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.

Comments

Damn brother, head up high and hang tough. Nothing but positive energy coming your way.

Keep the light shinin'.

OMG (non-ironically). Good luck. My thoughts are with you and your family. Damn.

Damn Ely, good luck and keep your head up. You caught it early when there is something to be done, all will be well. I need you to review my game damnit (and since its taking forever to actually finish it and you HAVE to review it, you got YEARS left!)

PAR

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

If you don't mind me asking, though, what prompted you to ask your GP to refer you to a heart specialist? Were you having pain or shortness of breath? I have to wonder if I am in tune enough with what my body is actually telling me. Sometimes it is good to just stop and listen to what it is saying.

Sending you the most positive vibrations, Sean.

That's pretty surprising news, but it's good that they found the problem now rather than later. My warmest thoughts are with you and your family!
I would start planning out your pile now, because you're going to be sitting on your bum a fair bit while you heal.

Sean, time to get your laptop fixed. You're going to need it after the op.

This news really astounded me. It's amazing how things can fall on folks from nowhere. I wish you all the best and hope you and yours are doing well and continue to do so. This shock of it all is probably happening now and the reality of it will sink in later and hopefully not cause too much distress. It's corny and cliche, but stay positive. You are so lucky to have the family you do and the support that comes from all quarters. Feel the love

Sending you all the best positive hippie dippie vibes I can muster.

I had open-heart surgery as an adult (10 years ago) for a genetic defect - basically a hole in my heart. I wasn't really nervous until a couple of days before when the pre-op tests and paperwork were done. Ask for Valium or something as soon as possible if you are really nervous once you get there (or even for a prescription now, although you seem to be coping well). Might as well feel pleasantly intoxicated for a while before you go under the knife.

Recovery is probably not as bad as you imagine. You're presumably not 19 like I was, but you're not the typical 60-80 year old either. They keep you quite comfortable on morphine for days afterwards, I was really never in any pain. Sure you're tired for a few weeks/months, but you use the time to relax with games or whatever else, as I did with Broken Sword and Shenmue, among others. Other important recovery aides seem to be The Golden Girls, Facts of Life, and the 2000 presidential election (I suppose you could just watch HBO's "Recount" for that). Also, the Friar's Club Roasts of Rob Reiner and Jerry Stiller if at all possible.

It's always hard to know what to say to an internet-friend. It's my firm belief that human contact is the most important thing to experience in situations like this. When your back is against the wall you want to know that there are people out there who care.

Best wishes.

You're a dead man walking Sean. Get your affairs in order now.

In all fairness, we all are. Death is such a frightful bogeyman to laymen because to them (and you), death only ever happens to "other people." Working with deadly conditions and near-death situations on a daily basis has convinced me otherwise. We are all dead men. We were just given a momentary reprieve to experience this world and get to know our loved ones for a short span of time.

I hope that this experience, should you live through it, not only reminds you on a daily basis of annoying medicines and uncomfortable regular tests and procedures. I hope it reinforces in you the thought of your own daily imminent mortality. You're old enough now for us not to pussyfoot around this. You were going to die sooner or later. Did you want to live forever?

This is the most compelling reason for you not to put off for tomorrow what you can be doing today, and that includes the most important things for which we are here on this earth.

You know what those are, so get hopping, Sands.

Spoiler:

If it's any comfort, you are in an industrialized nation and open heart procedures today are nowhere near as risky as they used to be. Lots less painful, too. A gallbladder removal is more painful. Heck, childbirth's more painful. You've got a decent chance, but don't let that keep you from doing what you need to do.

I wish you the best of luck, Elysium.

Jeez. I'm not religious, but you'll be in my thoughts. I hope for the best.. Damn, I don't have an appropriate pun or jibe for this situation..

sh*t... the bare thought of this made me queasy, and I had to sit down.

I would also try to find comfort in the numbers, run them in my head over and over again. And there is some comfort to be found in those numbers. For what it's worth, you know we'll be here cheering for you, before, during, and after the operation.

More importantly, I'm sad that we won't hear you on the CC for a while around the operation! So if you want to play some chess while you recover I'd love to oblige. Hell, even right now!

Come on Sands, let's what you're made of!!!

Ugh. Good luck and all the best, Sean...

OMG! Is Niles OK?

I'm filling up reading the forum love here.

Good luck.

Good luck Sean.

What made you walk into the doctor's office to have your heart checked in the first place?

As someone whose father and sister both have heart issues, I feel for you man.

I hope it all turns out as perfectly as absolutely possible for you.

I'm starting to get a little jealous, apart from the painful breathing and Jonman's demonic possession.

Shoal07 wrote:

Good luck Sean.

What made you walk into the doctor's office to have your heart checked in the first place?

An angel, Shoal07. I'm hopeful that it isn't quite Mr. Sands' time to go quite yet. Without knowing anything about his case other than his extremely general outline, I estimate the odds in his favor. In any case, knowing this much at least gives him time to set his affairs in the order all our affairs should be everyday. Not everyone gets this chance.

*hugs*

We see folks who have been through what you are facing right now rather frequently where I work. Stick to what ever the medical professionals suggest and the outcome is likely to be fine I would also recommend that you ask Elysia to make you a lovely pillow that is 14 to 16 inches square or heart shaped. It will be very useful for after your surgery to hold against your chest for support whenever you stand up or cough. Also, lay in a supply of bubbles. It is normal to breath shallow after the surgery you are facing. Nothing helps prevent pneumonia like blowing bubbles
Or if you prefer, you can practice your harmonica or kazoo skills

Best wishes Sean.

Wow, scary stuff. But it sounds as if you have the best attitude to get through this. All the best and heartfelt wishes that everything turns out well.

Best wishes

Good luck Elysium.

Best of luck my friend. Give me best to your family for me as well.

Best wishes to you and your loved ones Sean.

Best wishes to you and yours, Sean.

I'd give you mine, but it's black and shriveled. Good luck, Mr. Sands.