or What I Wish I’d Been Told When I Was Discharged
Introduction
So, you had a sudden cardiac arrest. If you can read this, you are incredibly fortunate. Many survivors have difficulties concentrating, as well as remembering, after their sudden cardiac arrest. That makes reading difficult. If you are having trouble reading this, be patient. You may need to re-read what you’ve already read, and this might be a bit frustrating.
Don’t give up. Keep trying, as it will help re-train your brain and restore your ability to read. It will also help your focus, concentration and memory recover. For now, you might want to sit down with someone you love or trust and read this together.
You may be feeling confused and maybe a bit overwhelmed by all that’s happened and is happening to you. That’s quite normal and to be expected. If you’re like most survivors, your cardiac arrest was unexpected. It probably hit you without warning and you were likely left with no memory of what happened. It’s a big shock. It affects people in different ways. Just like the first big event in your life, your birth, you’ve only got the stories that your family or others told you about what happened and whatever you’ve heard from your doctors. That may make it all seem distant and unreal, as if it happened to someone else, which may add to the feelings of confusion.
These feelings will lessen and eventually pass. Allow yourself the time to work through any confusion and your questions. You will likely have lots of questions. That’s good.
You may be aware that very few people physically survive a sudden cardiac arrest; less than one person of every 10 who have an out-of-hospital sudden cardiac arrest survive. What you may now be realizing is that those who do survive often experience some physical, cognitive and/or emotional or psychological challenges afterwards. While some survivors are back to being themselves with few complications, others experience ongoing challenges and often a roller-coaster ride of emotions. Thankfully, for some, the emotional and cognitive issues are transitory and become less of an issue over time.
In this short pamphlet, some of the cognitive and emotional issues that can impact sudden cardiac arrest survivors are described. You may experience some but not others, and perhaps even some that aren’t below. Everyone is different and has different reactions. That’s okay.
The physical issues related to a sudden cardiac arrest and recovery are not described below, such as the painful consequences of resuscitation on your ribs, or ICD or heart surgery. Unlike the physical consequences, of which physicians are aware and trained to address, the emotional impact is rarely discussed or treated. That’s why they are the focus of this pamphlet.
As a rule, for any item discussed below that you might experience, if it persists for longer than you’re comfortable and you feel it is interfering with your happiness or functioning in everyday life, please find a qualified professional to work with you to alleviate it (e.g., your doctor or a cardiologist, pharmacist, psychologist, social worker, psychiatrist or other specialist). Find someone with whom you feel comfortable working. And it does take work.
Also please remember, while you may feel very isolated or alone, and that no one can really understand what you’re dealing with, there are many other survivors out there feeling the same way or who have felt the same way. You can reach out to them on sudden cardiac arrest survivor groups on Facebook or elsewhere at such communities on the internet.
You are not alone.
Table of Contents
Below we’ll describe some potential issues sudden cardiac arrest survivors may confront:
- “Brain Fog” and Short-Term Memory
- Dissociative Identity: “I’m not the same person”
- “They just don’t get it”
- Worldview Challenges or Disruption
- Meaning, Second Chances and Finding a Purpose
- Self-Centeredness and Specialness
- Feelings of Loss
- Self-Confidence, Self-Esteem and Sensitivity to Criticism
- Shame and Embarrassment
- Anger and Sadness
- Loss of Verbal Filter and Impulsiveness
- Survivor’s Guilt
- Guilt for Family Stress and Trauma
- Symptom Sensitivity
- Fear of the Future
- Post Traumatic Stress Disorder
1. “Brain Fog” and Short-Term Memory
Some survivors say they have “brain fog”. They describe that it’s hard to focus or concentrate on tasks. Sometimes their mind is a beehive of activity and that interferes with their concentration. Some find they are easily distracted, which makes it hard to complete tasks or remember what they were just thinking about. Sometimes it’s hard to remember what someone just told them — you might find yourself standing in front of the refrigerator not remembering what your spouse asked you to retrieve moments before. Some survivors report it’s a struggle to remember the names of people or even common objects. Some find making decisions a challenge. It’s as if there is something impeding your thinking or getting in its way, like a fog.
