The delayed ‘Trauma Drama’ of heart disease

26 Feb

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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?

See also:

 

 

24 Responses to “The delayed ‘Trauma Drama’ of heart disease”

  1. Alicia Butcher Ehrhardt March 14, 2017 at 2:42 pm #

    As I read Summer’s story, within a paragraph or two my brain said ‘PTSD’! How could she not have it with all that happened? And doing a major operation, when the surgeons could have been cautious and careful, seems to me the height of, if not malpractice, then total disregard for the patient.

    My husband had a quadruple bypass in 1998, and has since had three stents, so he was the ‘cardiac patient.’ He’s NEVER had a side effect from a medication (that he would admit). Instead, he sets up experiments with the cardiologist after he reads papers, the cardiologist lets him try different drugs or combinations, and then they evaluate the results together!

    Nobody told me depression is a common occurrence after the three stents I just got – in a very badly-managed two-week ordeal. I’m certainly not in Summer’s class – but I’m also much older and have had CFS since 1989, and the whole ER experience was highly traumatic, and complicated by reactions to every drug (I warned them – they didn’t listen).

    It’s just too much to handle. I don’t tolerate antidepressants, and don’t have the energy to ‘go talk to someone,’ so I’m handling it with CBT (good at that after all these years). I hope the cardiac rehab I’ve agreed to (and will control with an iron fist so as not to exceed my CFS guidelines) plus the better blood flow will actually end up with me in a better place. I dumped the first place after talking to the guy in charge (drill sargeant) on the phone. The biggest hospital, etc., problem? CONSTANT new people ordering me around, thrusting drugs at me, and expecting me to fall in with their plans (different for each nurse). And then telling me I had to make the choice – and having me sign ‘informed consent’ forms. What a lie.

    I’ll get there – grateful to be alive – as soon as I can. I hope to find more stories on this blog to help me process.

    Like

    • Carolyn Thomas March 14, 2017 at 6:37 pm #

      Alicia, it can for sure feel like “too much to handle”. I’m glad to know that you’ve been referred to cardiac rehab, which has been shown in study after study to reduce mortality rates by up to 30% (that’s right up there with statins!) If you can go into that program with a willingness to trust the process, you too will find significant benefit. If you go in with your dukes up ready to interpret instructions as “ordering you around” – well, then you can’t expect much success, frankly. They’re not ordering you around, they are helping heart patients who are afraid to move start moving a little bit. We know that sustained anger and hostility (especially directed at the people who are the ones trying to help) can ultimately negatively affect outcomes for heart patients. Try to lighten up when you walk into your first few rehab classes. Protect your own physical capabilities, of course, but please be willing to be curious, not furious…

      Like

      • Alicia Butcher Ehrhardt March 14, 2017 at 8:14 pm #

        As you say, you know your disease far better than most people you will run into in the medical profession, even in cardiology. It matter to you. I don’t know what your limitations are as far as rehab and exercise, but you do – and they may not. Not well enough not to harm you. I think you are your own best advocate – and even you are pushing boulders up hill.

        I have 27 years of doctors not handling the CFS properly. I spent time on the phone with the people in charge of both rehab programs I am considering. Neither place had anyone with any knowledge, or prior patient they could refer me to for a reference.

        The second was more maleable, by far, than the first, so that’s where I’m going. It may be just as bad in practice – I could not get a straight answer to the question, “Will I be able to SEE my heart rate as I’m exercising?” until I had asked it eight times, and finally got the answer, “No.” And they don’t maintain their bicycles, so that is not reliable – on the only machines they have with a HR display.

        When I tell them that I will crash if they try to raise my heart rate into the aerobic region, because my body can’t produce energy aerobically, they don’t get it. I can’t educate every single PT person in the programs, but I can insist on knowing my HR (I’m taking my chest strap monitor, and their electrodes will have to work around that), and making sure I don’t go over my limit (93-95 BPM).

        Then I can work for longer periods each time, starting at a few minutes with huge rests in between. I have the papers for them that explain how and why. They wouldn’t let me send them ahead.

        I have huge dread – and will have to just do my rehab at home if they can’t work with me. But don’t blame the patient when the PT people won’t listen. We’re cleaning the basement (my assistant is, not me personally) so there is room to use the machines we have down there, and I can use the Nordic track sitting, and the rowing bits and weights on the other machines.

        I’d rather do it at the rehab place – in the same building with the ER – but I’ll do it my way rather than not at all if I can’t make them listen.

