My AVR Story, CH5: Happily Ever After

Though the nurses warned me there would be good days and bad days, I think I still expected recovery to go fairly smoothly. After the hell I’d been through, surely I deserved it, right?

My trip to the ER after collapsing seems, in retrospect, like a message from my body: this isn’t going to be as easy as you thought. Although that day has been the worst thing that’s happened to me since coming home (so far, anyway), I never expected there to be so many speed bumps along the way The road to recovery, it turns out, is a rocky one indeed. It could use a little paving.

One thing I simply hadn’t considered prior to the operation: my self-esteem. At the time, it didn’t matter enough to even occur to me. Who cared how I looked, as long as I survived? Afterwards, when I woke up with puffy marshmallow feet and tubes sticking out of me like transparent tentacles, I got the feeling I didn’t want to get a real good look at myself. I made a point of closing my eyes when the tubes got pulled and keeping my gaze averted from any mirrors I passed. I never caught my own reflection the entire time I stayed in the hospital.

The first time I saw myself came after my discharge. The mirror in my bathroom covers the better part of one of the walls; it’s pretty much impossible to miss. So one night I sucked it up and took a peek. What I saw was not a pretty picture. I looked gaunt (I realized later I’d lost around ten pounds, possibly more). My eyes were a little glazed and puffy.

The scars hit the hardest. Bigger than I expected, they shone a bright, angry red, impossible to miss on my fair skin. Worst of all, the top of the scar stuck out unnaturally. Nobody had warned me that my sternum would protrude outward after surgery. Thankfully, the protrusion has since gone down completely, and the scars, though still red, are in the process of fading.

Photo (c) Kim Berkley 2015

My chest incision scar (left) and my shoulder scar (right), over six months after surgery.

Given how terrible I felt and how equally terrible I felt I looked, I wanted nothing more than to be left alone to rest and recuperate. Instead, I got assigned a home nurse, a nice but somewhat technologically-challenged older man who would visit upwards of two to three times a week to check my INR (a measurement of how well my anticoagulation medication, coumadin, is working) and my vitals. Though a lovely person at heart, he drove me insane. I didn’t want to chat about how I was doing. I didn’t want to watch him fumble with the equipment over and over again and prick my fingers multiple times just to get a single reading. I just wanted to curl up on the couch and read a good book — except at first my powers of concentration were too poor even for that. I had to settle for binge-watching kid’s shows on Netflix instead.

Finally I grew strong enough for weekly visits to the local lab for my INR tests, and the home nurse no longer needed to see me. I was ecstatic, even if going to the lab did mean having blood drawn all the time. (A few weeks passed before I finally found an appropriate anticoagulation clinic to go to, where they only require finger-prick tests. In the meantime my arms became quite sore and darkly bruised from all the needles jabbing into them.) Then the next speed bump popped up.

My heart started misbehaving again. It seemed to skip beats, then make up for it with a double beat. It felt extremely uncomfortable — not painful, exactly, but unnatural and startling, a sort of heart-hiccup. At first it lasted only moments at a time, but one day it happened continuously for a full 12 hours, at least, at which point we called the doctor. My cardiologist’s nurse hooked me up to a heart monitor for a week to see what was going on. She explained that after major heart surgery it’s common to have some irregularities. I probably had nothing to worry about, though there was a slight chance it could turn into atrial fibrillation — a whole new problem I did not want to have to deal with.

Fortunately, the moment they attached the monitor, my heart stopped acting up. (A real practical joker, that one.) It made me look a teensy bit hypochondriacal, but I didn’t mind too much. I was just happy it had decided to start behaving like a proper heart again, albeit a ticking one.

The ticking isn’t as bad as you’d think.It’s strange how capable humans are of becoming used to weird things. Though the sound is more noticeable than I originally hoped and can be frustrating at times, it doesn’t bother me as much as I thought it might. In fact, in some ways it’s convenient. I’ve never been good at taking my own pulse, but now all I have to do is stop and listen.

Photo (c) Kim Berkley 2015Initially I did feel a little self-conscious about it. Everyone at the hospital said they could hear it, and more than once I’ve had to explain that no, that noise isn’t a fancy watch, it’s just my steampunk heart. But at the end of the day it just makes me a little extra unusual, and that’s not so bad.

After the arrythmia, the next scare came one tired night when I accidentally took a double dose of my anticoagulants. Somehow I’d confused my late-night medications with the next day’s dose of warfarin, and it wasn’t until an hour later that my mom and I figured out what I’d done. She called the doctor’s office immediately, while I freaked out. The warning on the medication clearly said that if an overdose occurred, the patient should call a poison control center and go to the ER right away. I didn’t want to see the ER ever again, and I definitely didn’t want to have to go because my stupid mistake caused what the pamphlets call “a bleeding event.”

To my surprise and overwhelming relief, I did not have to go to the ER. (Nor did I experience any unusual bleeding.) The doctor instructed that I should be extra careful not to bruise or cut myself for a few days, and go to the clinic as soon as possible for an INR test. The next day, the results of the test showed my INR was a little high, but not as bad as we feared, and before long it went back down again.