All this can be very frustrating. It can also be frustrating for others around you, especially if they mistakenly think you’re doing this on purpose or just aren’t bothering to cooperate or listen to them. If your mind is ricocheting with too many bouncing thoughts, it’s hard to pay attention and put into memory that your spouse wants you to get the ketchup. It’s not that you forgot, it’s more that “ketchup” never got put into memory in the first place.
Why “brain fog”?
Survivors of a sudden cardiac arrest can experience some level of brain hypoxia, which means some cells in their brain may have died as a result of a lack of oxygen when their heart stopped pumping effectively. This cell death can be mild or quite severe and impact those parts of the brain concerned with memory and decision-making.
“Brain fog” can also be a consequence of the heart surgery, some survivors have, to remedy the cause of their cardiac arrest, especially if their heart was stopped and mechanically bypassed.
Another cause relates to the aftereffects of a sudden cardiac arrest, which can be very psychologically disruptive; its suddenness and arrival without warning can make some people feel extremely vulnerable and challenge how they thought the world was supposed to work, and this can make concentrating and decision-making difficult. It’s quite hard to focus on anything when you feel your life has been turned upside down. Finally, some of the medications prescribed for whatever caused your sudden cardiac arrest may impact memory, attention and decision-making (e.g., either directly or indirectly by making you feel sleepy or tired).
Short-term memory issues, such as remembering what you came down the basement to find, can improve yet be persistent – many survivors find their own strategies to compensate (e.g., making lists and completing tasks immediately, before there’s an opportunity to forget or become distracted). Some survivors report losing longer-term memories, such as the week prior to their event or, in other cases, longer periods of time. Whether or not these memories will ever be recovered is uncertain.
The “brain fog” issues may become less problematic over time and simply fade away. If you’re not seeing some improvement, after a reasonable amount of time, seek help from a professional, starting with your GP to get a referral to a neurologist to assess your cognitive functioning or a psychologist, social worker or psychiatrist for any psychological or emotional issues or your cardiologist to review your medications.
2. Dissociative Identity: “I am not the same person”
Some survivors report they feel like a different person from that person who entered the hospital in cardiac arrest. It’s not only that they feel differently from how they felt before, it’s more that they feel they are a different person. It’s as if the sudden cardiac arrest re-set, re-booted or shifted their core identity in some fashion. They feel disconnected from who they were before the cardiac arrest. It’s like a form of dissociative amnesia, perhaps as a result of the emotional trauma of the event or something neurological.
Many say the phenomenon is hard to describe. There just aren’t the words available to articulate what they are experiencing. Many don’t share these feelings with their loved ones or others because it’s so hard to explain. This can be frustrating in of and by itself but more so when people tell you that you look the same as you always have. To the outside world you very well may look the same, but you may feel very alien in your own body and frustrated by their declarations that you look the same. Ironically, you might at the same time be working hard to appear as if nothing has changed – that this sudden cardiac arrest hasn’t really affected you – to mask your feelings of vulnerability and insecurity. You may be supporting the perception that you’re the same as you always were.
These feelings appear to dissipate and pass in time as you get used to, and comfortable with, who you are and settle into a life routine. You might strongly feel the difference at the beginning of your journey but, in time, forget you had these concerns at all. Talking it out can be helpful, if you are willing and brave enough to try to share how you feel with someone you trust. Write down how you’re feeling in a personal journal; getting your feelings on paper can help you articulate and understand them better. Describing how you feel can reduce the emotional power of those feelings; words written down or on your tablet are often less powerful or threatening than the ideas they describe in your head.
3. “They just don’t get it”
Because a sudden cardiac arrest is such a singularly personal and potentially highly meaningful event, survivors often say that other people “just don’t get it” – no one can ever understand what they have gone through, or are going through, except perhaps other survivors. This may very well be true, and to be expected after such an event, but it’s unlikely to stop people from trying to understand your experience.
Most of their interest is related to their genuine empathy and concern for you, and their need to express that – they’re trying to be supportive.
Part is related to their own fears and trying to understand your story might help alleviate them.
Part is likely some curiosity about death or near-death experiences and gathering any insights you might have.
