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

Take inspiration from my Hero Jean Luc-Picard. (If the images don't show due to my technicial incompetence, use the links).

IMAGE(http://memory-alpha.org/wiki/File:Jean-Luc_Picard_stabbed.jpg)
IMAGE(http://memory-alpha.org/wiki/File:Picard_during_surgery.jpg)

http://memory-alpha.org/wiki/File:Jean-Luc_Picard_stabbed.jpg
http://memory-alpha.org/wiki/File:Picard_during_surgery.jpg

"Owing to a near-fatal stabbing through the heart in 2328, a cardiac device was implanted to save Picard's life. The unit required replacement when it malfunctioned in 2365, overseen at Starbase 212 by Dr. Katherine Pulaski. Four years later, the unit was damaged and again replaced following a near-fatal Lenarian compressed tetryon weaponry attack."

Also be advised, I believe sometime after this incident, he was assimilated by the Borg, so watch your back.

Hey Sean: This is Strangeblades' wife actually. He was telling me about your heart condition because I had a very similar situation. I was operated on for it in 1987. I now have a lovely artificial valve that ticks quite loudly (in comparison to the non-ticking of a normal heart!). I have nothing to scare you with... The only thing I can say is that you will feel better once it's done. One thing... the first 2 or 3 days of recovery hurt like hell (try not to laugh, okay - trust me!) and you feel totally helpless, but the good news is, it's so miserable you'll forget about it really quickly.

"They" do this surgery all the time... no worries!

Kat

Seriously, guys. Thanks for all the good wishes, information and kind words. It really helps.

Wow, Sean, good luck with everything. That's some heavy stuff.

Good news everyone! Examining the CXR above, I have discovered that Elysium in fact has a giant cracked pointy thing stuck into the top of his heart. My extensive training on Operation! has made me an expert in the removal of these sorts of things. So no worries there.

On a more serious note, best of luck. The surgeons I've worked with have been staggeringly good at what they do, and I suspect that your CT surgeons will be nothing short of superb. I sort of wish that I could scrub in on your surgery, partly to provide a Goodjer presence, and partly to see if I got an achievement unlock from it.

Coldstream wrote:

Good news everyone! Examining the CXR above, I have discovered that Elysium in fact has a giant cracked pointy thing stuck into the top of his heart. My extensive training on Operation! has made me an expert in the removal of these sorts of things. So no worries there.

On a more serious note, best of luck. The surgeons I've worked with have been staggeringly good at what they do, and I suspect that your CT surgeons will be nothing short of superb. I sort of wish that I could scrub in on your surgery, partly to provide a Goodjer presence, and partly to see if I got an achievement unlock from it.

Tell them you're the representative of Sean's editor, who happens to work in malpractice insurance. (Nevermind that I don't do medical malpractice.)

Good luck Sean.

best wishes.

Wow.

Best of luck, Sean.

Elysium wrote:

Seriously, guys. Thanks for all the good wishes, information and kind words. It really helps.

If you would like to add homemade goods for you and the family on there (be it from a total stranger), multiple goodjers can tell you I'm able and willing to send some. Don't hesitate to turn to this community for anything.

A thought occurred to me on my travels today.

It might be worth you stockpiling a few humour free audiobooks that you can listen to while recuperating. If you fancy a western (and haven't read the book or seen the film) I'd recommend Cold Mountain by Charles Frazier. I popped it on one Sunday afternoon, thinking I'd listen to five minutes before doing something else, and ended up listening to the whole thing in one sitting. Also, collections of Science Fiction short stories seem to work very well. I personally avoid tales with a vast cast of characters, especially murder mysteries, because I can never remember who did what to who.

If he wants something humor free to listen to all he has to do is listen to excerpts of Certis from the podcast. Bazinga!

Sorry to hear the news. My wife had open heart surgery when she was 3 months old. She still has a hole in her heart, but it is minimal. The only real issue she still has now is the pill she has to take before she goes to the dentist (to prevent bacteria = bad for heart). Oh and the fact that the said pill messes with her daily pill; our chances of having children goes up drastically.

Best of luck with the surgery and the post op. May your only concern two years from now be the huge pill that you have to take before going to the dentist.

Best wishes from a lurker on the forums but a great admirer of all the work and writing/podcasting you all guys do.
You and your family will be on my prayers.

Sean - all the best to you and yours. You'll be in our prayers.

I'm a long-time podcast listener who has never previously joined the site, but I thought I would finally take the plunge so I can wish you the best of luck with this. I'm sure you'll be fine - I'm not a doctor but I play one on the internet so you can trust me completely.

One more "best of luck Sean".

Good luck, and get well soon!

Count me dumbstruck into optimism.

It will work out well for you. Karma. Trust in it.

Stick to the empirical thinking.

Good luck Sean! We just had a friend go through surgery for very nearly the same thing (mitral valve in his case, I think), and he's recovering well. We'll be thinking of you.