well versed in mid-90s television situation comedies, Niles is the younger brother of Frasier Crane, a neurotic, obsessive hyper-intellectual who one could describe as a “lovable dandy,” if one were inclined to use such terms. In one particular episode, due to a series of extremely unlikely coincidences that occur to and around him, Niles becomes convinced that a minor pain is actually referred pain caused by a serious heart condition. Eventually, our paranoid protagonist convinces himself that he should seek medical attention to finally refute his extraordinarily unlikely assumption. Even as he is apologizing for wasting the doctor’s time with such obvious nonsense, it is predictably revealed that Niles is facing an immediate medical crisis after all.

This was not at all dissimilar to how I felt when I asked my general practitioner to refer me for some routine heart-diagnostics tests, only to discover that I have a serious genetic defect and will likely undergo open-heart surgery this summer.

I have a bicuspid aortic valve with moderate regurgitation which has caused a 4.4 cm ascending thoracic aortic aneurysm. In normal person terms, this means that the doorway from my heart to my aorta doesn’t close properly, and so as a result the hall just beyond that doorway bulges out as if Neo had just discovered that he is The One inside of it. As you may or may not suspect, “bulgy heart bits” is not generally considered a desirable trait; worse still, it’s something that will only ever get worse. Put bluntly, my heart is blowing a very troublesome balloon out of my aorta, and eventually the most critical part of my circulatory system will do what every balloon does when you fill it with too much air (or blood).

If I do nothing, eventually this will kill me.

What is surprising to me is how easy it was and even is now to absorb this information. I really would have expected far more personal histrionics upon realizing that a surgeon was going to crack me open like an oyster and shut down my heart for a few hours while he pokes it with metal things. Instead, it was such a departure from what I had expected that I have been more or less befuddled by it. It feels a bit like walking in for a flu shot and having someone fire a bazooka at you instead. It’ s just too big to process immediately.

You have to understand that I’ve never gone to the doctor really expecting anything to be meaningfully wrong—and until now I’ve batted 1.000. The worst thing that’s ever happened to me is discovering the hard way that I am significantly allergic to a number of particularly foul-tempered flying insects. Even that has always felt more like an inconvenience than a serious medical condition. Other than that, I have to be openly blackmailed into going to the doctor for anything less than major trauma.

Now, I’m coming to terms with the fact that echo cardiograms, medication management, CT scans and all manner of unpleasant prodding are going to be a fundamental part of the rest of my life. And even that assumption is built from the foundation that everything will go perfectly for the doctors who will be rooting around in my exposed chest cavity, which still seems like a pretty strange assumption to be putting into the ‘given’ column.

I suppose if there were a reasonable chance that I might get better, or even that there was a better procedure on the horizon, I would consider waiting. But there isn’t, and there’s very little appeal in the thought of walking around for a few years waiting for my heart to spontaneously burst open like a pizza roll left too long in the microwave.

What’s been of particular interest to me has been the wide variety of reactions from friends and family. In truth, it’s obvious that my “condition” is affecting some of those closest to me far more at this point that it seems to be impacting me. Never will you so quickly see ordinary people turn into militant optimists than when you divulge a life-threatening condition. Following a brief moment of shock, most of the people I’ve told have pulled down the shades and put on a tone that says, “I don’t even know why you’ve mentioned this, because it is so obviously going to be completely OK—so OK that other things that are just-kinda-basically-OK are going to be jealous.”

There’s something very hard about seeing people be so scared of what’s happening to you that they can’t even face the prospect of worrying openly about it. I know how they feel, because even if I completely overcome this thing, it’s likely that one or both of my kids will have to go down this same road. I really haven’t even allowed myself to start thinking about that yet.

So, yes, I guess it’s affecting me as well. I suppose if you read the paragraphs above, you’ll see me doing basically the same thing those around me have been doing. Thing is, when it comes to something like open-heart surgery, worry is a black hole: You have to stay as far from the center of it as possible, because you know there is an invisible event horizon, and if you cross it you’ll plunge hopelessly into inescapable panic. I mean, when it comes right down to it, how do you deal with the fact that someone is going to stop your heart for a while?

Maybe you know, but I don’t.

So, I will be an outside observer to what is happening to me, for now at least. I will look at it clinically, wash myself in the numbers (thousands of cases per year, a 1% mortality rate, roughly 5% chance of serious, life-changing complications, a day in the ICU, a week in the hospital, a month of suffocating exhaustion, a pill a day to keep my blood pressure in check, 3 months to the next CT, a lifetime of blood thinners). I will create something in my mind that I can examine empirically instead of in terms of uncertain fears and an infinity of what-ifs.