For your part, you may find all the attention annoying. Maybe the words just aren’t there or you’re not ready to discuss something so emotionally raw as your experience. It’s also possible that others “don’t get it” because you’re masking your emotional vulnerability by pretending to be your old self. Under those circumstances, it would be hard for them to get it.
At times like this, it might be appropriate and honest to simply state that “I’m finding it very hard to explain, to put words to” or “I’m just not ready to do that now” and then promise to get back to them. You might want to start talking about the things you can put words to or are comfortable discussing, like any memory issues or physical changes, if these apply. The more you talk about it, the less emotional power your experience will have.
Be patient and trust that other people are trying to understand, and not challenge, you. Stop pretending everything is okay and let yourself be vulnerable. You don’t want to alienate or isolate yourself from the people who love you: trust that they’re on your side.
Don’t allow yourself to get defensive or angry; you may feel like you are not yourself, but you can still be civil and loving. Give them a chance to understand. Get in touch with other survivors and talk with them; that may help you feel less isolated, more connected with people with shared experiences and give you the language to express how you feel about what you experienced.
4. Worldview Challenges or Disruption
Like a lightning strike on a sunny day, a sudden cardiac arrest can challenge or shatter your beliefs. Even without memories of the cardiac arrest, its unpredictability may severely undermine your confidence in how life is supposed to work.
There you were, on a somewhat stable and perhaps comfortable trajectory in life with a good grasp of how it was going to progress. Now that’s been upended and irrevocably changed.
That’s how some survivors feel. As a result of the disruption in their life, and lacking a coherent way of explaining it, some begin to question their choices, behaviors and truths they hold. For the religious, a sudden cardiac arrest may challenge, or strengthen, belief. Religious belief and doctrine may provide an explanation for some survivors wrestling with why they were chosen to face this trial and allowed to survive. For others, it may provoke questions and doubt. Either way, survivors may feel disoriented about their life and life goals.
This disorientation is to be expected after such a traumatic experience. The unpredictability or randomness of this type of cardiac event calls into question many beliefs people might hold, about their decisions, behaviors, lifestyle, well-being and future, as well as any spiritual or religious beliefs.
As your new reality unfolds and there’s a bit more certainty in your life, the disorientation will likely fade. As you feel more confident in yourself, you’ll find you’ll feel more confident about, and anticipate, your future. In the meantime, don’t make any major decisions about your life, like quitting your job, leaving your family situation or walking away from your beliefs. While you may feel renewed and charged with a new sense of purpose, you might still be emotionally vulnerable and your decision-making and judgmental abilities compromised. The time for change is after your recovery.
Be patient.
5. Meaning, Second Chances and Finding a Purpose
Closely related to having your worldview and beliefs challenged, and perhaps a consequence of the struggle, some survivors report feeling a need to find meaning or a new purpose in their lives after the event.
For some survivors, extracting some meaning from the event is very important, perhaps because possessing meaning would make it appear less random and more understandable and controllable. Some wonder why they were chosen to experience a sudden cardiac arrest and why they were chosen to beat the odds and survive. The event becomes a cryptic message or cipher that is theirs to solve.
The search for meaning from the event, or a non-medical explanation for “why did I die” or “why did I survive”, may become a very consuming solitary journey. As you focus your attention inwards, you may begin to neglect your external relationships and obligations and end up isolating yourself. Those closest to you may not understand your fervor for meaning and be a little less engaged in joining you in pursuing it.
Some survivors feel a personal drive, or impetus from others in their social networks or from their religious beliefs, to find some new purpose after their survival. Some say they’ve been given a second chance, either by design or by luck or circumstance, through their survival.
The former survivors may feel a need to acknowledge or repay the “blessing” of survival by seeking new purpose commensurate with their gift of life. This post-arrest purpose must be beyond the mundane and be significantly meaningful, which may pose challenges as the goal might be difficult to define and therefore very hard to achieve.
The latter survivors may see their survival more as an opportunity for change or to do some things differently. This might be easier to accomplish as the goals could range from the practical, “I will quit smoking” to the more philosophical, “I’m going to appreciate each day”.
