The delayed ‘Trauma Drama’ of heart disease

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by Carolyn Thomas    @HeartSisters

Summer Ash is a self-professed space cadet. She’s an astrophysicist at Columbia University’s Department of Astronomy in New York City, where she serves as the Director of Outreach.* Five years ago, she underwent open heart surgery after she was diagnosed with an aortic aneurysm (that’s when the tissue of the aorta balloons out dangerously). This condition was likely linked to a congenital heart defect Summer was born with called a bicuspid aortic valve. About 99% of people, she explains, are born with a normal tricuspid aortic valve (meaning three leaflets in the valve), but she was one of the 1% born with only two. With her kind permission, I’m running her story here as it was originally published in 2014 on her blog, Defective Heart Girl Problems.

“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.

summer-ash
      Summer Ash

“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.

“But 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 and 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 godparents’ 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.

“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 to 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.

“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.”

Image credit: Ana Teresa Barboza

Q: Have you, like Summer, had the experience of “sending your emotional brain to the back seat” during a medical crisis?

NOTE FROM CAROLYN: I wrote much more about the link between heart disease and mental health issues in Chapter 5 of my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon. Or if you order it directly from my publisher, Johns Hopkins University Press (JHUP code: HTWN) you will save 20% off the list price when you order).

* Since this post was published, Summer is no longer a New Yorker. She has moved – to a new home and a new job! She’s now the Senior STEAM Education Specialist for the National Radio Astronomy Observatory in Socorro, New Mexico.

See also:

The day I made peace with an errant organ

Six personality coping patterns that influence how you handle heart disease

How we adapt after a heart attack depends on what we believe the diagnosis means

Not just for soldiers anymore: PTSD and heart disease

How a heart attack can trigger PTSD

When a serious diagnosis makes you feel mad as hell

 

53 thoughts on “The delayed ‘Trauma Drama’ of heart disease

  1. This post is very relatable. My heart isn’t supposed to be so loud, but now it is. At first I didn’t want to accept this made me different.

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  2. Wasn’t sure if this went through because it disappeared and asked me to login through WordPress. Sorry if it’s a repeat:

    First of all, I’m a guy, so hopefully I’m not treading where I shouldn’t, but this website came up and Summer’s article spoke so much to some of my feelings. I had CABG x 6 surgery going on 6 years ago. I was 47 years old. I have a family history of coronary artery disease; my dad was 42 and my brother 39 when they had heart attacks. I was 46, so I felt like the “winner” of the family lottery.

    I had my first heart attack the day after Thanksgiving. It had all the classic symptoms for men. Textbook. I knew pretty much what was happening before I ever got to the hospital. After all, I’ve lived with this possibility for 20 or more years after my dad had his heart attack. I’ve been on statins since I was 20 years old. It was always in the back of my mind. It was decided that they wouldn’t do surgery after my heart attack. They changed some of my meds, added others, and sent me home feeling like a ticking time bomb. At that time, I was told that most likely, if I started having issues, I’d have similar symptoms to the classic ones I had just had.

    My body betrayed me. The ONLY indication I had that something was wrong was a slight tightness in my chest that would come and go. I finally decided to have it checked out, and was told that the major artery on each side of my heart were both 95% blocked. I was a fatal heart attack waiting to happen.

    Next thing I knew, I was having surgery within the next 48 hours. I remember waking up on the ventilator when I wasn’t supposed to, and I was trying to use the sign language alphabet to tell them I couldn’t breathe. There was a lot of bustling about, and then they just put me under again. Apparently, my waking up wasn’t anticipated.

    Now, any time that I have a little strange feeling in my chest, I get anxious, which only makes things worse. It just starts spiraling. To make matters worse, I’ve been treated for clinical depression for over a decade and continue to struggle with a low-grade chronic depression even though talk-therapy and drugs have helped quite a bit. I manifests itself in just being in an emotional “funk” for extended periods of time. Not debilitating like it had once been, but just a funk.

    So now I don’t feel like I can trust my body to give me signals. I feel like I’m always on alert, even though maybe I don’t always have to be. And I’m also reaching that age in life when I’m really assessing what I’ve done and where I’m going – you know, the ol’ “mid-life” bugaboo. Parts of me feel like I should seek counseling again, but it was so messy and draining the first time, I don’t know that I have it in me to do it again. Just trying to cope day by day.

    Anyway, thanks, Summer. I know this site is for women and for you to share your stories among yourselves, but I wanted you to know that your story touched me, too. Thanks.

    PS One more thing…Summer was exactly right regarding family members may not be the right people for some of the emotional support. Because heart disease is so common in my family, I kept hearing about how my dad experienced this or my brother went through this, ad nauseum. It did nothing but upset me. I’m not them.

    My experience was my experience, and it felt like no one was listening to what I was feeling. Made me angry. One of my excellent cardiac nurses picked up on this in the hospital, and she had a word with my family, which was helpful. Yes, be careful in whom you confide. It can make a difference.