That works—most of the time. It’s no surprise that late at night, as I’m drifting into that living-death of sleep and I hear the echo of my heart beat in the springs and coils of my bed, when the whisper of blood is loud in my ears, I see the knife cut into my chest. I feel the break in my rib-cage. I envision the spinning machinery of the heart-lung machine that cycles my blood, and I see my exposed and unplugged heart suddenly stop.

And I listen to the sound of the beat in the coils. And I wait to make sure the rhythm of my life doesn’t stop.


muttonchop wrote:

On the plus side, you'll probably have a pretty bitchin' scar from the surgery.
Also, you should ask your doctor if they can install an arc reactor at the same time.

I like this idea. May as well go all Six Million Dollar Man on you while they've got you under. Better, stronger, faster...

Best of luck, Elysium!

Best of luck to you Sean.

The good news is that you caught it. Aortic dissection is nothing nice. I'm confident that everything will be fine. Yay! random internet guys says it will be ok!...yeah I know. Best of luck with the coming surgery.

We're all pulling for you, Sean.

We're keeping you in our prayers.

I had a similar surgery a few years ago (when I was 32). Unlike your condition, mine was fairly well-documented from the moment I was born, so we knew it would eventually require surgery. I had aortic stenosis (one of the three flaps on the aortic valve was malformed), which eventually caused what you describe as "bulgy heart bits".

The surgery went very well. They replaced my valve and a portion of the aorta (the part of the artery immediately past the valve) with some donor parts.

When I was in recovery, the hardest part was strengthening my lungs again. Because they went through the sternum, it was painful to take a deep breath. Most of my recovery time was spent working on my breathing. The staff gave me a big heart-shaped pillow to squeeze against my chest as I did the breathing exercises, and it really helped.

And even though it didn't feel like I would ever fully recover, I was outside playing volleyball with my coworkers exactly three months after surgery. And I was amazed at how much more energy I had after the surgery. I felt like a new man!

I'm sure you'll be fine. Just make sure you do the breathing exercises... even though they hurt.

Hang in there, Little Beavis!

All the very best to you Sean, wishing you a speedy repair and recovery.

You and your family will most certainly be in our thoughts.

Thank you for the gift of your honest writing. The idea of the black hole is powerfully evocative.

Good luck buddy, sort that sh*t out. You're the voice of sanity on the podcast and would be sorely missed...

(seriously, sort it. I knew a guy who was diagnosed the same way and wasn't lucky enough to get to the operating table in time)

Wishing you the best of outcomes.

It's important not to engage with a text when editing. This one was difficult.

This reminds me I was told I had some heart murmur when I was young and I never went to the doctor... So like did it start hurting or something?

As someone who had a similar sort of scare only just recently I know how you are feeling.

Stiff upper lip Sean, all the best.

You can do it! Pawz had open heart surgery on the same day that my daughter was born and she's now over 2 years old.

Just stay strong and maybe lay of the Coronas

Yeah I can relate to the shell shocked feeling. I went from 'I'm perfectly fine lets get a routine medical checkup so you can get your Australian visa' to 'holy crap your heart sounds terrible we need to cut you up ASAP!' I remember sitting in the surgeon's office as he described the procedure and the risks associated with it (4% chance of fatality on the table for my particular case), and I remember wondering why they even bother telling you when the chance of fatality if they DON'T operate is like 100% in 3 months or less.

Anyways, what MervinBunter said - the breathing afterwards is the hardest / most painful part! I went through a similar operation 2 years ago (replaced my aortic valve with a mechanical one). All I can remember is holding my wife's hand just before passing out in my hospital room, and then coming back to consciousness slowly with the feel of the tracheal breathing tube getting pulled out. Since, apparently, when you're awake you don't deal very well with having some machine's tube shoved into your lungs :). The first couple breaths hurt like crazy even with pain meds, as you need to reinflate your lungs. And don't even talk to me about sneezing. Why is it when someone says "Don't do this" your body immediately does the opposite??

But, recovery for me was quite rapid (I was back at work 5 weeks later). It's incredible what they can do nowadays!

So all the best Sean! You can join our ranks of the cybernetically enhanced soon

Edit: I should really stop telling Blacksabre which thread I happen to be reading -_-

Elysium wrote:

I mean, when it comes right down to it, how do you deal with the fact that someone is going to stop your heart for a while?

Maybe you know, but I don’t.

Indeed I do know. I had open heart surgery as a 13 year old, to correct a sub-aortic diaphragm, which was partially obstructing the aorta.

I daresay that my response to the experience as a grown man would be different now than it was then, but back then, it was an adventure! I mean, a full on odyssey into the magic of science. My heart was going to be temporarily replaced by a machine, and people were going to dig around inside of me. I was truly living in the god-damn future. It wasn't scary, it was exciting.

If it's even possible to for you to take my advice, here's what I've got for you, based on my experience of 20 years ago:

(1): Ask questions. Lots of them. The more you understand it, the less scary and the more fascinating/awesome it becomes.

