Charlie Rae's story

When people ask me what it is like to have SCAD, I give them one word.

Intruder.

It arrives without warning. No glass shattering from the windows you locked shut the night before. No door kicked ajar to alert the dog. No footsteps down the corridor. Not even an utter of a whisper. No sound.

How this intruder arrived at your home, you will never know. Nor will you ever see its face.

Only its shadow looming over yours along with its hands slowly gripping round your soft throat.

This intruder is not here for your money, your jewellery, your family heirlooms, or any of your possessions. It is here for one thing only. And you will remember it forever like your very own name as it cuts away at what it wants.

Your heart.

This is Spontaneous Coronary Artery Dissection. SCAD for short. A sudden tear in your heart that can cause heart attack, cardiac arrest, and even sudden death.

For many of you reading this, you very likely are a survivor. A survivor seasoned with courage and time. Or perhaps you have recently experienced SCAD feeling lost and very much alone in the dark. For others, you may be a supportive loved one wanting to know what SCAD is really all about. What it feels like. What to expect. How to support. Or maybe you are just curious.

Whatever the reasons that brought you here, I can assure you it is not by chance.

To which I say welcome to whoever you are, wherever you are. For each of us have been affected by a lethal intruder, SCAD, in some way. Making each of us one beating heart, one voice, and one family fighting to beat SCAD.

I share my story like any other survivor or loved one wanting to bring an awareness.

To make change. To be heard. To give hope. To defy the odds. And most importantly, to honour the voiceless. The victims we shall never forget. Mothers. Wives. Sisters. Husbands. Fathers. Brothers. Children. Lovers. Friends. All cruelly stolen by SCAD.

My SCAD

SCAD invaded my body in late of March 2017 only to pay another visit shortly in April 2017.

It was a Wednesday morning. I woke no different than any other ordinary day with a mental to-do list shuffling fast like a deck of cards. Work. Household chores. Need to feed the dog.  Boxes to begrudgingly unpack after moving into a new home with my children. And baskets upon baskets spilling over with clean washing to tend to. I’d fold the lonely, neglected clothes over a film. A Bill Nighy film, of course. Because, fact is, I really, really love Bill Nighy.

Little did I realise that this day would be one to come back and haunt me forever.

It all began with an unquenchable thirst no amount of water could satisfy. My body grew feverish inside and out. A heavy fatigue veiled my body. Perhaps, my lupus, an autoimmune disease that causes the immune system to attack and ravage the body’s vital organs, muscles, and blood vessels, was getting the best of me. A flare is what we call it. I was born with it after all.

Mortality is nothing new to me. For lupus is known as the great imitator. The cause of many strange, unexplainable and sudden ailments. Surely, this was nothing to fear. I had survived and recovered from a small stroke, a TIA, only a year before. I’ve endured harsh side effects from repeated chemotherapy doses to suppress my hyper-immune system caused by lupus. I have learned to live with toxic side effects from biologics to boot. I have paid my dues. Never a penny short. Yet, I could not explain why my arms were growing heavy and weak by the second.

And then it hit me.

In an instant, I could not breathe. An elephant suddenly was sitting right on top of my chest forcing me to drop down on my hands and knees. I crawled to the kitchen swiping a cup of water off the table hoping the choking sensation would cease only to let it drop and shatter.

I went on crawling to the bathroom, palms sweaty, fumbling drawer after drawer for an inhaler calmly assuring myself this is simply an asthma attack. I shook and puffed the inhaler twice stealing a quick breath. My one and only breath. For the next thirty minutes, I would be wrestling with a lethal intruder caught between the arms of life and death.

A cold sweat broke out from my body. My clothing pressed heavily against my skin to the point of constricting. I removed everything as quick as my weak hands would let me, one by one, wrapping myself in a robe hoping for breath to return into my lungs. Yet, to no avail. All the while, a pain like no other seared through my jaw, shoulders, back, and chest. Pain is no stranger to me living with lupus. It is my constant shadow. Yet, this pain was one I had never known.

Heart attack did not register my mind. My lab work, a month prior, showed no cholesterol issues or ever did for that matter. My blood pressure has a history for being notoriously low. Rather, I was so sure of myself that my body was having some sort of reaction. A withdrawal from forgetting one of my daily lupus medications.

