Surviving sudden cardiac death
For twenty-three minutes on October 18, 2021, I was dead.
I lay sprawled across my living room floor, pulseless and unresponsive, as two teams of firefighters and EMTs administered epinephrine, delivered defibrillator shocks, and performed chest compressions. There was a ninety-five percent chance that this would be the end of the road for me. My life, my work, my relationships, my hopes and dreams, my legacy. Complete.
Against those odds, I survived. My physicians later told me that every single thing had to go exactly right for me to be here today. And I am.
In the years since, I've learned an extraordinary amount about sudden cardiac arrest, much of it the hard way. Before October 18th, I didn't even know what sudden cardiac arrest was. If someone died from a heart-related event, surely it was a heart attack. Right? Wrong.
Simply put, a heart attack is a plumbing problem. Blood flow to part of the heart becomes blocked, damaging the heart muscle, which generally continues beating. Sudden cardiac arrest, on the other hand, is an electrical problem. The heart's electrical system malfunctions, causing it to stop pumping blood effectively. Within seconds, circulation stops and the person loses consciousness, as abruptly as a light switch being turned off.
They are two very different medical emergencies, although a heart attack can sometimes trigger cardiac arrest. The distinction matters enormously. While many people survive heart attacks, the vast majority of people who experience cardiac arrest outside a hospital do not. Without immediate intervention, including CPR and often defibrillation, cardiac arrest is fatal within minutes.
I've shared pieces of my recovery on social media over the years, prompting others navigating similar heart-related struggles to reach out. Their fears were familiar, and their questions were often ones I'd asked myself, sometimes without ever finding satisfactory answers. I became increasingly frustrated by the lack of readily accessible information about sudden cardiac arrest, particularly what happens to those of us fortunate enough to survive it. With that in mind, I decided to create this website.
My hope is that by sharing my experience, along with the information and resources I've painstakingly gathered along the way, I can help others feel a little less afraid and a little less alone. Although this is a survivor's account, I hope it also offers some measure of understanding to those whose loved ones did not survive.
Just as my story is ever-evolving, this site will be too. I'm not a physician, and if I get any of the medical terms or explanations wrong, I welcome corrections and additions. I want this resource to be as accurate as it is helpful.
Finally, to the people who fought to bring me back to life, and to the family, friends, and colleagues who stood beside me through the uncertainty of everything that followed, thank you.
My gratitude for this second chance at life is immeasurable.
xx, Liz
October 18, 2021
On a Monday unusually filled with Zoom rather than in-person meetings, I asked my newly minted boyfriend of six weeks if he wanted to work together from home. At the time, I was a year into my position as CEO of Fulcrum Group, a multi-brand events portfolio spanning industry software to large-scale festival production, and almost never worked from home.
From what I remember, I was feeling perfectly normal without any signs of an impending cardiac arrest (labored breathing, fatigue, dizziness, nausea, chest pain). As my physicians put it - I was “robustly healthy” and in good physical shape. I’m not sure what triggered the decision to stay home or to ask my boyfriend to stay with me that day, but they are decisions that ultimately saved my life.
After finishing up Zooms and firing off the last of my emails, I decided to call it a day around 4PM, shifting focus to figuring out a grocery shopping list for dinner. While sitting at my dining room table typing ingredients into my phone, I abruptly and unceremoniously slumped over.
My boyfriend presumed that I was having a seizure and called 911. When it became clear that I wasn't breathing and didn't have a pulse, my boyfriend ran downstairs to prop open the apartment building door for the paramedics, then returned to begin chest compressions.
So focused on administering CPR, my boyfriend barely noticed when two teams of firefighters and paramedics arrived five minutes later, tapping him on the shoulder to take over lifesaving measures. I was quickly turning blue and purple, and nothing seemed to be working to bring me back to life.
Down without a pulse for twenty-three minutes, it would have been understandable if the first responders gave up. But they didn’t. Finally, after three shocks, epinephrine doses, and consistent chest compressions from a LUCAS device, I regained a pulse.
The fire department’s notes indicate that I came roaring back to life. So much so, in fact, that they had to tie my hands down because I kept detaching all of the medical equipment, “patient was extremely strong and kept breaking free.” For those who know me, I’m certain that comes as no surprise.
Medically induced coma
Though I had Kaiser insurance at the time, the paramedics opted to take me to California Pacific Medical Center (CPMC), the closest hospital to my apartment. There, I was diagnosed with sudden cardiac arrest due to ventricular fibrillation (when your heart’s electrical system misfires and rather than pumping blood, shakes rapidly like jello instead) with an ejection fraction (the amount of blood your heart pumps to the rest of your organs) of twenty-percent (with 56-70% being the normal range).
Immediately, the ICU put me into a coma so that they could cool down my body temperature. The cooling technique protected my brain from further breakdown and damage (akin to putting milk in the fridge rather than leaving it at room temperature to curdle). I’ve since heard this process explained by a neurologist, who said that this does not increase your likelihood of survival, but it does help with neurological function and quality of life after survival.
My family remembers this as a particularly harrowing period of my hospitalization, because they were consistently receiving warnings that even if my body survived, my brain might not. If I did wake up, I would likely need extensive cognitive rehabilitation. Throughout my medical notes at this stage, the words, “High Probability of Imminent Deterioration” appear often.
The next day, the focus was still on neurologic function, and I remained comatose. Twice, the hospital’s chaplain came to visit me for end of life support. My mother, father, and brother took turns by my side hoping for the best, with no understanding of how this happened or what my future looked like. My mom remembers singing lullabies from childhood and holding onto my feet because they were the only part of my body not submerged in ice packs.
On the third day, my physicians began the rewarming process. I was still intubated, but awoke suddenly and cinematically. I ripped my tubes out and tried to escape from my hospital bed. During a check-up appointment months later, my cardiologist said that this was a positive sign of strength, though at the time it made me an enormous pain in the ass for everyone in the ICU.
ICU delirium
My first words were to ask whether my neurological function was impaired. The physicians quickly determined that my brain was shockingly intact despite an anoxic brain injury from the lack of oxygen during the time that I was down.
That brief triumph quickly unraveled into confusion, anxiety, and ultimately bilateral wrist restraints. The toll that the cardiac arrest took on my mind and body, coupled with the intense cocktail of medication used to induce the coma (propofol, fentanyl, and pentobarbital), made it so that I couldn’t process or remember why I was in the hospital. On loop, I asked my family to tell me why I was there and what happened. They patiently explained the situation every single time.
When my family wasn’t there to explain things to me, I made up myriad stories for my nurses and physicians. I was there visiting a friend. I was there participating in a medical school exercise as a volunteer. The year was 2020, and I’d had a heart attack a couple of years earlier in Santa Cruz (completely false), and was there for a check-up. I was defiantly certain that I should be allowed to leave.
Despite my clear agitation, I refused to take anti-anxiety medication. This resulted in two attempts at 5150 holds (both of which were denied). My medical notes heartbreakingly reveal that I frequently screamed for my mom. I repeatedly wriggled out of both wrist and chest restraints, removed my monitors and IVs, tried to visit with other ICU patients, and helped myself to juice boxes from the nurse station (my family noted that I was extremely thirsty during my time in the hospital and would frequently steal their water bottles as well). At one point, my delirium and escape tactics were so overwhelming that in addition to my restraints, I had a hospital babysitter assigned to my bedside 24/7.