(2): Be prepared for the first 48-72 hours after surgery to suck, and suck hard. You will hurt, but there's pain meds for that. You'll have been under enough anaesthetic that you're not going to be yourself when you first come around. Warn your wife about that. My mother was slightly traumatised by her 13 year old son swearing like a sailor at the nurses while his eyes were rolling back in his head. Consider having her keep the kids away from you until you're awake and aware enough to be yourself, because I could see that being traumatic for them.

(3): This should be self-evident, but TAKE IT EASY! You're going to have to relearn how to get yourself around for the first few weeks. You're not going to be able to use your pectoral muscles at all, because that's going to pull on the healing scar. Practice getting out of bed without doing that - that was a key trick for me getting back to being more independent. I had to roll to one side (without using your arms to push yourself, because you won't be able to), swing my legs over the side of the bed and use them as a counterbalance to lever myself up using my abs.

(4): Lean as heavily as you need to on your family - that's what they're there for. Don't let dumb macho pride get in the way of accepting help where you need it. Call in favours from your friends that live locally, they'll most likely be happy to help. I would see if you can't find some of them to take it in turns to come round your house a couple of nights a week to cook your family dinner and do domestic chores, to offload some of that from your wife, so she can spend some quality time with you and the kids instead of playing nursemaid 24/7, at least for the first couple of weeks when you're at home.

(5): Plan your convalescence area, whether that is your bedroom or the lounge or den. You're going to have several weeks with not much to do but sit still somewhere. Fortunately, technology has your back more than it did me circa 1993. You're probably going to struggle to use a mouse for any length of time thanks to the lack of upper body mobility, but a controller will snugly fit into your lap. I played me a lot of Sega Genesis in the summer of '93. Set up the things you'll need within arms reach.

(6): The game's not over when you leave the hospital. Pay attention to what your doctor tells you in follow-up appointments, and DO WHAT THEY SAY!

(7): Chicks dig scars. Also, make up some hilariously bogus stories about how you got said scar. "Yeah, that was from when I got mugged by ninjas in Kyoto." End every such story with "you shoulda seen the other guy".

Good luck, sir, you'll be in my thoughts.

To keep it short and sweet, I wish you good luck, lots of strength for you and your family, and a speedy and full recovery.

Also, no shaving until you're back on the podcast!

That blows, man. I hope things get better.

Best of luck in everything.

The "flu shot / bazooka blast" struck home for me. I've just lost all hearing in my right ear. I went in to get what I thought was some wax flushed, and it turns out I may have had a localised stroke, and run the risk of not hearing again through that ear.

Take Jonman's advice, ask lots of questions.

I really identified with the "black hole skimming" too. Depending on what they find in the MRI I'm having in a couple of weeks (after intial CT scan and Audiology tests), they may need to crack my skull open. Fingers crossed the scan is clear.

My most sincerest and genuine thoughts are with you, and I'm shocked/relieved to see that the reactions I'm getting from my own news, are not just isolated to me, and my experiences. Thanks for that connection.

Jonman wrote:

(7): Chicks dig scars. Also, make up some hilariously bogus stories about how you got said scar. "Yeah, that was from when I got mugged by ninjas in Kyoto." End every such story with "you shoulda seen the other guy".

How true. I've got about a 5-inch scar that runs from right below my left ear along my neck to below my chin. It's from having a parotid gland tumor removed about 3 years ago. My sons were telling their friends I got it from a knife fight.

Best of luck to you Sean, my prayers are with you.

I sincerely wish you the best, Sean. At the risk of sounding like one of the militant optimists, the effects of this kind of experience--on your life, on your way of thinking and of seeing the world, on your fundamental appreciation of your life--can be a true gift.

Best of luck Sean and although it sucks that this is happening to you, be thankful that they found the problem in time. Medical science is a beautiful thing.

I'm glad you went to the doc and this was spotted.

I guess for me the weird thing about finding myself in a situation where I might have had a heart attack was that reaction you talk about - you're in a hospital draped with monitors waiting for tests, but besides that, you don't *feel* like you're in danger. If that's your feeling, go with it - I saw some people who were just terrified, and who needs that? Find out all you can and go into it with a good attitude, and we'll be there for you while you recover.

Good luck!

Sorry to hear about this, Sean. You will be in my thoughts. I wish I was a praying man at times like this.
We've dealt with our share of medical issues in my family, and I always take comfort that we're going down the right path...not an easy path at times but one that leads toward better health and recovery. You have found your way onto that path thankfully, and that's a good thing.

Be well, health trumps anything else.

I don't even know what to say other then you'll be in my thoughts.

I remember watching that episode with my mom when I was growing up.

Thanks for writing this powerful piece. Good luck!

Best of luck, Sean.

You and your family are in my thoughts - I hope everything goes really well and that you recover quickly!

Good luck Sean.