Unfortunately, it had a tendency to go down a little too far back then. Because of my particular valve choice, my target INR range is lower and smaller than most peoples’, which means I need to be more careful than most to keep it level. At first, however, your body requires time to adjust to — well, everything — and during this period INR levels tend to roller-coaster up and down. It can take months before things balance out.

Keeping track of your diet, when previously you didn’t have to care about it much at all, is a big adjustment. So is keeping said diet consistent so that you eat the same amount of Vitamin K every single day. Watching your INR results consistently fall out of range (especially when you’re trying so hard to get it right) is draining, to say the least. Six months have already come and gone, and yet it is only very recently that I finally began to stabilize. This week’s INR reading was a fabulous 2.4, and for the first time since starting coumadin I won’t have to go to the clinic for four whole weeks. Progress at last!

Coumadin, though by far the most touchy of my meds, isn’t the only drug that has required multiple dosage tweaks. To keep my heart rate steady, I was also prescribed metoprolol — a pill which happens to also lower blood pressure. I imagine for many people this would be an unexpected blessing, but I happen to have regular-to-low BP to begin with. The result? Many a BP reading falling around the 90/60 area (sometimes even lower), along with a not-so-healthy dose of fatigue and brain fog. Changing positions too fast, especially when getting out of bed in the morning, made me lightheaded, and concentration sometimes came only with great effort. While this did get better over time, the improvement was minimal at best. After a few months these side effects began to wear on me.

Photo (c) Kim Berkley 2015My cardiologist’s solution: prescribing a different type of the same drug. The version I was taking at the time was short-release, meaning I had to take one at night and one in the morning to keep it in my system. The version she switched me to was slow-release. Instead of setting my alarm every morning to take the first half of my dose on time, I would be taking a single pill every night before bed. The new pill, she explained, would release a much steadier amount of the medication into my system and therefore hopefully reduce the fatigue factor.

It worked. Not only did the medicine itself make me less tired, the fact that I didn’t have to set my alarm every single damn day (even the weekends!) meant I was free to get as much sleep as my body needed, even if I’d had a restless night or gone to bed just a little too late. Some days still played out better than others, but it was a marked improvement. Even better, during this week’s consultation my cardiologist cut the dose in half, which should mean even more energy for me, while still having enough of the drug in my system to protect my heart.

Despite all the (relatively minor) setbacks, this has been the easiest part of the experience for me, for one simple reason: I am getting better all the time. I may have my bad days, but I am so much stronger than I used to be.

My heart may be more physically fragile, but there are things I’ve taken away from all of this that make it all a little more bearable. I learned all the obvious things — that life is precious and fleeting, and the future is incredibly uncertain, despite all the best laid plans of mice and men — but also that people can be so much more fantastic than they realize. It is not our limits that define us, but the lives we carve out in spite of them that makes us who we are.

“Look at these people, these human beings. Consider their potential! From the day they arrive on the planet, blinking, step into the sun, there is more to see than can ever be seen, more to do than– no, hold on, sorry, that’s The Lion King. But the point still stands!” (Doctor Who, “The Christmas Invasion.”)

Elizabeth Gilbert once wrote that “ruin is a gift,” and I admit that at first I didn’t get it. I do now. What we often perceive as ruin can be a chance at rebirth and a new outlook on life. Tragedy may be an opportunity to show our best selves, to prove that we are better than our circumstances. We are capable of surviving so much more than we think we can.

But we can’t do it alone. To anyone reading this in need of a little support: it’s out there if you reach for it. Friends, family, support groups, online forums, helplines — whatever floats your boat, go for it, because the fact is if you try to navigate treacherous waters alone, you’re bound to hit the rocks (or a sea monster) sooner or later.

After coming back home it took me a long time to get back out and start seeing people again — and that’s all right. I needed time to myself, and I took it. The important thing is that I did, eventually, come back to everyone (thanks, in no small part, to some much-needed pushing from someone who has since become one of the most important people in my life). I learned not to be so self-conscious about my heart and my scars, something I could not have done alone at home, staring at my reflection and wondering when I’d look and feel normal again. I even learned to laugh about it.

In fact, the title of this blog comes from a joke made by one of my best friends. She shared all sorts of ridiculous puns and riddles with me about the whole thing from the beginning, knowing, after more than ten years of friendship, how far she could push it without crossing any lines. One day, she called me out of nowhere, giggling, and said, “Guess what? You’ve got a ticker… in your ticker!For some reason, at the time this struck me as the most unimaginably hilarious thing said by anyone, anywhere, ever. I laughed harder than I had since I’d first been diagnosed. I realized then just how grateful I was to have someone like her around to keep me from taking myself too seriously. No matter the circumstances, laughter is still the best medicine of all.

But most of all, to quote A.A. Milne,

“Promise me you’ll always remember: you’re braver than you believe, stronger than you seem, and smarter than you think.” (Winnie the Pooh)

If you’re going through hell, keep going, and remind yourself as often as necessary of this one simple truth: you’ve got this.

This is the last 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, CH5: Happily Ever After

  1. Pingback: One Year Anniversary |

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

  3. Pingback: My AVR Story, CH1: Once Upon a Diagnosis | Tick Tock Ticker

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


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