Other survivors discover purpose through their own observations of how their lives have already changed in positive ways: “Since my cardiac arrest, I’ve spent more time with my children.”.
The search for the meaning and purpose from your sudden cardiac arrest can be very frustrating or wonderfully satisfying.
The search for meaning can be productive and potentially made more so with feedback and input from your trusted friends and loved ones. Include those most dear to you in your search by asking them to help you on the journey. Try not to let it consume you. Some mysteries are never satisfactorily solved – that’s why they’re called mysteries. The word “mystery” is derived from the ancient Greek word “myein” which means “to close”. You may find meaning from your cardiac arrest once you stop actively looking for it. Maybe let meaning find you.
The search for purpose can be a very rewarding and healthy process, especially if your goals are well-articulated and achievable in whatever timeframe you’re comfortable. Searching for purpose can also be highly frustrating and unfulfilling if your expectations are too high and your goals unclear. Start small, taste some success and keep going and growing the goal. Define your own purpose, rather than what you think others expect of you, after all, it’s your second chance and not anyone else’s. Some survivors wait for their purpose to show itself or find them – that seems like a reasonable strategy.
Helping others, in small or big ways, is an effective path to recovery, as it helps focus your attention outwardly instead of inwardly and on your own struggles.
6. Self-Centeredness and Specialness
Whether because of the unlikely odds of surviving a sudden cardiac arrest, or the singularly personal nature of the experience and its trauma, some sudden cardiac arrest survivors can become self-focussed and self-absorbed, and become hyper-sensitive to how others are treating and reacting to them.
You may feel alone or isolated because you feel no one really understands your experience. People may treat you as if nothing has changed, which might increase your sense of isolation. At the same time, you may be wrestling with existential questions, such as “why me?” and “what now?”. All this, in addition to the fact that you might be physically isolated at home for a period, might focus your attention inwardly, on yourself and your circumstances. You might find yourself doing a lot of self-reflection and paying less attention to important others in your life.
As well, as a product of surviving such an event, you may feel unique or even special – after all, you beat the odds of surviving an out-of-hospital sudden cardiac arrest. Combined with all the attention you may have received from others for your survival, it may be hard not to feel somewhat special. These feelings of specialness can take many forms among survivors of a sudden cardiac arrest.
Some survivors may feel they were lucky, or in the right place at the right time, to have been resuscitated or to have survived.
Some may feel they have returned from being dead or from visiting “the other side” (e.g., a near-death experience or NDE) and, for some, this confers upon them a very special spiritual or religious status.
Others may feel “blessed” or that they were singled out by a divine power, given a second chance, either because of their inherent goodness, to fulfil some divine purpose or for some reason yet to be discovered.
And others may feel they didn’t deserve to have a sudden cardiac arrest, after the exemplary life they’d lived.
These feelings of specialness, if they go too far, may become a lens of self-centredness or superiority – you may unwittingly begin to make everything all about you, at the expense of your family and friends. You may begin to feel deserving of being the centre of attention. You may even come to think that, compared to your experience of dying and returning, others’ life events and concerns are somewhat trivial or petty. You may become very sensitive to how people are responding to you and question whether they’re treating you with appropriate amount of gravitas, given the meaning you have assigned your experience. Lacking a verbal filter, you might tell your spouse his/her everyday concerns pale in comparison with what you’ve been through. Self-pity is at the other end of the specialness rainbow – feeling sorry for oneself or unfairly punished for having a sudden cardiac arrest. You may even begin to welcome a certain amount of others’ pity.
Over 350,000 people in the United States annually experience an out-of-hospital sudden cardiac arrest. In that context, the question “why me?” is a highly emotional response, not a rational one, and seems like a product of inflated self-importance. And each year some 35,000 survive, against the same low odds we faced, so any specialness we grant ourselves gets diluted each year as more survivors join our ranks.
As survivors, our psychological isolation and the personal meaning we ascribe to our cardiac arrest may necessarily focus our attention inwardly, on ourselves. That, and our survival and the attention it receives, may have us feeling special or even superior. It’s okay, even healthy, to feel unique and special but not when it comes at expense of our relationships with others. Try to be aware of your behavior and your thoughts. If you might feel emotionally isolated, talk to someone: someone you feel comfortable talking to, like another survivor or trusted friend, or a therapist. Don’t allow yourself to become physically isolated: get outside and among people. Listen to others and enquire about their lives.