I have zero memory of this time in the hospital. Even knowing this disorientation was medically understandable, I was unprepared for the anguish and indignation I felt reading about it months later in my medical records. As a former litigator accustomed to advocating for others, being unable to explain or advocate for myself was particularly jarring.
A Ceremonious Departure
After several days, the delirium subsided and I was scheduled to move from the ICU at CPMC to Kaiser for surgery. The evening before I moved to Kaiser is my first lucid memory. As I was wheeled out of the ICU, nurses and physicians assembled in a line to clap for me - one of them grabbing my hand to tell me that I was their miracle.
I was placed in a beautiful room resembling a hotel suite (I thought that I imagined this, but my mom later confirmed). I couldn't figure out how to change the channel on the TV in my room, so I watched Cast Away with Tom Hanks and his volleyball companion, Wilson, on repeat until the sun came up. I remember feeling blissfully calm and happy to be alive.
Kaiser transfer
I arrived at Kaiser by ambulance in the early evening and was placed in a room with two other patients. With hospital staff tending to the three of us throughout the night, sleep seemed unlikely. Looking for a distraction, I searched a bag beside my bed and found stuffed animals, get-well cards, and a copy of Talib Kweli’s Vibrate Higher, with a bookmark featuring a photograph of Ruth Bader Ginsburg tucked inside. I spent the next eight hours reading it cover to cover.
By the time my mom arrived the next morning, I was itching to move to a quieter room. In addition to my equally loud and lovely roommates, a hospital staff strike began outside my window. The cacophony of chanting, bullhorns, air horns, and drumming was overwhelming as I tried to process what had happened and what lay ahead. I sat with my mom in the hallway for hours until I was moved to a new room that allowed me to rest before my surgery.
First surgery
On my second day at Kaiser, I learned that I would be receiving a defibrillator. I was given forms to sign consenting to the procedure, but felt that something of this magnitude should be an informed discussion. I requested a meeting with my surgeon, who let me know that he adamantly felt this was the best next move. The surgery would install a pager-sized box (housing a battery and electrical circuitry) a few inches below my collarbone, and one electrical lead (a wire placed into my heart to deliver shocks). Should my heart stop again, the defibrillator would do its best to restart it. At this point, a pacemaker that might also improve my weakened heart function wasn't discussed. I wouldn't learn about that possibility until months later.
My brother was there for this conversation, having brought me Round Table Pizza for my first non-hospital meal in a week. I could only manage a couple of bites, but it was comforting to have the scent of my favorite childhood pizza in my sterile hospital room. I remember looking at my brother’s exhausted and fragile face, sitting in a chair at the foot of my bed. For the first time, it occurred to me that while I’d been in a medical haze, my family had been through hell.
As I was wheeled into surgery, my nurse let me know that I would be mostly awake during the procedure under twilight sedation, and could pick any music I wanted for the operating room. I was thrilled. If you know me and my love for 80’s hair metal, this won’t come as a shock - I immediately chose Van Halen and Def Leppard for the operation, and did my best to refrain from singing along during the two-hour surgery. Given my Houdini routine in the ICU, I was handcuffed to the gurney. Other than the restraints and the music, I remember feeling intermittent sharp pain and focusing on the cluster of tiny bright lights in the procedure lamp above me.
The surgery went well, but I had to stay for observation that evening. The IV line in my right arm, which had been in place for eight days, was becoming visibly inflamed. A dozen nurses tried to place a line in other areas of both arms and hands to no avail. Empathetic to the tears streaming down my face, the nurses explained that they had no choice but to keep trying. After an hour, an ultrasound was used to successfully place the line. I still have a scar on my arm from the needle.
After my ICU delirium experience, I’d refused morphine post-surgery in order to stay alert, but was now regretting that decision between the IV line pricks and increasingly throbbing incision on my chest. I desperately just wanted to go home.
Home
The next morning, I was given a bag of medications (Entresto, Metoprolol, Spironolactone, Tylenol, and Trazodone) and the green light to leave the hospital. My clothes had been cut off by the paramedics, so the nurses gave me black joggers and a sweatshirt to wear home. As I made my way into my apartment building and sank into the freshly laundered sheets of my own bed, it dawned on me that while I sort of understood what happened, I had absolutely no idea why it happened.
Examining myself in the bathroom mirror, I noticed punctures and bandages all over my body. The most shocking was a dime-sized hole on the right side of my neck that I later learned held a tube that was several feet long, coiled into my heart for cardiac catheterization (post-arrest heart failure testing).
To add to the confusion, I wasn’t sure what I was allowed or able to do. I knew that I couldn’t drive a car or drink alcohol for at least six months, and that it was critical that I didn’t lift my left arm over my head for several weeks as my defibrillator wire gelled into place in my heart. I wasn’t supposed to have an MRI, stand near a microwave, or keep my phone in my front pocket near my heart to prevent interference with the defibrillator. And I couldn’t lift anything heavy.
I was less clear on how hard I could push myself physically. Four days into bedrest, I decided it was time to get some fresh air (my favorite pastime is walking through my neighborhood near the bay). I told my boyfriend that I was taking a quick trip to the corner store and back, but ended up on a two-mile walk, snapping photographs of the skyline along the water. I didn’t realize that this was a dangerous decision at the time. I needed some semblance of normalcy. That familiar walk felt like a small act of reclamation.
During these first few confusing days, the text messages, voicemails, flowers, and cards that came in a steady flow from friends and family were deeply moving. I’ve never felt more potent or healing love in my life.
Raging alcoholic? meth-head?
A week after returning home, I was scheduled to go back to Kaiser for a follow-up appointment. I got a blowout at a salon near my apartment and dressed myself as if I was going to a board meeting (a reaction to weeks spent in hospital gowns). I felt slightly more like myself. My mom picked me up, and together we went to my very first heart failure patient appointment.
After the basic protocol of measuring my height, weight (I lost twenty pounds in two weeks, a small win?), blood pressure, and heart rate, I sat and waited with my visibly concerned mom. Abruptly, a nurse who I’d never met and had no history working on my case, came into the room and stated, “I don’t care what you need to do - quit your job, go to rehab, whatever it takes - but you have to stop drinking.”
As the nurse sat down and started typing into the computer, I asked him to clarify his statement. I said that I knew that I was supposed to stop drinking for the foreseeable future, but that I was not an alcoholic so quitting work or entering a program wasn’t necessary for sobriety. I looked over to my mother, who grew up with an abusive alcoholic parent, and registered the pain on her face.
Was the nurse suggesting that I had done this to myself? That the root of the cardiac arrest was from alcohol? Why was this not brought up before now? How much alcohol does it take to induce sudden cardiac arrest? Was this all my fault?
Once home, I called my Kaiser cardiologist. The doctor explained to me that my nurse adopted the typical reasoning for someone my age (39 years old) experiencing sudden cardiac arrest - either alcohol consumption (a fifth of liquor per day for five plus years) or drug abuse (cocaine or meth). With no drugs or alcohol in my system, no family history of heart failure, and no obvious preceding symptoms, it was apparently easiest to blame substance abuse. Despite having no evidence to support that conclusion.
The physician profusely apologized for the nurse’s assumption, and shifted focus to the litany of things I’d have to go through in the next six months to improve my cardiac health. When I pressed him about other possible causes, he told me firmly that we would never know with certainty, that identifying the cause didn't particularly matter, and that my focus should be on recovery.
