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

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Wow. Keeping you in our prayers, Sean; I don't know how someone deals with that. Seen it with family members, but not from my side of the fence.

Best of luck to you, Elysium. I'm sure that your surgery will go well, and I'm confident that you'll adjust to the changes in your life that your diagnosis entails.

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.

Is there any sort of testing that could be done to determine if either of them is affected? Any sort of preventative measures that could be taken?

Best of luck.

Good luck.. that's gonna be rough. All I can recommend is facing things with a sense of humor. Laughter may not be the best medicine, but sometimes it's all that keeps you sane.

Good luck, Sean.

Wow.

It may be trite, but the fact that you can share this here is such an awesome example of the community you, Shawn, Cory and everyone else have created.

The thoughts and prayers of my family will be with you and yours.

Best wishes to you and your family. If there's anything that any of the Goodjers can do, I've seen firsthand just how extraordinary this community you've helped create can be when it comes to rallying to a member in distress.

If it's at all helpful, a guy I served with in the navy suffered from a very similar condition. After surgery and a few months recuperation, he was deemed fit enough to continue to serve on active duty. The docs that do this stuff are pretty phenomenal.

Is there any sort of testing that could be done to determine if either of them is affected?

Yes -- that will happen in a few years.

Any sort of preventative measures that could be taken?

Absolutely none. It either will or won't happen. In a way, this is comforting to me, because the same is true for me. This is not a result of bad or good lifestyle choices. This is a result of genes.

Good luck, sending positive vibes in your northern direction. Much love from a random internet dweeb.

You've probably already heard it plenty of times but not from me so... I'm really sorry for you and if there is anything I might be able to do to help out don't be quiet about it.

Good luck man!

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.”

Unbound optimism is a wonderful healer. Placebo works best if you truly believe it will work. You have nothing to lose by being a hopeless optimist in this case. No amount of worry will make an iota of difference in your life until the surgery. So please, don't think for even a minute that anything can go wrong. Seriously. It's just a wart removal surgery. Nothing to stress about. Nothing to worry about. You'll be right as rain before you know it.

But know that you're in our hearts and minds. And all of our optimism comes your way in great heaps.

Best wishes, fella.

My thoughts go out to you and your friends and family. Hope everything goes well for you.

Holy sh*t, man. That is crazy. Good luck with everything. We'll be keeping you and your family in our thoughts/prayers/sending of good happy vibes.

This hits particularly close to home for me, since my dad and paternal grandfather both have/had heart problems, and I suspect that it's only a matter of time before I develop them as well. Good for you for going in and taking the necessary steps to protect yourself.

I wish you the best through this.

Damn, Sean. I know how you feel about not being able to process it. I had a similar experience myself when I was younger and my mother was diagnosed with breast cancer. I just didn't know how to process it, so I didn't really worry about it when they said the doctors were simply going to, you know, remove her breast. I only discovered this site maybe six months ago, but it's already become one of my most frequented places on the Web. Good luck with your surgery and recovery.

When I read the title I expected some sort of essay having to do with the death of Guitar Hero.

Elysium wrote:
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.

The Internet is such a wonderful place, where you know you have a caring, loving community full of people who will happily sit there and listen as you tell them about getting shot by a bazooka. And then will try to pick up all the pieces and help sew them back together.

Well, metaphorically speaking. I know almost nothing about internal human anatomy, and I can't sew. But you know what I mean. And in case you don't, it means we're here for you if you need anything.

Sean: first and foremost, thanks for sharing this wonderfully-written piece, and best wishes for managing your condition.

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.

This sentiment really resonated with me. My wife is a medical professional and the de facto family diagnostician, and she has a similarly scientific view of medicine. This is often an enormous comfort, helping us assess and manage situations that are otherwise emotionally overwhelming.

Best of luck through this tough time. Stay surrounded by family, friends, and laughter. They will help you through this more than anything.

As someone who had a scary diagnosis of Non-Hodgkin's Lymphoma just over 5 years ago while in my mid 30s, I see a lot of my situation in your story. I had never had any kind of serious health problem in my life, and was a bit blindsided with a very serious diagnosis.

