Heart Wars Trilogy Part 2: Trauma Drama

I think there is a big misconception about how fast “young people” heal from a surgery like this. There’s healing and then there’s HEALING. On one hand, being young and strong and in good health (with one obvious exception) means I can physically heal faster than the average open heart surgery patient. On the other hand, the average open heart surgery patient is much older and often in poorer health – so much so that doctors often find a less invasive way to operate on the heart; a partial-sternotomy, a thoracotomy in between the ribs, or even going in through the femoral artery, all of which are less invasive than a full sternotomy.

My surgeon said that since I was in such good shape, he would just go the direct route. My body could clearly take it. I would “bounce back.”

Lucky me.

Turns out growing new bone between my sternum wires, reconnecting my muscles and nerves across my chest, and regaining my strength was the easy part. It’s at least straightforward. There’s a checklist of things to do: sit up, stand up, walk, walk again, and walk some more. Keep walking. It may not be linear (it most definitely was not), but at least there’s a path laid out for you. Millions of people have healed from this before. Six weeks after leaving the hospital, my surgeon declared me fixed and told me to go live my life. Almost two years later, I’m struggling to do just that.

My surgery was on the books and over with well before my mind even accepted it was happening. I focused all my energy on understanding what would happen to me physically that I didn’t stop to consider what might happen to me emotionally. Sure I had the occasional breakdown while recovering, but it almost always stemmed from pain and fatigue and frustration. It wasn’t until six months later that the first cracks began to show while I was organizing my medical bills in preparation for filing my taxes. I had a massive envelope full of receipts and I was entering them into a spreadsheet, all out of order. The second after I typed the entry “taxi to hospital” for the morning of my surgery, I completely broke down. It was as if all the fear since I found out about my aneurysm had been filed away in a corner somewhere and I had just stumbled upon it. This happened a few more times and then it ended as suddenly as it began and I thought nothing more of it.

A year later, it all resurfaced, only this time it came in waves, each one bigger than the one before. I started to have visceral reactions to things that reminded me of surgery, both directly and indirectly. I felt other people’s pain as if it were my own. When once I had no trouble watching medical dramas, I now actively turned away from scenes in the OR. I had to skip over the news items in my Facebook feed from the two heart surgery groups I was a member of. I started avoiding my godparent’s neighborhood on the Upper East Side where I stayed during my recovery. Every time I crossed Park Avenue, I would have a flashback to when I couldn’t make it across the intersection in one cycle of the light. Riding in a taxi only made me remember how vulnerable I felt being in a car after surgery. If I saw anyone in the subway walking with a cane, I would immediately remember how terrified I was of being jostled when I started commuting on my own again. I started feeling the need to adopt a defensive posture and protect my chest again. The city became a minefield. My mind became a minefield. It was so bad at one point, even seeing the shape of a heart (anatomical or symbolic) would trigger me.

And my bionic heartbeat morphed into the worst trigger of all: one that I couldn’t escape. It went wherever I went. It was inside of me.

Something had to be done.

Nicklas Gustafsson

As I mentioned in Part 1, there is nothing medically wrong with my heart so no procedure or prescription could do anything about the pounding in my chest. As an alternative, my GP suggested clinical hypnosis or biofeedback as a way to try and transform it into more of a background sensation. I had heard of biofeedback before and it piqued my scientific interest so I decided to explore that option first. That’s how I found Dr. Leah Lagos, a psychologist trained in biofeedback, who I’ve been working with since mid-March (more on her and the process of biofeedback in Part 3).

Through working with Dr. Lagos, I’ve come to realize two things:

1) All the of emotional and visceral reactions I mentioned above are actually symptoms of post-traumatic stress disorder (PTSD).

I approached my surgery as a logical, medical necessity and focused all my energy on planning the practical steps for my recovery. I spared little or no energy for what I thought about needing to have my most vital organ repaired. My rational brain took the wheel and relegated my emotional brain to the back seat. As a result, my body, and my heart, actually experienced my surgery as trauma. Which makes a lot of sense when you think about what my body actually went through: my torso was sliced open, my sternum sawed in half, my ribs forcibly spread apart, and my heart was stopped. Yes, all these things saved my life. My rational brain knows that and accepts it. But ever since I woke up in the ICU in tremendous pain, my emotional brain (via my heart and my body) has been screaming “WTF?!”.  Which ties into #2…

2) I’m fucking pissed at my heart for letting this happen to me.

At first I thought my bionic heartbeat bothered me so much because it felt like something must still be wrong. Why else would it be so loud and so forceful? Surely it must be trying to tell me something. But it’s not fear it triggers, it’s anger. Really raw anger.

When something starts going wrong in your body, you usually get some kind of clue: a twinge, a pain, a change. Something that hints at a difference. Something that tells you things aren’t quite right. Something that makes you think twice. Nothing like that occurred here. Nothing at all. My aorta was expanding and stretching to its limits and my body never said a word.

My heart, the organ that gives me life on a moment to moment basis, lied to me. It violated my trust. When it was in grave danger it sat in silence. Now it’s perfectly healthy and it won’t shut up. I don’t know what to believe anymore. I’ve lost all physical confidence in my body.

So that’s where things stand at the moment. The biofeedback is helping me make great strides on both these fronts, but it’s an ongoing process. One you’ll learn more about in Part 3.










  1. Adrienne Ash

    Wow, really we’ll done–again: a streaming saga. All the pieces are assembled (hope there are no more to be discovered), everything’s been dragged into the daylight and being inspected, dressed down/scolded and warned that in the future changes will be made. No more rogues in this corporeal system.