Unfortunately, the nurse wasn’t the only person who made the assumption that I must have done this to myself via substance abuse. My new primary care physician, who I’d never met before, asked me if I was a meth-head (verbatim) and said if not, that I must have a severe Type A personality, and should learn to meditate. Uh, thanks?
While I understand practically how these assumptions formed, it was very difficult to process. I started to question myself. Was I somehow drinking far more than I realized? I’m not and never have been a drug user, but maybe I was exposed to something unknowingly? I’d been out more than usual celebrating my birthday the week before my cardiac arrest. Did someone slip something into my drink at a bar? Would I ever know why this happened? Without any other explanation, I felt helpless, hopeless, and very harshly judged.
Work
Confused about the origins of my ordeal, and still slightly disoriented, I went back to work after two-and-a-half weeks. My physicians advised me to take a few months off, but I couldn’t wait to get back. I craved routine and the chance to prove that I was still myself after this horrific ordeal. There’s only so much rom-com, Bravo, and Bachelor in Paradise one can take before the brain begins to atrophy. I decided that work would be my refuge.
My first day at the office was an unexpectedly bright one - nonstop hugs from my team, flowers and cards, running around my warehouse in a tailored blazer and four-inch heels, and an impromptu interview with a radio station about the effects of the pandemic on my industry. No one would have known that weeks prior, I was clinically dead.
The next days were not so easy. One of my many heart failure medications, Metoprolol (a beta-blocker), made it so that I felt fine one moment, and unable to continue with my day the next. The effect is akin to powering through the day with a leash around your neck held by the medication. Once it’s yanked, you have to go home and rest. In light of this, I decided to keep my schedule to three days per week in the office, and work from home the other two. This decision was a bit crushing for someone who loves working with a team, but a wiser choice than overdoing it and winding up back in the hospital.
My team was extraordinary throughout this period. The owner of my company, Mike Seramin, and our COO, Jose Rodriguez, shouldered enormous additional responsibilities without ever once questioning my ability to continue leading. At a time when I had very little left to give and was facing enormous uncertainty, they provided unwavering support and ensured that my professional life was one thing I didn't have to worry about losing. I will never forget that kindness.
Processing unexperienced trauma
At the same time that I was embarking on my cardiac adventure, Better Call Saul protagonist, Bob Odenkirk, had a massive heart attack on-set. It took eighteen minutes for Odenkirk to regain a pulse. If he hadn’t been with other people, he wouldn’t have survived. Of the experience, co-star Rhea Seehorn said, “that’s its own weirdness. You didn’t have a near death experience - you’re told you had one.” This statement was an astute observation that I came to lean on.
My friends, family, and colleagues experienced a trauma that I did not. I couldn’t remember what happened during the incident, or a few days before and after. I was constantly experiencing people tearing up, or even sobbing, mid-conversation with me. I felt guilty. I knew I’d been the source of so much pain and uncertainty, but I couldn’t identify with it for the exact reason that Seehorn articulated - because it didn’t happen to me (consciously at least), I was told it happened to me.
Intellectually, I understood that I had been in the hospital. I could see my scars and feel my weakened heart, but I couldn’t identify with it. It was like waking up from a dream into a parallel universe. I still struggle with this part years later. I feel a great deal of shame for putting my loved ones and team at work through this ordeal, even if it wasn’t something I chose or could control.
In January 2024, my dad became seriously ill with bilateral pneumonia. We exchanged a series of texts about his illness and my cardiac arrest, characteristically alternating medical speculation with gallows humor. After teasing me for playing the "dead card," he wrote simply, "Don't die on me again." My father is an exceptionally reserved man, and those five words revealed more about how deeply my arrest affected him than anything he'd said in the preceding two years. He was facing his own mortality, yet the fear of losing me was still very much with him.
I died
In the months following my cardiac arrest, I started regularly telling people, "I died." I'd throw it out there casually to new hires and at dinner parties. The reactions varied, but it got my point across swiftly every time. I didn't yet have the vocabulary or understanding to explain what had happened to me, so I used the words I knew would convey the magnitude of the event without having to get into the medical details.
I've since learned that many sudden cardiac arrest survivors resort to the same “I died” statement, particularly because most people assume we've had a heart attack. But while a heart attack can be fatal, cardiac arrest means your heart has completely stopped and you are clinically dead almost immediately. It's an entirely different experience, and one that is remarkably difficult to explain.
Although significant advances in resuscitation have improved survival over the past several decades, relatively little attention has been paid to what happens after someone survives. There are established systems of care for heart attacks, but the long-term physical, neurological, and psychological consequences of cardiac arrest are still not as well understood or addressed. As one physician recently put it, the pool of survivors is astonishingly small. This means that we lack comprehensive recovery protocols, research, and even a shared vocabulary for the emotions and symptoms that follow sudden cardiac arrest. And the consequences of that limited understanding extend well beyond medical care. In fact, while most life insurance policies cover heart attacks, cardiac arrest is not recognized because so few have ever qualified.
Another significant difference between cardiac arrest and many other heart conditions is the fallout from having your circulation stop entirely. Our bodies are not meant to be turned off and then on again. We do not simply reboot like a computer.
When the brain is deprived of oxygen, injury begins within minutes. This means that even if you emerge from cardiac arrest with most of your brain function intact, there can still be significant consequences. Survivors may experience a menagerie of issues beyond the heart itself, including reduced cognitive function, difficulty learning new concepts, insomnia, memory loss, extreme fatigue, depression, agitation, hypervigilance, anxiety, difficulty concentrating, brain fog, and a loss of independence.
We need a much better understanding of the consequences of cardiac arrest beyond the heart itself, along with more comprehensive support for survivors after they leave the hospital. Surviving cardiac arrest and recovering from it are two very different things. When I left the hospital, I was given pamphlets on heart attack recovery. When I had surgery, I was put on a heart attack patient's diet. The difference matters, and I hope to be helpful in finding solutions here.
Health insurance switch
Underwhelmed by my experience at Kaiser, I decided to switch health insurance when open enrollment came around in December. I wanted to go back to CPMC, as the physicians who saved my life in the ICU seemingly took a more academic interest in my peculiar case. I wanted answers about the cause of my cardiac arrest, and perhaps CPMC could give them to me.
To put my mind at ease in the meantime, the owner of my company arranged a phone call with his friend, Brandon Bongar, who specializes in cardiac medical devices. Brandon was extraordinarily generous with his time, walking me through his understanding of sudden cardiac arrest, my defibrillator implantation, potential future surgeries, and the symptoms I was experiencing. At the end of our conversation, he recommended I see a physician he frequently worked with in the operating room, renowned CPMC electrophysiologist Dr. Richard Hongo.
I spent the next few months desperately trying to get an appointment with Dr. Hongo. When I first called in January, I was told that the doctor had no appointments until April. I enlisted everyone I knew who was connected to Dr. Hongo or CPMC to help me get on his radar. Finally, I secured an appointment at the end of February. Victory!
Stanford
Since I hadn’t been under the care of my team at Kaiser in months, and my primary care physician did not want to be responsible for monitoring my heart medications, I took up an offer from my health insurance to get a second opinion before my appointment with Dr. Hongo. I chose a cardiologist at Stanford (I didn’t understand at the time that I would need both a cardiologist for my heart medications and a heart transplant if warranted, and an electrophysiologist for any potential future defibrillator-related surgeries).