The irony is that the more you focus on the others in your life, particularly in helping others, the faster you will recover. Get outside of yourself and focus your attention on the people who care about you. That’s a good step to recovery.
7. Feelings of Loss
Survivors report feelings of loss and grief. For some, the sudden cardiac arrest and its consequences mean a temporary absence from work or a different job at work or even the loss of employment altogether. Work is often more than simply a source of income. Losing a job can also mean a loss of identity, purpose and power. Feelings of loss may also come from not being permitted to drive the car, enjoying the foods or drink you like, reading or other activities requiring concentration, or participating in the sports or other activities that brought you joy. Feelings of loss may arise from a lack of competence or confidence some survivors have in themselves, or their body, after such a sudden and unexpected let-down. Feelings of loss may come from the stark reminder that death is a fact of life, something they narrowly avoided for the time being. You might simply experience the loss of normalcy that you took for granted for so many years. You may grieve or mourn the loss of your former self or former life.
These feelings of loss and even grief are to be expected. There’s no avoiding loss as a result of a sudden cardiac arrest, even if you can dig out some nuggets of growth (and it’s certainly possible you can!). For some, these feelings can lead to sadness or anger, but for many they’re slowly washed away with life’s constant current. Life has a way of distracting us from ourselves. As you adapt to your new life, you’ll gain a new perspective and confidence, and the loss becomes a memory.
Talk your feelings out with someone you trust. Recognize the thoughts you have that sabotage your confidence and undermine your happiness. Persistent feelings of loss might be a sign of depression. If the feelings of loss or grief persist and interfere with your life, seek professional help. Cognitive behavioral therapy (CBT), for example, offers approaches to help manage unwelcome thoughts and your reactions to them.
8. Self-Confidence, Self-Esteem and Sensitivity to Criticism
Some survivors share that their sense of their own value or worth as a person was profoundly and negatively affected by the sudden cardiac arrest and its consequences. They may feel that their heart or body let them down and failed them. At the same time, they may feel they’vefailed, and begin to lose trust and confidence in themselves.
A cardiac arrest is a sucker punch to the ego. Combined with accumulated feelings of loss and the changes in self-confidence, one’s self-esteem and self-worth can also suffer.
You may find yourself quite sensitive to what you perceive to be criticism. It may be that you are misperceiving criticism for something more benign because you’re feeling poorly about yourself and emotionally vulnerable. Feeling physically compromised and less like the strong competent person you once were, you may perceive criticism where there isn’t any, or even look for it. If left unchecked, you may begin to resent or alienate the people you love as you misperceive their observations or comments as criticism. This will compound the feeling that no one “gets it” or can understand what you’re going through and lead to a self-fulfilling prophecy as people stop trying.
Cardiac rehab, if available, can be a productive way to gain confidence in your heart’s ability to work properly. As you regain confidence in your heart, you’ll also gain confidence in yourself. Some rehab programs offer stress relief techniques and other benefits.
As your heart and body recover, and your life begins to become more routine, you may not notice how much your confidence has been restored and that you feel pretty good about yourself. And that’s too bad because it’s a good reminder of how far you’ve come and evidence of your ability to grow.
Remember to look for and celebrate the little advances towards recovery – being able to walk further, go a day without thinking about your cardiac arrest or just feeling good about yourself.
9. Shame and Embarrassment
Some survivors report that they felt ashamed and embarrassed to have had a sudden cardiac arrest. They may shrink each time someone excitedly approaches them saying “I heard you had a sudden cardiac arrest! Wow!”. All this attention for what you might feel was a personal failing, or at least something you had nothing to do with, is unwelcome.
Others’ excitement might be understandable but their attention undesirable. Having no memory of the event and no foreknowledge of it, you might feel little ownership over it. The attention, you might think, is misplaced, and the focus on you is just embarrassing. “I had nothing to do with it!” you might scream inside your head.