I crawled desperately to my bedroom searching for my pills. Twisting the cap open took all my strength. I crushed the pills between my teeth until it was fine powder and swallowed it dry.

Surely, I kept telling myself, I must have forgotten. Surely, I will be better and whole again. Surely, I am not dying.

All the while, I sat down. I lay down. I crouched down. I stood up. I sprawled my body across my bed. Only to get back on my hands and knees to do it all over again ten times over. The medicine did nothing. My chest heaved and my lungs burned in a rage. My robe was soaking. I still could not breathe. I knew at that very moment it was never the steroids.

So, I began to reason foolishly again with myself that it had to be another medication. I reached for another prescription bottle believing it had to be pain medication I must have forgotten. I chewed on the pills till it turned to bitter dust.

Still nothing.

My mouth grew salty. I dragged my body to the toilet needing to vomit praying it would all come to an end. I vomited once, twice, begging it be just a vicious bout of indigestion. I’d rejoice if it were food poisoning. All the while, I kept telling myself this will pass. It has to pass.

My heart, on the other hand, would not allow me to tell a lie. A lacerating pain cut deep within the walls and chambers of my heart. More elephants stood on my chest performing a circus act of misery. It brought on a wicked spell of dizziness.

I was having a heart attack.

Before the room turned black, a miracle arrived. My youngest child, ever so calm and brave, found me face down against the cool tile floor. I panicked as I could not speak let alone catch my breath to whisper what was happening to me. Yet, there were no need for words as my son already knew from one glance to seek help.

This would be my first SCAD attack but it was just the beginning of a hellish nightmare.

The local hospital I was rushed to would be of no help or service. My breathing gradually returned. I was grateful, but the wait was more than anyone could ever bear. Hour after hour, I told the nurses over and over again I had a heart attack, but the answer always remained the same. Be patient. Wait your turn.

Not one doctor was interested to listen or spare a minute of their time to help me. Not even the “highly respected” cardiologist, whom I was referred to by a personal friend and physician, would help me shortly after. This cardiologist so “highly esteemed” by his peers assured me he could. Yet his reputation would amount to crumbs the minute he began question me repeatedly: Are you under some stress? Are you sleeping well? How are your children? Are they happy? Are you happy? Do you know what panic attacks are? Do you really have lupus? You don’t look that sick. I believe you are having some type of anxiety issue. I don’t think anything is wrong with your heart. I bet money on it.

Ten days later, however, all would be proven wrong about my heart.

Meanwhile, I returned to my life. I resumed my daily duties and routines. I desperately wanted to put the ordeal, my heart, behind me. I did my best to forget about it all especially after being humiliated by a physician whom I entrusted with my life and heart.

Had I only known or was told what SCAD was, I would have fiercely protected my heart.

I would have thought twice about lifting heavy furniture or unpacking boxes. I would have asked for help rather than lug the hefty table from the family room to my office by myself. I would have realised a pop in my chest, much like a rubber band snapping, was lethal a warning.

But I would learn the hard way.

SCAD was lurking about waiting for me with a vengeance. My dog would be the only one to sense it. He barked and pawed at my chest minutes before SCAD greeted me full force in the morning. The pain was by far more punishing than the first attack. SCAD sank its teeth deep into my neck spreading its venom. Debilitating pain shot down to my legs weakening them to the point I could no longer stand.

Luckily, I would not have to wrestle alone as I did before. I’d be whisked away immediately by ambulance, but it would burden me greatly. My eldest child along his brother were now caring over me. A burden no child should ever bear.

I held on to hope’s hand throughout that ambulance ride. My heart went racing from 190bpm one second to 205 the next. My breathing grew shallow. To surrender was easier than to fight. But all I could think about were my sweet children. Their smiles went slipping away like sand between my fingers. Tomorrow’s memories stolen away all in a second if I succumbed to suffocating in my own lungs.

I love my children to bits. They are precious as buttons to me even though they are on their way to be young men. Yet, they are all I have in life. Had it not been for my sons, I would never know my own strength until fighting to stay alive for them was the only choice I had. I’d manage a scream against each choking breath allowing bits of air back into my lungs.

Panic grew thick in the ambulance. The emergency technicians mumbled to one another they could not read my EKG (ECG). SCAD is not a typical heart attack caused by a build-up of plaque or fat in the arteries. Aspirin, traditional myocardial infraction protocols, along with gold-standard procedures do not work with SCAD as it is a tear in the heart disrupting blood flow.