The Stanford appointment felt like a fact-finding mission. A resident asked me questions for half an hour, and then had a device technician come to “interrogate my defibrillator.” A cart was wheeled into my exam room with a laptop and other technical equipment. The technician put a strap around my neck to activate my defibrillator, and said that everything looked normal.
When the technician asked if I had any questions, I let her know that every day since my surgery, I experienced what felt like knocking coming from my heart. It was difficult to explain, but the first time it happened I presumed that the people around me could hear the knocking. I started tracking it, and observed that it happened around the same time every day, and occasionally more than once a day.
The technician thought about it for a moment, seemingly puzzled, before asserting that I had been through a lot, and the knocking likely wasn’t real - it was a phantom symptom from my trauma. I was frustrated by her answer at the time, but even more so when I later found out that the knocking was not phantom - but caused by my Kaiser surgeon puncturing the wall of my heart with the defibrillator wire when he inserted my device. This was one of many times where a symptom was reduced to a figment of my imagination, when in reality there was an actual problem. A reminder to always aggressively advocate for yourself in the medical setting.
After the technician left, the cardiology resident reappeared with her attending. The attending reiterated that I was an unusual case between my age and lack of symptoms both before and after the sudden cardiac arrest. I had no chest pain, no fatigue, no swelling around my ankles or throat. The day before my arrest, and in the days following my surgery, I was walking up San Francisco hills without shortness of breath. All symptoms I should have as a heart failure patient, yet I had none.
The cardiologist offered that I could have been born with reduced heart function, and been able to adapt to it (until I couldn’t). The doctor felt that there was a genetic component, and that I should do testing to find out more about a congenital cause. I left with more questions than answers and another medication, Jardiance, to add to my daily litany of pills.
Valentine’s Day
In anticipation of my appointment with Dr. Hongo, my primary care physician ordered an echocardiogram. The amount of blood your heart is pumping to your body, called the ejection fraction, is measured this way.
The test uses soundwaves to produce images of your heart. A cardiac sonographer spreads (freezing cold) gel on an ultrasound wand and firmly probes the skin around your heart. The wand records the sound wave echoes from your heart, and then a computer converts the echoes into moving images on a monitor. Something called Doppler signals measure the speed and direction of blood flow, creating different colors for different measurements on the monitor.
I didn’t understand at the time what the test was for exactly, but I was amused that it was scheduled on Valentine’s Day, a day historically marked by hearts. My amusement quickly faded when I found out the following day that there had been no improvement in my heart or ejection fraction since I left the hospital in October.
My ejection fraction was around thirty-percent when I was discharged in October, and four months later, nothing changed. This meant that my organs were not receiving adequate blood supply, and therefore not functioning optimally. It also meant that I wasn’t healing.
I called my mom from work hysterically crying. For the first time, the magnitude of my heart failure seemed real. This wasn’t a mistake. It really happened, and was still happening. I didn’t know why, or what else I could do to fix it. I was taking my medications religiously, I was eating healthy and taking short daily walks, I hadn’t had a sip of alcohol in four months, I rested at home at least three days per week.
The thought that I might not ever return to my previous life hit me like a ton of bricks.
Dr. Hongo
A week later, I made my way back to CPMC for the first time since October. Driving into the parking structure was emotional. I imagined my parents and brother visiting the same parking lot and going through the same motions when I was in the ICU. I felt strong and capable to be there alone, but scared about what I was going to learn about my prognosis.
My fear subsided when Dr. Hongo walked into my exam room. Hongo calmly took a seat across from me, and asked me if I understood what happened to me. “Truthfully, not really,” I replied. For the next half hour, Dr. Hongo explained what happened to me clinically, emphasizing several times that my case was miraculous. At the conclusion, Hongo plainly stated, “you had a less than five-percent chance of survival. Every single thing had to go right for you to be here.”
Dr. Hongo also had a different idea of what led to my sudden cardiac arrest, and what we could do about my lack of improvement. Hongo clearly articulated that four things could have caused my arrest - (1) drugs, (2) alcohol, (3) genetics, or (4) viral myocarditis. Toxicology screenings conducted during my hospitalization and the amount of alcohol I was consuming before the arrest, coupled with the lack of improvement since the arrest eliminated the first two options from his standpoint. Given that none of my relatives experienced sudden cardiac arrest, even if genetic testing indicated that there was a predisposition, we wouldn’t be able to definitively point to that as the cause.
This left the fourth option, viral myocarditis, as the likely culprit. I’ve spent a great deal of time trying to intimately understand viral myocarditis. I’ve asked physician friends, read medical journals, pored over Wikipedia and the Mayo Clinic’s website. The best layman’s interpretation I’ve come up with (and agreed to by my cardiologist) is that at some point in my life, I got a virus (likely my month-long bout with COVID in early 2020), and the virus inflamed my heart. After the virus cleared up, the stress and inflammation in my heart remained and steadily increased, scrambling the electrical impulses that tell my heart to beat and pump blood, and eventually causing my heart to stop.
Dr. Hongo’s solution to remedy my resulting low ejection fraction and Left Bundle Branch Block (a blockage along the pathway that electrical impulses travel to make the heart beat) was a second surgery. Hongo would remove the defibrillator and single wire going into my heart, and install a pacemaker with three wires - two of which would regulate and synchronize the pacing between my ventricles, the third would restart my heart if it stopped again.
Hongo explained that I was lucky, because my MRI in October showed no scarring in my heart. This meant that if all went well, I could make a full recovery - with the real possibility of going off my meds and removing the pacemaker entirely someday. I was on board, and requested to have the surgery as soon as possible.
I left that appointment with something I hadn't felt in months: genuine optimism. Dr. Hongo took the time to answer my questions, offer a plausible explanation for what happened, and outline a plan for my recovery. His command of the medicine was evident, but what meant even more to me was that he treated me as a person, not simply a complicated medical case. He seemed to understand that I wasn't just trying to repair my heart; I was desperately trying to reclaim my life. I was still frightened and uncertain about my prognosis, but profoundly grateful to have found a physician I trusted.
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Advanced heart failure
I was excited (as excited as one can possibly be under the circumstances) to meet my CPMC cardiologist, Dr. Yu Xie, because she was one of the cardiologists during my initial ICU hospitalization back in October. She had helped care for me during the most precarious days of my life, when I was largely unaware of the extraordinary efforts being made to keep me alive. I wanted the opportunity to thank her for that care.
When I arrived for my appointment, the receptionist pointed out that I must be special because rather than regular Cardiology, I was in the Center for Advanced Heart Failure Therapies. I quickly realized that by “special” she meant that my case was extra severe.
The appointment with Dr. Xie was relatively quick and painless. We talked about my hospital stay, and she casually reminisced about the time I woke up from a coma and aggressively pulled out all of my tubes. I was horrified, but she laughed and said that it was a great sign of my potential to recover at the time, noting that it was clear I was a “take the bull by the horns kind of person.”
Dr. Xie explained that in addition to my pacemaker surgery with Dr. Hongo, we would be going guns blazing on the pharmaceutical front as well. The goal was to get to the maximum dosage on all of my medications as quickly and safely as possible. I didn't yet appreciate how much of my recovery would depend on the sustained, meticulous work of managing my heart failure, monitoring my progress, and adjusting medications as my condition evolved.