Shame and embarrassment can also be related to the feelings of loss. The sudden cardiac arrest can precipitate an emotional cascade of tragic losses: status, income, identity and sometimes relationships. Such losses can provoke feelings of failure and shame.
Some survivors feel ashamed because their sudden cardiac arrest was caused by atherosclerosis or a heart attack, and not an inherited arrhythmia or structural heart issue. They may fear others will sit in judgment of them for the lifestyle choices commonly associated with coronary artery disease (i.e., smoking, poor diet, no exercise, weak self-control), whether true or not.
If you feel some shame or embarrassment, you’ll likely not want to talk about your experience. That might be very difficult to avoid yet the more times you’re faced with it, the easier and more commonplace telling your story will become. And you’ll get over being embarrassed. Among a group of 100 people with the same predisposing conditions, medical science really doesn’t understand why one will have a sudden cardiac arrest and the others won’t. Talk about your feelings with someone you trust and/or write them down. In time, these feelings will pass like many of the others, as you re-build your confidence and competence.
10. Anger and Sadness
Related to the feelings of loss and the disruption of beliefs, another potential consequence is anger and/or sadness. For some survivors, there is a significant amount of loss related to the cardiac arrest: loss of a way of life, work, income, identity, self-confidence and self-worth.
The grief from the loss can be directed outwards, as anger or intolerance at others, or inwards, as sadness or depression. The more significant the source of loss is to your core identity, the greater the feelings of loss and consequent feelings of grief, anger or sadness.
Some survivors report being less tolerant of others’ foibles or idiosyncrasies. Some survivors also report being impatient and “quick to temper”. Like some other emotional issues, these reactions might be a product of the inward-directed focus of survivors – the transient selfishness – and feelings of low self-worth. All this might be expressed as impatience, intolerance and anger.
Others may feel sad or even depressed. If you are feeling sad to the point that it is interfering with your day-to-day functioning and you’re losing interest in doing the things you like to do, please talk to your doctor; depression is not uncommon among survivors.
All these behaviors, if not recognized and checked, can isolate you from those you love. Recognize your feelings of loss and grief. Think about how you’re going to respond, when frustrated, and watch out for the anger in your communications. Reflect and look for sadness within yourself and deal appropriately with it – don’t ignore it and let it fester. Talk to someone about your anger or your sadness and seek out qualified help if you need it.
If you’re feeling anger to the point of having difficulty holding back from lashing out at or hurting someone, don’t explain away your reaction, get help immediately.
11. Loss of Verbal Filter and Impulsiveness
The loss of verbal filtering or censoring behaviour is a potential consequence of a sudden cardiac arrest. Some survivors feel liberated from checking or censoring their opinions and remarks, after their death-defying event, and suddenly feel free to “tell it like it is”. Others who’ve experienced some mild or transitory brain injury and may temporarily lose this filter. In some cases, impulse control can become an irritating or even dangerous behaviour.
These behaviors, while perhaps personally liberating and exciting, can cause friction in your close relationships and isolate you from your loved ones. What seems refreshing or funny to you might feel quite oppressive and self-centred to the ones you love. The people around you may cut you some slack, for a while, but be less forgiving of your self-indulgence and -focus as time passes.
Look for others’ reactions to your comments and actions as you might not be aware that you’re being caustic or rude, or acting without forethought.
Be vigilant about your verbalizations and actions yet be forgiving of your transgressions. Change takes time and work. If your lack of impulse control is putting you or others in danger, seek help from a professional.
12. Survivor’s Guilt
Some survivors feel guilty about being alive, especially in the face of others’ not surviving. It’s as if survival from a sudden cardiac arrest was a zero-sum game: for someone to survive, someone else must die. Some seem to believe that if they hadn’t survived, someone else might have. Part of these feelings of guilt may be due to survivors’ self-focus and feelings of specialness, as part of surviving a cardiac arrest against all odds. As a result, it seems almost natural that they may exaggerate their personal significance and perceive their survival as somehow deterministic. They may wonder if some selection is occurring behind the scenes.