In the wrong hands, a SCAD patient is in a very dangerous position, be it a medic or a physician who knows nothing about SCAD.

Looking back, it was very clear the emergency response team clearly had no education or training about SCAD. But one thing was for certain, they were fighting against time.

They consulted one another what to do. They even argued back and forth forgetting I was between them strapped helplessly to a gurney. They bickered without end like a loveless, married couple. Whether to give me nitroglycerin spray or not. Whether to turn on the sirens and go faster or continue speed of traffic. Whether or not to give me an injection of pain medication or wait for the doctors at the hospital to do it instead.

They never turned on the sirens. Had I any strength left in me, I would have begged them to drive faster. Bribed them with every pretty penny I owned if could. But pain kept me from doing so. This time around SCAD put the harsh pangs of childbirth and labour to utter shame.

Weak screams slipped between my lips as my temperature went dropping at a rapid rate turning my body colder than ice.

I am not a religious person, but I began to pray. I prayed to God. I prayed to my dead father who was murdered when I was 15 years old. I begged if I were dying for him to show his face as a sign and to take me home. Yet, nothing. I prayed to my dead grandfather who raised me as his own but died from liver cancer a year ago. I begged too for him to show his face as a sign and to take me home. Yet, he never showed nor my father. Not here in the ambulance or ever in the hospital.

In short, the left main coronary arteries of my heart along with my aorta (Type B descending on the heart) dissected. During my first heart attack, the left descending artery tore first.

Of course, I would never know this until much later. For I never saw a doctor. No matter how many times I’d plead with my hands to the nurse, I was laughed at. The very joke of their day.

And in less than an hour, I was handed papers. I was being discharged from the hospital, despite have had no examination. No consultation. I was told there were other patients waiting who needed my bed as they had far more “serious conditions” than me. All the while, this hospital’s CT scan had captured my dissections but failed to inform me. Luckily, this hospital gave me the images, which would be a big key to solving a puzzle – and evidence for malpractice.

All the while, I’d be set to roam free with a broken heart bleeding internally.

After three hospitalisations, seven so-called “top doctors” in Beverly Hills, two unsuccessful procedures, tests upon endless tests, I truly had enough. My own GP also had enough and was at his wits end. He was beyond furious from the ill care I was receiving but, like me, found himself up against a great wall of ignorance.

These cardiologists, who were considered to be the “crème de la crème” to A-list actors, directors, and Grammy-Award music artists, gave me myriad misdiagnoses: Syndrome X, microvascular disease, pericarditis, ischemia, prinzmetal angina, unstable angina, possible thyroid disease, GERD, Nutcracker Esophagus, pulmonary embolism, and costochondritis, to name a few. None of which could be proven positive despite extremely costly, unnecessary testing.

Every day held uncertainty. Every day held a different answer. One day I was told I indeed had multiple heart attacks. Another day I didn’t. Some physicians confirmed they clearly saw the dissections in the imaging and even during my failed cardiac procedures, but simply wrote it off as an artifact, because I was deemed too young to have a dissection.

The worst offender of all was a doctor who questioned me viciously. A question I will never, ever forget or will forgive: Do you use cocaine or Viagra?

I answered the obvious. NO. A very stern NO.

From that very moment, I made a decision to take matters into my own hands. I would be in charge of my own health. I would be my own advocate. I’d forgo sleep researching from dusk to dawn whilst struggling to be a fulltime mum to my children. My health was declining rapidly.

I could no longer bathe myself on my own, feed myself, let alone work as a functioning human being. I desperately needed of an answer. An answer to keep me alive. And an answer to let me live.

Finally, I came across SCAD. I quickly reached out to every self-proclaimed expert and specialists for answers all throughout the United States. I’d receive brief sympathies from specialists, but I just wanted answers. Instead, I got a phone book of names and numbers to call to be passed on as someone else’s problem. I never knew, however, how very little the medical community knew about SCAD. I entered a whole new labyrinth full of dead ends.

Finding a doctor or anyone at all to listen to me was more painful than having a heart attack or SCAD. I grew miserable and terribly homesick. I longed for home. A place I spent from birth to my childhood. The country my father and his father were born and bred. And luckily for me, home (the UK) is where I’d receive an answer to my prayers.