Over the following years, Dr. Xie would help me navigate not only the recovery of my heart function, but also the delicate balance between effective treatment and quality of life. Though going on more meds was difficult to hear, I was grateful that I now had two highly skilled physicians working to solve the problem I’d felt so alone in for five months.
Before we wrapped up the appointment, Dr. Xie asked if I had any further questions. It hadn’t occurred to me before that moment, but noticing that Dr. Xie was visibly very pregnant, I asked if my condition would affect my own ability to have children. Dr. Xie replied that pregnancy is very hard on the heart and that one of the medications I was on, Entresto, would be fatal to a fetus. I would have to go on a different, less effective medication if I wanted to get pregnant. Dr. Xie advised that it would be at least two years before I could consider pregnancy.
I left the hospital a bit addled. Waiting at least two years to have a child when you’re already thirty-nine is not ideal. I wasn’t ready to have children yet, but having the possibility abruptly removed was difficult to process. I subsequently looked into freezing my eggs, but did not have the best experience. At appointments years apart - first at Pacific Fertility Center, then at UCSF - fertility specialists spent much of our time admonishing me for not having frozen my eggs or created an embryo earlier, without once asking why I hadn't done so. Hindsight, I can assure them, is not a treatment plan.
Given the plethora of beautifully written personal accounts of fertility and this site’s focus on cardiac health, I will leave the subject there.
Surgery II
My pacemaker surgery was quickly scheduled for March 25th. Dr. Hongo outlined in detail what would happen during the procedure, including potential complications. The scariest possibility was that when Dr. Hongo removed the defibrillator lead that had perforated the wall of my heart from the first surgery, uncontrollable bleeding could trigger open heart surgery. There would be a cardiothoracic surgeon in the operating room on standby in case this happened (I later spoke on a panel with that surgeon - Dr. Brett Sheridan, which was surreal to say the least).
Before October, I’d never had surgery in my life. I was in a pharmaceutical cloud for my first heart surgery, but for my second I was keenly aware of what was about to happen. In the weeks leading up to surgery, I found myself strangely stoic. Though the likelihood of death wasn't significant, I wanted to make peace with it anyway. I thought a lot about what mattered most to me, and came to the easy conclusion that it was love. I became calmly focused on making sure that everyone important to me knew that I loved them.
The night before my surgery, deciding last-minute that I didn’t want to be alone that evening, my brother and his wife graciously drove up from their home in Los Gatos at midnight to stay with me. Five short hours later, my dad came to pick me up at 5AM. We met the rest of my family and my boyfriend at the hospital. As we sat together in the waiting room, I looked around at the other families and wondered if all of our surgeries would be successful.
That stoicism evaporated the moment they called my name for surgery. As I changed into a hospital gown, everything began to feel dreamlike. Why was I agreeing to this? Could I leave? Was I about to die? Would I wake up with a long incision down the center of my torso? Would they be able to stop the bleeding from the hole in my heart?
The nurse who drew my blood accidentally nicked my arm with the needle, spraying blood all over my bright white hospital blanket. I didn’t notice or care. I was in a complete daze. When my mom entered the room, I told her that I wanted to go home. She calmly smiled, held my hand, and said that everything was going to be okay.
My anesthesiologist and Dr. Hongo both came to visit me pre-surgery. I’d never been under general anesthesia before, so the process was explained. Dr. Hongo examined the three-inch jagged scar from my first surgery and announced that he was going to cut it out to make a prettier one, which made me laugh.
Once in the operating room, I moved from my gurney onto an ice cold surgical slab. Two nurses were chatting above me, when one mentioned the ECMO machine in the room. Recalling that ECMO is a form of life support where a machine oxygenates your blood outside of your body, I asked if they thought I was going to need it. They said they hoped not.
If I wasn’t terrified before, I certainly was then. The anesthesiologist must have sensed my angst and put me out immediately without the infamous counting backward technique you see on medical dramas.
What was supposed to be a three-hour surgery took eight hours. From what I understand, there was significant scarring around the defibrillator wire in my heart that required Dr. Hongo’s painstaking precision with a laser to remove.
It would be an understatement to say that it was a difficult eight hours for my family. There are monitors in the waiting room that indicate whether a patient is still in surgery or in recovery. When my screen finally switched to recovery, five hours later than it was supposed to, my dad took a picture and posted it to Instagram to let people know that I made it. And without open heart surgery. Phew!
I awoke from the anesthesia in a lot of pain. The nurses administered fentanyl to try and ease the discomfort a few times, but I couldn’t sense any change. My family was allowed to individually come say hello, but I was in such a deep fog I could barely speak. I wasn’t allowed to eat before my surgery, and was starving. By the time my nurses were able to take my dinner order, the cafeteria responded that grilled cheese was not allowed for heart attack patients (insert displeased face emoji here - even my favorite hospital had no protocol for cardiac arrest patients rather than heart attack patients) and that they were now closed. A hospital room wasn’t available yet, so I stayed in the recovery area for a few hours, desperately wishing I could slip back into the comfortable anesthetic haze rather than this bizarre in-between space of sleep, hunger, and lucidity.
Once situated in my room and more alert, I convinced my nurse to give me a vending machine ham and cheese sandwich, applesauce, and saltine crackers, which I promptly threw up (a common side effect of anesthesia). Undeterred, I continued eating crackers throughout the night with similarly unfortunate results. I was drowsy, but couldn’t seem to fall asleep. I watched movies, texted silly memes with my dad, and wondered whether my phone would die without a charger (a reminder to bring one for future overnight stays).
By the time the sun came up over the cityscape outside my hospital window, the terror of the previous day had receded. What remained was immense gratitude for Dr. Hongo and his team, whose extraordinary skill and meticulous care brought me safely through eight hours of surgery. I’d placed my failing heart in his hands, and he’d given it a chance to heal. I remain deeply indebted to him.
Recovery II
I was released after I successfully completed two laps around the hospital floor and had my pacemaker calibrated so that I wouldn’t feel the electrical pulses or experience hiccups (an odd side effect caused when a lead stimulates nerves outside of the heart near the diaphragm). My mom picked me up, and my brother and boyfriend met us at my apartment. I wasn’t allowed to sweat due to the risk of infection at the incision site, so the guys put together a suitcase-sized air conditioner in my bedroom to keep me cool. It was also critical that I not move my left arm, which had been placed in a sling at the hospital. I barricaded myself with pillows to stay in place and let the hum of the A/C soothe me to sleep.
I awoke from my nap to the sweetest surprise for dinner: a delivery of my favorite Chinese chicken salad from Comforts, brie cheese, Acme baguette, and Thomas Keller chocolate. My friend Maria generously pooled together a group of our friends to participate in something called Meal Train. The service allows everyone to sign up for a day and then send you DoorDash meals on their allotted day. I had Spruce, A16, Cultivar, Souvla, China Live, Causwells, Tacolicious, and many other delicious indulgences from San Francisco’s best restaurants. Beyond the thoughtful dinners Meal Train provided, it also gave me something to look forward to every day as I recovered. My friends’ generosity still brings a smile to my face years later.
At the end of the week, I went to a check-up with my cardiologist, Dr. Xie. The appointment was routine, but offered me the chance to see an x-ray of my new hardware. I was absolutely fascinated by the three wires and pulse generator that resembled the Millennium Falcon from Star Wars. I was officially bionic. I named my electronic protector Athena.