Some may just feel lucky, but somehow undeserving, in the survival lottery. Survivors’ guilt may be a function of the erosion of self-esteem and self-worth, which contributes to some survivors feeling, at the time, not worthy of being a survivor. This can especially be evident if they know or read something about the person who didn’t survive and, compared to his/her virtues, find themselves wanting.
Survivors’ guilt isn’t unique to sudden cardiac arrest survivors. It is common in situations where survival is a low probability. It is an emotional response to surviving against the odds, not a function of rational analysis of the facts.
Some 35,000 people survive each year, among the 357,000 who have an out-of-hospital sudden cardiac arrest (CDC 2015 statistics), and few of those who do survive escape undamaged. Survivor’s guilt tends to overlook the fact that not all survivors face a rosy future – many experience pain and suffering, and cognitive deficits, for years afterwards. Not all survivors feel the same joy at having survived.
These feelings of guilt will typically lessen in time as you begin to feel more involved in the joys and struggles of life. As you are eventually forced to look outwards, away from yourself, to negotiate with the external world – going to work, shopping for groceries, dealing with relatives and friends – your internal ruminations and feelings of guilt will likely fade.
Some survivors’ searches for meaning or purpose from their cardiac arrest help alleviate these feelings, as their efforts serve to “give back” or compensate for their survival. Helping others might be a great way to help yourself.
13. Guilt for Family Stress and Trauma
Some survivors feel guilty about the stress and trauma their loved ones experienced as part of or due to their sudden cardiac arrest. Some family members may have witnessed the event or participated in the efforts to restore your heart’s rhythm. Some may have experienced profound shock. Some may have felt powerless. Some may have been told at the hospital that the probability of your survival was very low and that if you did survive, you might be in a vegetative state.
The person experiencing the sudden cardiac arrest isn’t the only person impacted; it’s a family affair. And it can be traumatic. Even if your loved ones didn’t witness your cardiac arrest, they may have gone through great anguish about whether you would survive and what life will be without you. As well, those closest to you may forced to deal with your emotional affect from the arrest: your self-focus, ruminations, isolation or whatever. As challenging as this is for you, those closest to you are likely suffering as well. A sudden cardiac arrest can impose huge strains on close relationships.
Feeling guilty won’t help those closest to you if they’re suffering as a result of your sudden cardiac arrest. Talking to them about their feelings, and what they experienced, will. Telling them that you feel guilty about their anguish won’t; it makes the conversation about you, not them, and will only get them to focus on helping you get over your guilt. Get them talking and help them get their emotions out and visible. Be sensitive to their needs and recognize that they will likely continue to be worried about your well-being for longer than they need to be worried. In time, like you, they will begin to recognize that you are on a path to recovery. If you think they need help, talk gently to them about what you’ve observed that makes you feel that way.
14. Symptom Sensitivity
Once discharged from the hospital with a treatment plan, it’s as if life is expected to continue as it was for sudden cardiac arrest survivors. You’ve been diagnosed, prescribed medications and/or had an ICD (implanted cardioverter defibrillator) installed and perhaps advised to enrol in a cardiac rehab program.
Some survivors, for some time after discharge, have a heightened sensitivity of physical sensations they would otherwise have never recognized or just ignored, before their cardiac arrest. Bodily pains, heart palpitations, shortness of breath and other such symptoms can cause alarm, often increasing your heart rate as fear kicks in. As fear grows, the physiological responses to fear kick in, which may the sensations worse.
Many survivors feel fatigued or tired after their cardiac arrest and this can be the result of the cardiac arrest itself or the drugs prescribed for whatever caused it (e.g., beta blockers like bisoprolol). Fatigue can also be a symptom of depression, which can result from a sudden cardiac arrest or the fall out from it. Given the nature of sudden cardiac arrests, symptom sensitivity is understandable but will tend to abate in time, as evidence accumulates that you are physically on the road to recovery. However, there is no downside to contacting your doctor if you are concerned. That’s their job.