    Love, Mom

    Sent from my iPhone AA


  2. Ruth

    A lot of what you’re writing here really resonates for me, but I want to focus on this (this is also a comment on the interlude you just posted):

    “My heart, the organ that gives me life on a moment to moment basis, lied to me. It violated my trust. When it was in grave danger it sat in silence. Now it’s perfectly healthy and it won’t shut up. I don’t know what to believe anymore. I’ve lost all physical confidence in my body.”

    While I have not had an experience on the scale of yours, I have some inkling of what this is like and what the PTSD related to this sort of experience is like. I should warn you that this is potentially triggering (it relates to eye issues), so it is for sure okay not to read it. The bottom line is, asymptomatic serious health issues BLOW. For exactly the reasons you describe.

    Here’s my story:

    Just over five years ago, prior to a major geographic move, I went for a routine eye exam. I’ve been nearsighted since I was a little kid (when I was six, I thought “galloping myopia” was amazingly cool, because horses) and have always loved going to the ophthalmologist. Well, on that day (it was the Friday of Memorial Day weekend), I went for a checkup and to get a referral to a doc in my soon to be new city. The doc dilated my pupils, did the exam, and said, “Hmmm. I want the retina guy to take a look.” Fortunately I was in a top eye hospital with a retina service, and I waited a little while and then retina guy took a look and said, “Hmmm.” Long story short, I had a partial retinal detachment, and there and then I had to decide which treatment to have. It had to be done immediately because I was asymptomatic and they wanted to keep it that way. There was a real sense of urgency and the potential for escalation from no symptoms to blindness was made very vivid in a kind of calm, hey-but-we’ll-take-care-of-it way. Retina guy was awesome, with a great chairside manner. Mind you, because my pupils were freaking dilated, I couldn’t read, and I couldn’t read phone numbers or the directory in my phone (this was pre iPhone), and I was alone, and this was my eyes we were talking about. Anyway, based on the doc’s rec I had the least invasive repair and was sent home. I kept my cool throughout. I even found it kind of interesting. I was acutely aware that but for the fact that I was about to move, I never would have gotten this appointment, so I actually considered myself sort of lucky that things shook out the way they did.

    The next week, I drove to my soon-to-be-new city and rented an apartment.

    Ten days after the original repair, I went for my second followup and retina doc dilated my pupil, looked at my retina, and said, “Hmmmm.” He didn’t like how it was healing and said I had to have a second more invasive procedure with a frankly horrible recuperation process. I had about a two-hour wait until he could do it and still, I totally kept my cool. I did somehow manage to email a close friend (who happens to be a surgeon, so I knew she wouldn’t freak) and just say “please call me” — and when she called and I told her, she reacted exactly the way I needed her to (“Oh, fuck.”). Anyway, I had the procedure, I went home. It was very not fun. Either the next day or the day after, the first time I removed the bandage, my eye looked like a horror film. No one had warned me what it would look like and it was so awful that I decided to go back to the eye hospital. My doc wasn’t on call so I saw the other retina doc. His chairside manner sucked. He acted like I was nuts to have even come in, to have even been concerned. He was generally dismissive of me. And when he walked out, I totally burst into tears for the first time in this whole thing. And I could not stop. The awesome PA who had been with me through the whole series of surgeries actually came over to hug me.

    Anyway. I am very thankful that I am clinically okay now. I am very lucky that Awesome Retina Doc was on call the day my eye doc said, “hmmm” and that the second procedure worked. And I go for my retina checkup every year and grow increasingly nuts in the two weeks ahead of the appointment and sit there in a panic until I get the all clear. We trust our bodies to tell us when something is wrong and not to attack us. We don’t expect routine medical appointments to turn into emergency surgery, not once, but twice.

    This is not on the scale of what you went through or are going through, Summer. But a lot of what you describe puts me in mind of my eye saga and how I experienced it and how it has changed me. In an odd way the thing that makes me most angry is I used to love going to the eye doctor and now it’s more stressful than a mammogram.

    I apologize for this long rambling.


  3. Andrea

    Thanks for sharing so eloquently about how physical health experiences also impact mental health and emotional well-being!

    I work at Quartet, a healthcare technology company that partners with primary care and behavioral health providers to ensure patients receive the care they need to get better. We’re launching a Patient Advisory Committee, which will be made up of individuals who are open to sharing their experiences with both physical and mental health conditions. It’s a great opportunity to be immersed in a group of like-minded people who are passionate about eliminating stigma around mental health and improving the integration of mental healthcare with physical healthcare. Here is the link to learn more and apply: http://www.quartethealth.com/patients.

    If you’re interested, we’d love it if you applied! Feel free to reach out to pac@quartethealth.com with any questions.

  4. Lauren

    I have arrived here via Carolyn Thomas’ blog and I felt such deja vu reading this column. I had a ‘perfect’ heart at 50 and celebrated my 50th year by cycling across Canada. I struggled with asthma during the trip, but when I came home realized it was not asthma, but my heart. They discovered an aortic aneurysm when treating several arrhythmia issues and I had the “full treatment” open heart for repair in 2011 with a follow up surgery next day for complications and in 2014 I had a pacemaker implanted. The explanation was also genetic defects.
    Your description of the emotional and mental fall out was like reading my own story, right down to the defensive posture. It has been over 5 yrs, but the struggle is still happening, aggravated no doubt by a further diagnosis of coronary microvascular endothelial dysfunction. I am still stopped in my tracks a couple of times a week by flashbacks. I live in a small remote community with no opportunity for any post op cardiac rehabilitation, either physical or mental. How wonderful that you have access to therapy of many kinds and that you were wise enough to take advantage of it.
    PS And thanks for the blog that explained why my scar is so much bigger than others I have seen!

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