    Liked by 1 person

    1. Hello Mike – your comment wasn’t a ‘repeat’ (I didn’t get the first one, so thanks for trying again).

      I’m not a physician, but I can tell you generally that there are so many important points you raise that are absolutely common in both men and women. I’m going to include a few links to more info as I respond here.

      Having a heart attack (as cardiac psychologist Dr. Stephen Parker – himself a survivor of several – likes to say) is a “deeply wounding event and it is wound that takes a long time to recover from, whatever the treatment.”

      What you were told after that first heart attack post-Thanksgiving was not correct. We OFTEN hear patients report that the symptoms of their second heart attack were not like those of the first, as you yourself discovered. And that ‘ticking time bomb’ sense is what cardiac researchers call hypervigilance.

      That sense of “betrayal” you mention is also very common. The late Dr. Sherwin Nuland describes our coronary arteries as “friends of the heart when we are healthy, but when they are diseased, they betray it at its most needful moments.”

      I could write a whole book on unhelpful things people say to heart patients! Comparing your experience to those of others seems to be irresistible! (You think YOU have pain? Let me tell you about REAL pain!!) I think it’s terrific that the wise nurse observed that tendency in your own family and intercepted. I wrote more about that here.

      And I agree 100% with Summer and with you that family members are not always the most appropriate people to confide in. Our friends and families want and need us to be “normal” again. It’s very distressing to them to see us not “getting better”, which can lead to them being dismissive or poor listeners. I like to quote the work of Dr. Wayne Sotile who has written about this very topic. But that’s why talk therapy can help – a trained third party who is not a relative!

      If you truly feel that therapy at this time wouldn’t be helpful for you, try to come up with something, anything that you love to do in order to inject some joy into every day. And then do more of it. You pick. You’ve had a lot of traumatic events happen to you. No wonder you are feeling bad. I’ve written tons about depression and heart disease (a history of depression increases our risk of heart disease, and a heart disease diagnosis increases our risk of depression, oh joy!) Just search the CATEGORIES box on the right sidebar here for “mental health issues” for more.

      Good luck to you, Mike…

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  3. Thank you so much for your story, Summer. I had open heart surgery late October 2018, which was preceded by a pacemaker being fitted 4 weeks prior. I had a triple bypass, aortic valve (mechanical) replacement and like you, an aortic aneurysm repair (the vascular surgeon told me it would’ve burst and killed me in the coming months if it hadn’t been discovered and repaired).

    My heart disease was diagnosed quite by accident and then it was all systems go and whilst the physical repair is still happening (OMG the pain!), I am struggling so badly with the mental side of things, and your story, is my story.

    Nobody follows up the mental side of things. Who do you talk to? Neither friends nor family have gone through OHS, doctors don’t understand, nobody does. So thank you, I honestly thought I was the only one, and that I was somehow weak and going mad.
    xoxo

    Liked by 1 person

    1. Hi Davina – I’m so glad that Summer’s story touched a chord for you. You are not alone! I think her story is a good example of how a successful, competent person like her can experience those “cracks” while experiencing mental health issues that may have never shown up before this medical crisis.

      I hope you are able to make an appointment for talk therapy. For Summer, that help was in the form of a psychologist trained in biofeedback for her PTSD symptoms, but it doesn’t have to be only biofeedback. The important thing is to find somebody you can trust to help you gain some perspective, and to learn some tools to help you make sense of something that makes no sense. A therapist doesn’t have to have personally experienced exactly what we have – but the specific training needed to really listen to what we’re going through.

      Our family and friends are often not the most appropriate persons to confide in. They need and want us to be “back to normal”. It can be very distressing for them to know we are still suffering – another reason that a trained third party is so often a more helpful resource. Choose very carefully whom you decide to confide in among family and friends (it may be somebody surprising – e.g. not necessarily somebody in your family or close circle of friends). I wrote more about this in “I Don’t Want to Talk About It. You might also want to check out the links (above, under “See Also”) to articles about living with PTSD after a medical crisis.

      Best of luck to you…

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  4. I relate to this on every level. Mine was brain surgery. I’m still recovering from the PTSD from it as my brain continues to betray me. It’s a very difficult thing to go through. Thank you for sharing your story. 🙏

    Liked by 2 people

    1. Thanks for that perspective Jana. It doesn’t so much matter the specific reason for major surgery, but the emotional, mental, psychological and spiritual impact of a serious diagnosis on one’s life. Researcher Dr. Kathy Charmaz does a lot of work on what she calls “the loss of SELF” in such patients…

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  5. Thank you Summer for your article. It was like reading my own life. Although I didn’t have an aortic surgery, mine was just as emotional. May we speak on the phone cause this texting is aggravating.
    Thank you so much
    Tommie

    Like

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