There may also be sensitivity to the medications prescribed; for some survivors, this is their first exposure to taking medications. Reading the potential list of side-effects of any medication can be eye-opening and frightening, and it’s easy to lose sight of the fact that most listed side-effects are extremely rare. The prevalence of the side-effects of some medications, statins for example, have been exaggerated in the media and public imagination to the point of becoming a public health issue – people prescribed the medication are reducing or stopping their intake, resulting in unnecessary deaths. If you have concerns about your medications, talk to your doctor (and don’t rely of Dr. Google, or other survivors’ advice or those posing as medical doctors on the internet).
If you’re feeling fatigue combined with sadness, and it is getting in the way of your usual daily activities, please talk to your physician about it. Depression is an illness, just like some of the causes of sudden cardiac arrests are illnesses. If treating the cause of sudden cardiac arrest makes sense to you, so should treating depression.
15. Fear of the Future
Fear of the future potential of a sudden cardiac arrest is not uncommon among survivors. Depending on what specifically caused your sudden cardiac arrest, if known (i.e., not “idiopathic”, which means unknown), your cardiologist or electrophysiologist should be able to give you some idea of future likelihood of reoccurrence and how to reduce that probability (e.g., ICD or implanted cardioverter defibrillator, medications, behavioral strategies, exercise and perhaps diet). Cardiac rehab can also build personal confidence in your heart’s ability. Beyond that, as time passes without an incident, you will gain confidence that future such events are less likely than you once believed. Cognitive behavioral therapy (CBT) is a good option if impinging thoughts of reoccurrence or doom interfere with your happiness.
16. Post-Traumatic Stress Disorder
Some survivors report feeling highly anxious and sometimes experiencing panic attack (e.g., growing feeling of doom or threat, perspiring, high heart rate, dizziness), often triggered by some reminder of their sudden cardiac arrest, such as hearing the sirens of emergency vehicles. Some have been diagnosed with post-traumatic stress disorder (PTSD). Talk to your family doctor or a therapist trained to deal with PTSD for help, if you think this is happening to you. There are new and effective treatments for PTSD.
Post Script
Some people report they found profound meaning and meaningful change through their sudden cardiac arrest. Others’ ongoing struggles with their post-cardiac arrest physical, cognitive and psychological conditions almost preclude the time and energy for such reflection. Most, I suspect, fall somewhere in between. There are many roads to recovery: some are shorter and some longer, some arduous and some straightforward. We don’t always get to choose which road we’ll take but we can choose how we’ll travel it.
Be patient, find someone to travel with you if you can, and tell anyone who’ll listen where you’re hoping to go. Be patient with yourself, and with others, on your journey. It may take no time at all or it may take a couple of years to really feel comfortable with yourself again. Keep in mind the wisdom of other sudden cardiac arrest survivors: Your heart will likely recover a lot faster than you will.
Requiem for a Sudden Cardiac Arrest
Amid the confusion and chest-thumping blows
I silently slipped to where nobody knows
Then the lights turned back on and time re-started
Though I returned not the same as when I departed
While I long to go back to where I don’t know
I just stare at the mirror wondering where did I go
© 2019
The information in this pamphlet is imperfect but close to what I wish I had received when I was discharged from the cardiac intensive care unit. Released with a prescription for medications, a scheduled follow-up cardiac appointment and the consolation of the social worker after I couldn’t climb a flight of stairs without stopping and sobbing, no one prepared me for the emotional ordeal waiting for me at home. When my family disappeared to work each morning, I was alone in the line-up for the emotional roller-coaster that is recovery. Early on, I sometimes wished the roller-coaster would just leave the tracks with me on it. Later I began to anticipate and get used to the steep climbs and dizzying dives, both the scary and exciting parts, and realized I could get off whenever I wanted. After all this, I still feel a strange pull toward the haunted house.
Many of the ideas expressed above come from my observations of and reflections on my own response to my sudden cardiac arrest, as well as from questions, comments and reflections of survivors of sudden cardiac arrest on Facebook and elsewhere on the internet. Not everything a survivor might experience has been included above; for example, there’s no mention of ICDs (implanted cardioverter defibrillators). Some consequences of a sudden cardiac arrest are directly related to whatever caused the event but what is discussed above is intended for all sudden cardiac arrest survivors, regardless of the originating cause of their event. If I have offended anyone by what’s not included or what has, I apologize.
I hope this provides some help to future survivors and caregivers.