Through all the blood, sweat, and tears, I found a doctor. One of the world’s leading experts in SCAD research. Dr David Adlam. I took a gamble and contacted him but was readily prepared for nothing. Much to my surprise, however, Dr Adlam responded in an instant. He was beyond generous with his time to graciously answer each of my questions without hesitation and did something no other physician did before.

He listened.

Dr Adlam educated me about SCAD and provided critical advice that would ultimately save my life. Had he not warned be about the risks I faced along with surgery, I can guarantee I would not be alive.

Armed with new life-saving knowledge, I eventually was able to find a new cardiologist in Los Angeles. A man who humbly dubbed himself just a plumber. My new doctor listened attentively just as Dr Adlam had listened. Much to my delight and relief, my new cardiologist was in full respect and agreement everything Dr Adlam had advised about my heart. He was able to quickly diagnose me at once. My new doctor showed me exactly where my arteries and aorta tore which many other cardiologists either missed, ignored, or dismissed.

My new doctor would also make a harsh discovery and bring me news I’d never expect even in my dreams to hear. I would also learn about the harsh reality, the destruction and cruel aftermath, SCAD can leave behind in one’s heart. I now have heart failure, complications to my lupus, and adrenal insufficiency or Addison’s for short.

All this, of course, would not be possible had it not been for Dr Adlam. He did not have to help me. A complete stranger. He could have easily ignored my cries for help like every other physician who was quick to dismiss or ignore me. Yet, Dr Adlam did not. And no matter how many times I’ve tried to repay Dr Adlam for his generosity, he has always refused. Dr Adlam will forever be to my family and myself a hero as well as a legend. Not only did he save my life but also introduced to me to an organisation that would forever change my life.

Beat SCAD

Beat SCAD is an organisation made by the people for the people. It is truly a gift, a blessing, no amount of money can ever buy. For Beat SCAD gave me something to believe in. That Sunday was coming just round the corner. Hope.

Beat SCAD is a haven. A sanctuary where all broken hearts meet. A place where survivors and loved ones share their stories ever so bravely. A home to all who are in need of help and support. And most importantly, a family worth fighting for and giving your all.

At Beat SCAD, I have gained two amazing heart sisters. Sisters who have welcomed me with open arms. Sisters who are always ready to catch me if I fall. They are by far the most incredible, phenomenal, and stunning women I have ever met on this earth. Debbie Oliver and Rebecca Breslin have been instrumental in my healing process supporting me every step of the way. Always encouraging me to never give up.

From day one, Debbie wanted to know all about me, my life, my journey, and my story.

I was no longer another “victim” or medical statistic that fell prey to SCAD. To Debbie, I am a person. A human life worth listening to and caring for. And like Debbie, Rebecca has been my rock. SCAD is more than just a physical recovery. It can be very much an emotional physiological rollercoaster ride caused by severe trauma to the heart. No matter what I am going through with SCAD, Rebecca is never too busy to be an ear or a shoulder to lean on.

Rebecca is also one of the reasons Beat SCAD exists today – her fighting spirit demands answers and change.

Through Beat SCAD, I have also gained an amazing heart brother, Matthew Johnson, who lost his mother tragically from SCAD. He has pledged to run 56 races before he is 56. The age his beautiful mother, Carole Johnson, was stolen by SCAD. Matthew is a warrior and voice for Beat SCAD. Had it not been for his story, I wouldn’t have the strength let alone or courage to share mine.

Surviving SCAD is never easy no matter who you are in this world. It does not care for your age, gender, or colour. It does not care if you are rich or poor. You can be the most active, healthiest person on this earth or suffer from an illness like me, but SCAD never discriminates.

I wish I could give you answers as to why SCAD attacks so many of us, but I do not have them.

I wish I could give you a Sunday-school answer at best to soothe and mend our broken hearts from the tragedy SCAD brings, but I won’t. I also wish I could give you a proper ending to my story, but I realised I do not have one. Not yet. Because I am just beginning.

Yet, what I will say is whoever you are, wherever you are in this world, you are never alone.

For the more we bring an awareness together as one heart, one family, we save a life.

And for every life we save, we save the world. We are in this fight together, and one day, sooner than later, we will have answers. We will beat SCAD.