Rearview mirror... not so fast
Finally, I could start healing and begin to put all of this in the rearview mirror. After a week, I was at work, and a few weeks after that I was in the office full-time rather than three days. Things were looking up.
A month after my surgery, I had a follow-up with the Electrophysiology Department. A technician ran several tests on my pacemaker, speeding up and slowing down my heart from a laptop across the room (a surreal experience).
Technician: You have four years left on your pacemaker battery, so that’s good news.
Me: Good news? I had eight years a month ago, what is happening?
Technician: Your pacing is probably requiring more battery power than expected.
Me: What?! Why? Does that mean something is wrong with the pacemaker or with my heart?
Technician: I’m not sure. Schedule an appointment with Dr. Hongo.
This moment was a difficult one. I thought that the medical questions had been answered and the actual healing had begun. If my heart was requiring more power to operate properly, did that mean the prognosis wasn’t as positive as my physicians expected? And if the battery was rapidly draining, with only one month since my last surgery, I was already facing another surgery (every time my battery drains for as long as I have my pacemaker, I will have surgery to replace the pager-size portion of the pacemaker - but the leads will stay in place). I felt crushed.
I immediately scheduled an appointment with Dr. Hongo for May 9th. In the meantime, several things happened. On May 6th, I could officially raise my left arm for the first time (yay!). I hired two amazing new employees (yay!). And I learned that a member of my executive team had been embezzling from our company for years (not yay). In the course of working over the weekend to handle the aftermath of the embezzlement, I forgot to pick up my Metoprolol (beta-blocker medication) from the pharmacy. This meant that I would miss a dose on Monday I realized - but I’d pick it up after work. No big deal, I thought at the time. I’d never missed a dose of any of my medications before, so I didn't think it would cause much harm. I was wrong.
The afternoon of May 9th, I went to my appointment with Dr. Hongo to determine the root of my draining battery. Again, I was hooked up to a computer across the room that sped up and slowed down my heart rate, this time much more aggressively. Dr. Hongo tested different configurations to improve the battery life, but I kept pressing him to explain exactly what was wrong with my pacemaker, or my heart, to cause it to drain so quickly. Finally, he turned to me and asked what was more important: avoiding a relatively simple surgery to replace the battery sooner than anticipated, or fixing my heart? The answer was crystal clear. We settled on a configuration that did not make me hiccup and gave me six-and-a-half years of battery rather than four.
My mom dropped me off at home (still unable to drive medically), and I changed into gym clothes to walk to the pharmacy a couple of miles away. After successfully obtaining my Metoprolol, I started my journey back home. There is an infamously steep hill on Fillmore Street between the pharmacy and my apartment. The views of the Golden Gate Bridge and bay are absolutely breathtaking at various points along the hill. Typically, I turn around several times during the walk to take in the panorama. This time, I charged directly up the hill without stopping, anxious to get home and take my meds.
Dead again?
Everything converged at the crest of Fillmore Street. Without any understanding that this might happen, my defibrillator fired. This felt akin to a horse with a hoof made of lightning kicking you with all his might squarely in the back. The electricity rippled through my body, disorienting my mind. A metallic taste filled my mouth, and I fell to the ground.
This happened six times in a row over the course of five minutes. I screamed as if my life depended on it, because I thought it did. The pain was excruciating, but the idea that I might be experiencing sudden cardiac arrest again was infinitely worse. Last time, I was unconscious, but this time I was awake and thought that I was experiencing my death. I pulled my phone out of my pocket between shocks to call 911. In a split-second decision, I called my mom instead. I summoned every ounce of energy and control over my voice that I could, and whimpered into the phone that I was dying again, that I was so sorry, and that I loved her.
At that moment, my defibrillator fired again, and I dropped my phone. Half a dozen people had congregated around me, and one of them picked up my phone to tell my mom where we were and that another person was calling 911. The 911 operator asked the stranger who called if I had been doing recreational drugs. I couldn’t explain that it was my pacemaker, because the words wouldn’t leave my mouth fast enough between shocks.
A doctor who heard my screams from her apartment nearby rushed down to the street. She seemed to understand what was happening, and said I needed to lie down. I was worried that the electrical jolts would cause me to slam my head on the pavement. She held my head so that wouldn’t happen, and tried to calm the people around us, who were understandably confused by my obvious pain and blood-curdling screams every time the defibrillator shocked me. By the time the ambulance arrived, the shocks subsided. My mom arrived at the intersection moments later, just in time to grab my hand for a moment before following us to CPMC.
The ER doctor asked me questions while nurses prepped my arms with IVs in the event that I required surgery. The doctor asked me several times if I was sure the defibrillator had actually gone off, which was frustrating to put it mildly. (Particularly when I later learned that it fired six times, not just once). I was thirsty from my four mile walk, uncomfortable from the latest round of needle pokes, and still coming off of the adrenaline rush of the experience. But I was alive and safe.
Dr. Hongo was serendipitously still in the hospital, and came to check my pacemaker. He explained again that ventricular fibrillation causes the heart to quiver rather than pump blood (I like to think of it as your heart deciding to have an impromptu dance party rather than do its job). Pacemakers and defibrillators are not yet sophisticated enough to determine the difference between this type of quivering and a simple high heart rate.
When I missed the dose of Metoprolol and decided to walk four miles and then straight up a steep hill at full-throttle, my heart rate jumped to two hundred beats per minute. This spike triggered the defibrillator to fire, and then the resulting adrenaline kept my heart rate high, causing the subsequent shocks. If I’d had another cardiac arrest, I would have passed out before the shock and not felt it. I didn’t have this information at the time, but now understand that this is called an "inappropriate defibrillation."
Though Dr. Hongo determined that I did not suffer another cardiac arrest, he wanted to keep me in the hospital overnight for observation. There weren’t any free rooms available, so I stayed in the ER. Too noisy to sleep, I passed the time watching Disney movies I’d never seen on the hospital television - Frozen, Tangled, and Brave (twice). For a few hours, those fantastical worlds provided a welcome reprieve from the ER.
In the morning, a large group of cardiology residents and fellows gathered around my bed. They explained that I would have to make a concerted effort to not miss a single dose of Metoprolol going forward, and that I should avoid vigorous exercise. If my heart rate got to 150, I would have to stop whatever I was doing until it lowered. I didn’t have an Apple Watch (or any other monitor) at the time, but made a mental note to buy one as soon as I got out of the hospital.
Before leaving, one of the doctors turned and said,
Liz, you are like the San Francisco Muni 22 Bus Line that infamously veers off course for a few blocks on its route because it doesn’t have the ability to go straight up Fillmore Street. You were a sports car before the cardiac arrest and could go up Fillmore Street no problem. Now you’re the bus, and have to go around the steep hill.
Charming analogy, doc…
Fun fact: Two months later, determined to not let myself be the bus, I summoned the courage to walk up the hill. I took breaks along the way, but I made it triumphantly to the top. Still a sports car after all.
The breakup
Around this time, I made the extremely difficult decision to end my relationship. Both of us were struggling mentally, and I was having a hard time focusing on my own recovery while also worrying about his. I needed to be alone to process what happened.
Breaking up with someone who saved your life feels cruel, but I think that it was the best move for both of us to gain the space necessary to reflect and nourish ourselves. There aren’t words strong enough to properly express my gratitude for him, or the pain I feel for putting him through the nightmarish ordeal.