        I know I sound nuts – and I apologize for monopolizing your blog comments – but I’ve done nothing BUT think about how to do the rehab properly. Maybe it will even help with the zombie and zero energy side effects.

        Thanks for your patience. Nobody else listens very well, and with your depth of knowledge. I’m sure I’ll be less needy soon. Newbies are so needy!

        Like

        • Carolyn Thomas March 15, 2017 at 8:05 am #

          I think you might find the online support community at WomenHeart more useful than my blog, Alicia. First of all, they have over 28,000 members in that group, all with heart disease. That’s 28,000 potential listeners. It’s free to join, and “open” 24/7. There’s even a “journal” option in which newbies can write as much as they need to, and a “discussion” option for those who just have a specific question they want to run by other women. This site was a lifesaver for me in the early weeks and months, post-MI.

          By comparison, here at Heart Sisters, I’m only one person (and a heart attack survivor also living with the debilitating symptoms of coronary microvascular disease every day) so keeping track of/responding to comments here is harder for me than it would be for the very large group of women members at WomenHeart. Check it out and see what you think…

          Like

          • Alicia Butcher Ehrhardt March 15, 2017 at 8:36 am #

            Thank you so much! I was worried I’m basically whining about stuff as a new patient which I should be addressing elsewhere – and I realize there’s only one of you. I’ve been curtailing many of my comments (probably nothing new in them) for that reason. There is a difference between commenting on a subject and monopolizing – I’ve dealt with it once or twice on my own blog, and that’s a writer’s blog, fairly uninteresting to most people.

            Many thanks for the link.

            Looking forward to your posts in my feed.

            Like

  2. Mag Affleck February 27, 2017 at 3:48 am #

    As a 15 year old I was left alone in hospital before and after open heart surgery, visiting was strictly every 2 days during the week and Saturday and Sunday for 1 hour at a time, not like it is today, especially for children, and no one was allowed to see me for 2 days after my op.

    I’ve had heart attacks which resulted in cardiac arrests since and a stroke and without a pacemaker fitted, I wouldn’t be here. The worst anxiety I suffered was going home after the heart attacks, feeling very afraid in case it would happen again. I’ve suffered from “panic attacks” most of my life, but no one that I have come across is the least bit interested. I also developed a phobia about going into hospital when I was young, but again no one cared.

    As a result I now feel totally alone when I have to have something done, like when I need tests done or a new pacemaker fitted. I say in the past the worst anxiety was after my heart attacks, but I am having tests for heart failure and have in the past week had THE worst anxiety I have ever known. After about 6 months of waiting for results of tests and appointments for more tests, I think it all gets too much and something has got to give. I feel that the mental health of patients who have been through the trauma of heart related illness is largely forgotten but needs to be seriously considered.

    Liked by 1 person

    • Carolyn Thomas February 27, 2017 at 6:01 am #

      Thanks for sharing your unique perspective here, Mag. Those hospital visiting hour schedules sound positively barbaric now, don’t they?! You are so right: the mental health of heart patients does need to be seriously considered. But patients are often the least able to advocate for such consideration during stressful, frightening medical procedures. This sea change in attitude towards supporting a mind-body connection needs to start with care providers and hospital administrators who are the ones who can actually lobby for providing mental health professionals, cardiac social workers, peer support groups and other resources to address that connection. Read more about PTSD in heart patients, and please make an appointment to talk to a counselor, your pastor or a therapist.

      Like

  3. Racing Heart Beat February 27, 2017 at 12:33 am #

    I had unexpected lifesaving heart surgery at the age of 48.

    Within 6 weeks of my surgery, my mother died (she had terminal cancer and dementia), then when I returned to work, only a few months later, my job contract ended.

    Strike 3 and I was out.

    People tell me how well I look now. Outwardly yes, but inside I am struggling. Every single day. Nobody sees that.

    Please read my blog. I’ve included a few posts about the mental aspects of preparing and recovering from heart surgery.

    Liked by 2 people

    • Carolyn Thomas February 27, 2017 at 5:36 am #

      Strike 3 is one way of describing those three significant and traumatic events, all so close together, but the analogy is limiting (because even when a batter strikes out in baseball, another time at bat is always ahead as the game continues). I spent many years working in hospice palliative care, and your experience reminds me of what we called “complicated grief“. You are not alone. It’s very common to feel “stuck” after multiple losses like yours. When you’re struggling every day, it’s time to seek professional counseling to help yourself. Best of luck to you.

