My AVR Story, CH1: Once Upon a Diagnosis

I remember the exact moment I realized I needed heart surgery. After being sent to my cardiologist for an echocardiogram, I’d waited with bated breath for my test results. What I actually expected to see, I have no idea. At the time I was convinced my problems were mental in origin, that I was developing some sort of anxiety disorder — it would certainly have explained the panic attack-like symptoms I’d begun experiencing, including breathlessness and an increasing tightness in my chest like an invisible corset, the strings of which were being pulled tighter all the time.

Having not seen a doctor of any kind in some years, my first appointment with my new GP took place on November 21st, 2014, just hours after waking up to the news that a good friend of mine had passed away. Needless to say I was not in a particularly good state of mind. Things didn’t get better when, while pressing his stethoscope to my chest, my doctor remarked that he could hear my heart making a peculiar noise. He moved the stethoscope to my back, and remarked, in an intrigued tone that would just have easily suggested he’d unexpectedly found some change on the ground, or perhaps learned a new bit of vaguely interesting gossip, “That’s strange. I’ve never heard that before!” Apparently he had never treated a patient with a bicuspid aortic valve (BAV) before. He found it much more interesting than I did.

Given that I should have been keeping tabs on my condition over the years (but hadn’t), he sent me to a cardiologist, just to make sure there wasn’t any funny business going on.

And so I found myself checking my online medical profile one cold, dark November evening for the results of my echo, only to see clinical and foreign-sounding words like “severe aortic regurgitation” and “ascending aorta is moderately to severely dilated” staring back at me with cold indifference, along with a note from my GP that the cardiologist seemed “concerned” about my results and wanted to make sure I kept my follow-up appointment.

Photo (c) Kim Berkley 2015

I then did what 99.9% of the human population with a reliable internet connection would do: I went to Google. A few moments later, I ran crying hysterically to my parents that I was dying and was going to have to have open-heart surgery. They then did what 99.9% of the population of this world’s good parents would do and tried to comfort me, assuring me that I was probably overreacting and would not really understand my test results until the cardiologist explained them.

They were wrong; I was right. When I saw my cardiologist again, she told my mother, with big blue Disney princess eyes wide with worry (and a voice uncannily like Amy Adams’s), that if I was her daughter, she’d take me to the emergency room right away, because the damage in my heart could be so severe that I might need surgery that day. She hugged us both on the way out, a gesture which she meant to be comforting but, for me at least, had the exact opposite effect. I thought, “She’s afraid she won’t see me again. She’s afraid I’m going to die.” In retrospect she was probably just imagining how difficult and scary an emergency surgery would be for everyone involved, but at the time I was frightened out of my mind and convinced I was about to meet my maker.

The first thing I saw when my family and I walked into the ER was an elderly man standing in a pool of his own blood, coughing up more of it into his hand and down his shirt as his wife spoke in hurried, hushed tones to the nurse behind the check-in counter. I’ve never been hemophobic, but at that particular moment that scene was almost too much for me. I got dizzy, lightheaded, even a little nauseous, and all the while I kept thinking about my heart, trying not to panic for fear that the stress would cause heart failure and kill me then and there — which of course only made me freak out even more.

Eventually the man left the lobby, the blood was cleaned up, and I was admitted to my own private little corner of the ER. A sweet nurse who reminded me of a travel-sized version of Audrey (from Little Shop of Horrors) kept tabs on me for the next six hours while a pantheon of doctors marched in and out of the room, asking me many of the same questions — “Where does it hurt?” “On a scale of 1-10, how is your pain level?” “Can you please confirm your date of birth?” — over and over again, until I began to question my own sanity, wondering if I’d somehow been answering them wrong. (I did very nearly get my own birthday wrong at one point; that’s how flustered I got.)

Finally, a man came in and, having introduced himself as my new surgeon, told me that I would not, in fact, be needing surgery that day, though it would definitely be necessary within the next few weeks. My malfunctioning BAV had taken a heavy toll on my heart, causing severe strain and damage to the aorta (which had stretched to an alarming 4.86cm; normally it should only be around 2cm or so wide) as well as mild damage to the aortic root. He explained my choices regarding the different replacement valves I could get, including organic valves, mechanical valves, and a new process called the Ross Procedure.

At first I thought I wanted the Ross — using all-human components sounded like the best option, not to mention the procedure promised at least a chance at never needing surgery again — but after further evaluation the surgeon told me I was not the best candidate for the procedure, due to the fact that my damaged aortic root would make an already complicated procedure that much more difficult, and therefore dangerous, to perform. He simply felt it was too much of a risk, and after it had been explained to me I couldn’t help but agree.

In the end I chose an On-X mechanical valve. Despite the fact it would mean taking anticoagulants for the rest of my life (and so many side effects besides that which I was not fully aware of at the time), it had been made clear to me that an organic valve would only last so long, especially in so young a patient — five, maybe ten years, most likely. I was horrified enough at having to go through one major surgery; the thought of inevitably undergoing yet another one down the road was downright unacceptable to me.

Let’s be clear here: I was not happy about my choices. A journal entry from early December reads,

“. . . The good news is the valve will probably last longer than I will; there’s a decent chance I might never need heart surgery again. But I’ll be limited . . . I know it could be worse. It could be cancer, the incurable, insufferable kind. It could be AIDs (unlikely as that would be). I could lose someone I love (again). This is a banner f***ing year, so any of those would just figure. I know it could be worse. But that doesn’t make it any better.

. . . I want to be strong. I want to be brave. I know those things are not physical, and a tiny piece of me is ready to prove that I am those things in spirit, at least. But I want to be strong physically too, or at least no more vulnerable than the average person. Taking blood thinners, being limited, having to take extra precautions, makes me vulnerable . . . I hate it. I hate it more than I have the patience to find the words to say.”

At the same time, however, deep down I was infinitely grateful to be given a chance to live at all, limitations notwithstanding. I know it’s a cliche but I truly never realized, until I was faced with the fact of my own mortality, just how much I wanted to live. The thing is, heart valve surgery has only relatively recently become a successful procedure, and functioning mechanical valves are, in the grand scheme of things, a pretty new invention. If I had been born in the wrong decade, not all that many decades ago, I wouldn’t have had any options at all. I would have lived to the ripe old age of twenty-four and then, after several increasingly frightening months of breathlessness, fatigue and chest pains, dropped dead of heart failure.

But I wasn’t, so I didn’t, and here I am today.

This is the first post in a five-part series about my experience with aortic valve replacement surgery. Links to the rest of the posts in the series are listed below.

4 thoughts on “My AVR Story, CH1: Once Upon a Diagnosis

  1. Pingback: False Alarms: Lessons in Patience and Positive Thinking – Tick Tock Ticker

  2. Pingback: My AVR Story, CH3: Surviving Surgery | Tick Tock Ticker

  3. Pingback: My AVR Story, CH5: Happily Ever After | Tick Tock Ticker

  4. Pingback: My AVR Story, CH2: Pre-Op Interlude | Tick Tock Ticker


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