A heart transplant? And PTSD?
In June, I returned to CPMC for an echocardiogram to measure my heart’s progress since the surgery. I was warned that my ejection fraction would likely be close to 30% still, because the pacemaker would take around six months to make significant improvements.
A few days later, I met with cardiologist Dr. Ranjan Ray, who was filling-in for Dr. Xie’s maternity leave. We decided to increase my Metoprolol from 100mg to 150mg in order to lower my heart rate in the wake of the inappropriate defibrillator shocks.
I was told that I should start considering the fact that I may need a heart transplant if the synchronized pacing from my pacemaker was unsuccessful at raising my ejection fraction. I was referred to a psychiatrist to help prepare me for that possibility, and to address the likely PTSD from the events of the last seven months.
Instead of going to work after the appointment, I went back home and climbed into bed, pulling the covers over my head. I felt numb. A heart transplant? PTSD? When would the hits stop coming, I wondered. Was I going to make it through this?
Good news - finally
After a few hours spent lethargically scrolling on my phone, a notification from my healthcare app popped up, announcing that the results of my latest echocardiogram were ready. I begrudgingly opened the app, bracing myself for more bad news.
Just as I clicked on the results, and saw that my ejection fraction had gone from 30% to 56%, Dr. Ray called. “It’s another miracle! Your ejection fraction is in the normal range. You are technically no longer in heart failure.”
In total disbelief, I jumped out of bed and started sobbing. Between tears of joy, I pumped my fist in the air triumphantly shouting over and over again, “I’M GOING TO LIVE!! I’M GOING TO LIVE!!!!”
the Gym
My next ejection fraction measurement was slightly lower, but popped back into place by the subsequent test in August. While my ejection fraction was significantly improved, my symptoms lingered. I couldn’t even do a load of laundry without my heart rate spiking.
Realizing that I was flirting with another false defibrillation if I didn’t get my heart rate lower, I joined a gym and began going five days a week. I checked my Apple Watch almost constantly to make sure that I didn’t exceed 150 bpm, which felt like its own traumatic experience, but I didn’t let the fear stop me.
This experiment worked, and six months later, my resting heart rate went from 100 to 75 bpm, and my ejection fraction was 66%, which is effectively perfect. I felt like the luckiest person in the world.
Titrating medications
Working out vastly improved my heart, but I began noticing that I was not losing any weight. This prompted me to research the possible side effects of my medications. I was still on an exceptionally high dose of Metoprolol, and none of my other medications had decreased since my cardiologist maxed my dosages prior to my pacemaker surgery.
It was now 2023, and beyond the weight stagnation, I was also still feeling the pull of the energy leash. I met with my cardiologist, Dr. Xie, and strongly advocated for decreasing my medications. She was initially reluctant, but we ultimately agreed to begin carefully titrating my dosages, recognizing that my mental health and quality of life also needed to be factored into the pharmaceutical equation.
Over the last three years, with Dr. Xie's guidance, I've painstakingly titrated to the lowest dosage of each medication, one by one to be clear about the cause of any possible regression in my ejection fraction. Though I will never be entirely free of Metoprolol due to studies suggesting a high likelihood of relapse, I went from 150mg to 12.5mg daily, which has been a small win.
therapy
At this point, with my health much improved and technically no longer in heart failure, I decided to create this website as a resource for survivors and their families. When I mentioned the idea to Dr. Hongo, he enthusiastically encouraged me to pursue it. A Gloria Steinem quote lingered in my mind as a propellant, “the final stage of healing is using what happened to you to help others. ”
I took my laptop to my family’s vacation home by the beach in Capitola, and the initial pages poured out of me. When I got to the viral myocarditis section, realizing how important it was to capture the medical terminology accurately, I decided to look up my medical records for the first time since the arrest.
Expecting to quickly find the information I needed, I was taken aback by the extent of the records in my online patient portal. I spent the next day reading every single word.
I was horrified by what I learned of my hospital stay: how close I was to death, the assumption of alcohol abuse, the restraints and cries for my mom, my desperate attempts to escape. Overwhelmed, I closed my laptop, unable to revisit or finish the website until three years later.
I realized then that I might need some help navigating what happened to me. I took the cardiology department up on its offer of a psychiatric referral and quickly scheduled an appointment with Dr. Luke Valentine Lee, whose middle name offered another charming coincidence involving the heart.
My work with Dr. Lee has been profoundly helpful, though our weekly sessions are rarely devoted exclusively to my cardiac arrest. Early on, we explored the loss of agency I experienced in the aftermath, along with the unsettling sense of voyeurism I felt from people who wanted to know the intimate details of what had happened to me. Anxiety and periods of situational depression have also been themes, alongside plenty of things I needed to work through long before October 18, 2021.
For the past several years, Dr. Lee and I have met for an hour each week. In addition to psychotherapy, he helps coordinate my medications across multiple prescribing physicians, interpret medical terminology, review hospital records, and advocate for my care. I cannot overstate how much his sustained investment in my well-being has meant to me, and I would strongly encourage other cardiac arrest survivors to seek out a psychiatrist who provides psychotherapy.
Through our work together, I've learned that being extraordinarily grateful to be alive does not preclude being angry, frightened, or deeply sad about what happened. Nor does surviving something miraculous mean that everything that follows has to feel miraculous. Five years later, I am still working through some of it. And I suspect I always will be, to some degree.
The First Responders
As I pieced together what had happened to me, one part of the story remained unfinished. Although I'd had the opportunity to thank my cardiologist, I'd never met the people who fought to keep me alive long enough to reach the hospital.
After requesting and reading the San Francisco Fire Department's report from October 18th, I became particularly determined to find the paramedic who had made the decision to continue resuscitating me for twenty-three minutes. His name was Logan Rasmussen, and I couldn't stop thinking about the significance of that decision. Had he decided to stop, I would not be here today.
I found a form on the SFFD website and submitted a request to contact him. Hearing nothing back, I tried reaching out through social media. More than two years later, I finally received a response on Instagram. The department generously offered to arrange a meeting, not just with Logan, but with the entire team of first responders who had been at my home that day.
In the days leading up to the meeting, I became incredibly nervous. I’d wanted to thank these people for years, but suddenly the prospect of coming face-to-face with the people who had seen me lifeless on my living room floor felt overwhelming. How exactly does one prepare to meet the people who brought them back from the dead?
I decided Bob’s donuts and handwritten thank-you notes were a reasonable start. When I arrived at Station 49 in July 2025, I was still nervous. The firefighters and paramedics who had worked on me that day were gathered with several of their captains, and for the first time, the names and accounts I'd studied in my medical records became actual people standing in front of me. People who remembered a version of me that I would never remember myself.
What I hadn't anticipated was how meaningful the meeting would be for them, too. Each of the responders shared that they had never been personally thanked by a survivor before. Even more astonishingly, none of them knew whether I lived. Given the extraordinary length of time I had been without a pulse, they assumed that even if I survived, I would likely have significant brain damage. And there I was, standing in front of them, healthy, running companies, living a beautiful life, and remarkably still intact.
They shared something else that has stayed with me. Even while I was pulseless, they sensed that I was fighting to come back. They told me that somehow, despite being completely unresponsive, I seemed determined to survive.
I have no memory of those twenty-three minutes. Everything I know about them comes from medical records and the accounts of others. Hearing their account of a fight I cannot remember was both overwhelming and deeply moving.