      Like

  4. Marie February 26, 2017 at 7:03 pm #

    My brain will apologize to my body from time to time. It wasn’t my body’s choice to be born defective, but my brain signed the surgery contract and made the decision. And then it was anaesthetized and safely out of contact with what happened. My body, unbeknownst to my brain, bore the full brunt of its decision. My brain tells my arms to hug my body, while it apologizes. It might sound weird, but I’ve found myself less anxious. Healing hugs to all.

    Liked by 1 person

    • Carolyn Thomas February 27, 2017 at 5:16 am #

      Marie, what a poetic and creative way to view this pervasive conflict between mind and body. Love those healing hugs… Thanks for this!

      Like

  5. Ree Laughlin February 26, 2017 at 10:26 am #

    The mind/body connection is real and most of us forget that while we are in the throes of recovery from open heart surgery.

    I was on a heart-lung machine for 3 1/2 hours while the medical team worked on replacing my aortic valve, then piecing everything that had been separated in my chest back together. For those 3 1/2 hours my brain thought I was dead, as a psychiatrist (who I finally agreed to consult) told me.

    When I came out of the anesthesia my brain said, “WTH, I thought you were dead?” What happened? The psychotic events came along with the physical recovery: confusion, delusion, panic attacks, disorientation. For many women, these reactions are part of the recovery process that we are not warned about. These occurrences pile on top of the pain, physical weakness and strong drugs our body had never experienced.

    My astute cardiologist told my husband to get me into therapy because the meltdowns were not good for my recovery. I went for a few sessions and once I understood what was going on, the anxiety dissipated. This June, it will be seven years since my surgery. I have many heart sisters locally and around the country. It’s a good feeling to know you are not alone!

    Besides my family and friends, excellent medical/mental care and cardio rehab, WomenHeart: The National Coalition of Women with Heart Disease played a major role in my successful recovery.

    Liked by 1 person

    • Carolyn Thomas February 26, 2017 at 1:47 pm #

      Astute comments, Ree! Whenever I hear of a patient saying “we were not warned about…” _____ (fill in the blank, anything like the responses you and many other heart patients commonly experience, I wonder why your “astute” cardiologist hadn’t warned you of this common reaction BEFORE you went into the O.R.? As you say, once you can finally get your brain wrapped around what’s going on, the anxiety can dissipate as that mind-body connection catches up, especially once you realize that you are not alone.

      I too found that the WomenHeart online patient community was a daily lifesaver for me in the early weeks and months (currently at almost 28,000 members from all over the world!)

      Like

  6. Jenn February 26, 2017 at 9:23 am #

    “Sending my emotional brain to the back seat” is exactly what I do, only I call it intellectualizing the situation.

    Having gone back to school for a new career, I handed in my last paper for my degree in nursing on the 15th of April, had my gallbladder out (in hospital one night), and started my first job as an RN on May 9. I figured that my exhaustion and difficulty feeling like I was part of the group was due to the learning curve and age difference. Other new nurses were young enough to be my children. Nurses my age were old hands and knew one another well. Uh, hello? Maybe I should have taken 4-6 weeks after the surgery and I would have been relaxed and ready to start the job and be sociable, instead of physically struggling myself as well as learning a new job in which I had to keep patients safe and support them when I needed support.

    When I had my mitral valve replaced with open heart surgery, I had been sick at home as an “urgent outpatient ” for 15 months. I was married, in my 40s and my mother came from across the country to help. She, in her 70s, was very worried about me, although I was very matter-of-fact about the whole business. There were complications with my recovery so I was in hospital two weeks. When Mum went home, she was still worried, while I was explaining that recovery can be slow.

    Not just slow, it turned out. When the home care nurse came, she listened to my lungs and arranged for me to go back to the hospital because there was fluid in one lung. Aha! No wonder walking had been so tiring, there was a good medical explanation. More than a litre was drained from my lung in that week-long stay before I went home and recovery really started.

    It took me a long time to realize that while lots of people have mitral valves replaced, I had had more to recover from than I realized. Thirteen years later, two years after my tricuspid valve was also replaced with open heart surgery, I was in CCU with large clots on both artificial valves. I had to lie in bed as still as possible. The cardiac team researched and discussed a treatment plan with me, then used a clot-buster successfully (instead of a third open heart surgery to replace the valves). My discussions were also with the ICU and stroke teams.

    About a week after I got home, my legs got shaky and I felt overwhelmed by the realization what a death-defying experience I had just had.

    Intellectualizing my situation works for me in the short term. In hindsight I can see it behooves me to take the time and energy after to consider the whole picture in order to achieve my healthiest outcome.