However, I was much less scared than those around me were. My family expected me to be in a fetal position or something I think, but I never was really that scared. Worried a bit? Yes, but I handled it better than those around me. I think it was actually much harder on them than it was me overall. I knew that I would handle whatever came my way. They worried much more about the scans, the chemo effects, the long term things that would happen. I just wanted to see things from a post-surgery/chemo perspective as fast as possible.

On the other side of all of that, I look at things differently than I did before. It's hard to describe, but some things are more important to me now, and others are much less stressful as in the big picture, they don't really matter much.

Best of luck.

What must be done is out of your hands. Why stress about it? The people who do these things are very talented at what they do.

The only thing you might need worry about is preparations for recovery. I see lots of couch time with your pile. If you don't have a pile, I'm sure the community can help you build one the likes of which dwarfs the mighty Himalayans.

Best wishes for you and your family.

Thank you for sharing this with us, Sean.

I'm a Shone's Syndrome patient myself (mitral stenosis, sub-aortic stenosis, coarctation of the aorta), which is not the same but involves similar effects, and I too had to have open-heart surgery to replace a section of my aorta that was ballooning out with a Dacron graft. I had that done in Boston in 2008.

You're right, it's incredibly disconcerting to realize that you are going to put your trust in a team of people to essentially completely rewire your systems - to stop your body doing the things it does to keep you alive, and replace those functions with machines while they muck around in there. It's scary and unnatural and very, very strange.

But of course, it's also completely awesome. Awesome that we can do this, that things that only a generation ago would have been a death sentence can now be caught early, handled in a half-day surgery, and have you back to more or less normal in less than a month.

My experience of the surgery itself was basically a non-experience, if that's any comfort to you. I was in the pre-op room with my wife, they put me under, and then I was in ICU after the surgery. From my perspective no time elapsed between the two; I was in the one place, I closed my eyes, and then I was in the other. That itself is freaky if you think about it too much, but I certainly prefer it to the alternative of being aware of what was going on.

The recovery process was hard, but made better by good medication and the love and care of family and friends. Conveniently, it's a great excuse to do nothing but kick back and play some videogames for awhile. Two years later at the age of 30, I have nothing but the scar to show for it, everything else is back to normal - if anything, I feel better and healthier than I did before, largely thanks to deciding to take better care of myself so that hopefully I don't have to do anything like this again (not that I could have prevented round 1, but I certainly don't want to cause round 2). I get monitored by my cardiologist every 6 months to a year, and hopefully that's the last I'll have to do procedure-wise for a good long time.

If you have any questions that I might be able to answer, please feel free to ask. Obviously we'll all be pulling for you to have a speedy and comfortable recovery.

Well... sh*t.

Best of luck out there, man! We need the resident cynic. We need him a lot.

Best wishes throughout the whole process. My boss and my mother-in-law both had open heart surgery (for standard clogged-artery stuff) several years back. (Unrelated incidents, honest!) They didn't have any major issues, but both thought the immediate recovery period was a pain in the ass.

Oh, and thanks for the visual imagery like the pizza roll in the microwave.

Best of luck to you. Good thoughts heading your way.

Great piece Sean, vivid and haunting. All my best to you and your family.

This is not a result of bad or good lifestyle choices. This is a result of genes.

What are you doing? Delete this post and sue EB Games, stat!

Best of luck Sean, and strength to you and your family.

Funny place, this internet thing. I don't know you, have never (and with my propensity for hermit-like behavior probably never will) met you but I still find myself sad that you have to go through this. I've had my own relatively insignificant time in the hospital lately and if I can pass along anything it's that I always find reassurance when the doctors know the issue, know the cause and know how to resolve it, if not easily then decisively. I guess it's sort of like finding an issue with a solution in a FAQ somewhere, no matter how much work it takes knowing that there is a definitive answer out there gives me great comfort.

Best of luck to you and your family, you've definitely got my positive thoughts heading your way wherever the hell you are.

Best of luck, man. I hope it all turns out ok.

Best of luck to you and yours, Sean.

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