In my notes to them, I wrote,
Thank you for saving my life on October 18, 2021. I'm here today because of your heroic efforts, the critical decisions you made in those moments, and your exceptional skill.
Thank you for fighting for me when I could not fight for myself, and for not giving up on me.
Your dedication to our community makes a difference in more lives than you may ever know.
With deepest gratitude,
Liz Curtis
For nearly four years, they hadn't known how my story ended. And for nearly four years, I hadn't had the opportunity to thank or hug the people who made it possible for my story to continue. Finally meeting them, hearing their memories of that day, and having the chance to embrace them was one of the most meaningful experiences of my recovery.
What I learned
The first night I spent alone after my cardiac arrest, I went down a rabbit hole reading posts in a Facebook group for survivors. I was struck by how many people expressed anger, helplessness, and a sense of "why me?" Their feelings were entirely understandable, particularly given that many were dealing with far more devastating physical and neurological consequences than I was.
But something about reading those stories prompted a decision that would shape my recovery. I would not allow what happened to me to define who I was. I would not view myself as a victim. I would do everything within my power to heal and reclaim my life. As Viktor Frankl explores in Man's Search for Meaning, we cannot always choose our circumstances, but we can choose how we respond to them.
This wasn't a declaration of fearlessness. Quite the opposite. I've spent an enormous amount of the last five years afraid. Afraid of medical procedures, of pushing myself physically, of what my heart might do next, of what I might learn about my own experience, of what people who I loved and admired would think of me. But I made the conscious decision to keep moving forward, often in spite of that fear.
I also recognize how extraordinarily fortunate I have been. My recovery was made possible by exceptional medical care, the love and support of my family, colleagues, and friends, and circumstances that aligned against overwhelming odds. Determination alone could never have accomplished that.
One of the more difficult lessons has been understanding how isolating recovery can be. You may feel profoundly alone in the aftermath of cardiac arrest. In some ways, you are. No matter how much love surrounds you, very few people can truly understand the experience of surviving something so rare and catastrophic. Pay attention to your mental health as carefully as your physical health, and don't hesitate to seek professional support. You do not have to carry this without the tools required to do so.
The people around you, your family, friends, partners, and caregivers, are navigating unfamiliar territory too. They have no handbook for how to love and support you after nearly losing you, just as you have no handbook for how to be the person who survived. You may misunderstand, disappoint, or hurt one another along the way. Be gentle with yourself and with them.
I cannot speak for the people who witnessed my cardiac arrest, but I know that my survival did not erase what they experienced. If you've witnessed someone's arrest, particularly if you attempted resuscitation, please seek support of your own, through therapy or whatever helps you process what happened, whether that person survived or not.
Beyond these larger lessons, there are a number of practical things I’ve learned:
Learn CPR and how to use an AED. My boyfriend began chest compressions before the paramedics arrived, and those precious minutes were critical to my survival. You never know when you might be the person who can save someone's life.
Ask your physician about getting an EKG. It's a simple, inexpensive test that could have detected my left bundle branch block before my arrest. This is something I intend to lobby for as part of routine physicals.
Take an active role in your medical care. Ask questions, request your records, and seek second opinions when something doesn't feel right. Please know that you do not have to recount the details of your cardiac arrest during a routine physical, Pap smear, or other appointment simply because a physician asks. Routine medical care should not require you to unexpectedly revisit your trauma, appointment after appointment. You can ask why a question is relevant to your care and decline to discuss details that aren't necessary. And to the physicians reading this: access to a patient's medical records does not mean they are prepared to revisit every detail with you. Please explain why you're asking and seek permission before proceeding.
Invest in a wearable heart rate monitor, and ask your physician what heart rate is safe for you. No one ever told me to monitor mine (that I recall). Had I known my heart rate was approaching 200 bpm on Fillmore Street, I would have stopped climbing and avoided six inappropriate defibrillator shocks. Since that day, my Apple Watch and I have become best friends.
Taking multiple medications every day comes with its own logistical challenges. Many pharmacies offer prescription delivery (Amazon has been reliable for me), and some services will even organize medications into packets by dose. I've also discovered some wonderfully practical pill cases over the years, my favorite organizes by AM/PM in one case, but allows you to remove a particular day's compartment if you are traveling for a short period (I use Zoski's version). Consider keeping a spare dose in your handbag/car/office for those occasions when you don't make it home as planned.
If you have a pacemaker, ask about breast ultrasound as an alternative to a traditional mammogram. I was warned that mammogram compression could dislodge my pacemaker leads.
You can never have too many pillows during recovery. Keeping my left arm from moving while the pacemaker leads settled into place was considerably easier with an elaborate pillow barricade.
Be diligent about sunscreen on your scar, even with clothes on.
Baby oil removes medical adhesive residue from your skin. An unexpectedly useful discovery after weeks of being covered in electrodes, tape, and bandages.
If your home pacemaker monitor produces an error code in the middle of the night, try unplugging it and plugging it back in. It may be the monitor rather than your pacemaker. I learned this after frantically calling the electrophysiologist on duty to announce that my pacemaker had broken. Apologies again, Dr. Hongo.
today
Exactly five years later, my heart function has remained normal. I still have a pacemaker, take daily medications, and contend with some lingering effects of the arrest. My life isn't precisely what it was before October 18, 2021, but it's an extraordinary life nonetheless. Perhaps even better than it might have been otherwise, although the cardiac arrest gets absolutely no credit for that.
I've never particularly identified with the idea that surviving something like this teaches you to appreciate life. I already loved mine. I loved my family and friends, my work, art, music, making elaborate meals, and the small pleasures of ordinary days. I wasn't waiting for a catastrophe to discover what mattered to me. I knew. I didn't need to die to learn how to live. What changed was my sense of security, not my love of being alive.
I continue to lead companies, volunteer, travel, spend time with the people I adore, fall in and out of love, create beautiful things, and pursue what brings me joy. I'm once again able to climb San Francisco's steep hills without pause or hesitation, and I'm actively taking steps toward a future that includes becoming a mother, something that once seemed medically out of reach.
A friend who is a nurse warned me early in my recovery that although I have no conscious memory of the arrest, my body would remember its anniversary. She encouraged me to be prepared for October 18th, and I've found her to be right. Even when I'm not consciously dwelling on what happened, the anniversary has a way of making itself felt through heightened emotions, hypervigilance, and a mostly irrational middle-of-the-night fear that it will happen again.
Nearly three years after closing my laptop, I returned to this website as the fifth anniversary of my arrest approached. I have reservations about publishing it. After everything I've built in my life, I don't particularly want to be defined publicly by the fact that I died. But this is the resource I desperately needed when it happened to me and couldn't find. Had I not survived, I fear my death might have been attributed to drug abuse or severe alcoholism rather than viral myocarditis. I would have wanted my family to know that the easiest diagnosis isn't necessarily the right one. Ultimately, those considerations outweigh my discomfort with sharing something so deeply personal.
As I finish writing this, I realize that I'm sitting in the very same chair at my dining room table where I collapsed five years ago today. This wasn't an intentional gesture of symbolism. It's simply where I have room to work in my apartment. The fact that I get to sit in that chair today and share my story is not lost on me.
I don't know why I survived when so many others do not, and I've stopped feeling that I need to find an explanation. I am extraordinarily fortunate to be here, and I intend to make the most of the time I've been given.
I still have things to do.
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