    Liked by 1 person

    • Carolyn Thomas February 26, 2017 at 10:18 am #

      Terrific examples here of ‘just getting on with it’, Jenn. You also mentioned a really interesting story of your Mother coming out to take care of you: she was already anxious about you, so your ‘matter-of-fact’ response to her was likely an attempt to not worry her any further. Women tend to do this (thus protecting those around us) by pasting on that little happy-face smile, despite whatever we may be enduring. I worked with nurses for many years – all of whom said that nurses make the worst patients (for all the reasons you point out for us!) Hope you are enjoying some healthier outcomes these days…

      Like

  7. Deborah Walker February 26, 2017 at 8:36 am #

    OMG! Are you psychic? This couldn’t be more appropriate.

    Going in to have my aortic aneurysm repaired on March 7th. I know I’m very much like the author, putting my emotions in the back seat while I go through rafts of pre-op tests, organize care for when I’m recovering at home, and wrap things up at work. Right now I’m just bewildered that there were no symptoms to alert me about this thing, but I can see where that can turn into anger.

    I’m going to keep this blog to refer back to and get help for my head as well as my heart post-op. Thanks Carolyn.

    Liked by 1 person

    • Carolyn Thomas February 26, 2017 at 8:46 am #

      Thanks for weighing in here, Deborah! Delegating your emotions to the ‘back seat’ is simply doing what you know how to do right now. I think even becoming aware in advance that a delayed reponse is common is important, and this foreknowledge will help you, because unlike Summer, you won’t be shocked or surprised when your emotions start climbing back into the front seat. Are you able to come to our talk this Tuesday at the Monterey Centre? I think it would be fabulous if you could attend, especially to hear Dr. Martha Gulati speak before your March 7th procedure.

      Like

      • Deborah Walker February 26, 2017 at 1:12 pm #

        I was going to go, but now have a pre-op angiogram scheduled for that day. I understand I might be a bit of vegetable as a result. Disappointed!

        Liked by 1 person

        • Carolyn Thomas February 26, 2017 at 1:32 pm #

          Best of luck with your angio – hope it all goes uneventfully…

          Like

  8. Chris Weigand February 26, 2017 at 7:14 am #

    Its only been 5 weeks since my heart attack and my problem is my husband…

    He has been a heart patient for 25 years and suffers from venous insufficiency as well. He has been really wonderful until now. Now he has a flareup of gout in his knees so he wants me to go up and down stairs for him and take over waiting on him… I feel like my recovery is suddenly over whether I am ready or not. I look forward to shopping but he has to sit down before me and I cannot finish because I feel rushed…we cannot afford help. There must be some readers who cannot recuperate properly because of a infirm spouse… how do you do it??!!

    Liked by 1 person

    • Carolyn Thomas February 26, 2017 at 8:07 am #

      Hello Chris – I think you’re correct! There must be many people (both men and women) whose recuperation is affected because of the need to be a caregiver. Sometimes a way to get through this is by seeking as much help as you can from outside sources (can you do online shopping/delivery, for example? Can you enlist the help of friends/neighbours/family to keep him company at home while you do the shopping? Don’t make yourself crazy by tackling outings that you know you’re not ready for.

      I’m not as worried about you going up and down the stairs for him (that’s good exercise for heart attack patients) but more worried about you feeling stressed or resentful while you’re doing it. I think you may relate to this essay about Dr. Wayne Sotile’s work on family relationships and heart disease.

      Like

  9. Sharen Sleater February 26, 2017 at 5:53 am #

    With me, I coped with heart attack and surgery by believing that they had “fixed” me, so I had no more illness. I went back to work, lived my life and all was well. The following year I fell headlong into unrecognized depression. Then I realized that the disease was still there and would always be.

    So, I started doing so many different activities to “prove” I was still a viable person. It finally dawned on me that I was fooling myself to a certain degree. Yes, I am viable, but still sick. But, that is OK. Finally at peace with myself.

    Liked by 1 person

    • Carolyn Thomas February 26, 2017 at 6:05 am #

      Hello Sharen – thanks so much for that very important reminder to all: heart disease is a chronic and progressive diagnosis. Just coming to grips with that reality can be a major shock, and as you describe so well, reality often strikes long after the original diagnosis and treatment. As Summer describes it, her rational brain took the wheel and relegated her emotional brain to the back seat. This reaction is so common that, once again, I wonder why we aren’t warned about this likelihood before hospital discharge… Would mean making peace with it all might be a bit easier!

      Like

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