The story of my heart

A SCAD heart attack turned my life upside down. Six months later, I am happier and healthier than ever. How an unexpected health crisis saved my life.

The story of my heart
(Source: WBRC)

BIRMINGHAM, AL (WBRC) - On April 2, 2018, I had a heart attack. It no longer feels strange to write the words down or say them out loud. The shock has worn off and I have settled into my new reality as a survivor, reminded every time I look down and see the medical bracelet on my wrist that something terrifying happened to me, and could happen again, but that does not define me. Pushing through the fear, recovering and overcoming, getting and being better, and creating new priorities- these are the experiences that I cling to and meditate on when fear taps me on the shoulder at 2:00 a.m. I’ve made many positive changes in my life during this experience and learned nothing inspires a dramatic life reset like an unexpected health crisis. For that, I am grateful.

The type of heart attack I had is called SCAD: spontaneous coronary artery dissection and it’s as bad as it sounds. In a SCAD, a separation or tear forms inside the wall of a coronary artery, and blood that leaks from the injury narrows the artery, causing a heart attack. The rupture isn’t caused by trauma, it happens spontaneously, often with no warning, which makes SCAD all the more elusive to doctors and terrifying for survivors. SCAD isn’t caused by plaque in the arteries or high blood pressure, researchers aren’t exactly sure why SCAD occurs. What is known is that SCAD can be connected to some underlying vascular and connective tissue conditions, as well as pregnancy and hormones and there is a strong relationship between SCAD and stress. Most survivors are young, healthy women with no obvious risk factors for heart disease. Women just like me.

BEFORE THE SCAD

(Source: Beth Shelburne)

April 2 was a long day for me. It was a Monday after a week-long vacation and I had a deadline to meet for a complicated investigative story. I was at work for eleven hours, not unusual for anyone employed in a TV newsroom. After a full day of multi-tasking to get the story done, there was a technical problem during the 6 p.m. broadcast and the entire piece never aired. Suddenly, my entire day felt wasted. I stomped out of the studio, grabbed my things in the newsroom and left work in an angry huff. This was my mindset minutes before I had my heart attack.

Let me back up and put this in perspective. I worked this way for 20 years. Long hours of breaking news, live television, running and gunning to meet deadlines upon deadlines upon deadlines, it was all normal to me. The physical performance of anchoring and reporting the news and the mental energy required to produce stories under pressure, not to mention the gyrations required to achieve proper TV hair, makeup and wardrobe- it all makes for a ridiculously intense level of stress. For a long time, I was driven almost exclusively by ambition, but as I’ve gotten older, that’s been harder to sustain. In recent years, I yearned to explore other, less demanding ways to make a living as a writer and journalist, but never stopped working long enough to examine my options.

That brings me to the week before my heart attack. It was spring break for my daughter, and the end of graduate school for me. My family planned to spend half the week in a beautiful condo on the beach. The day before we drove down to Florida, I defended my master’s thesis before a committee of faculty members at University of Alabama at Birmingham (UAB). This represented the culmination of my work in the university’s graduate creative writing program, a pursuit that took me four years of attending classes while working full time.

I enjoyed graduate school immensely, but the added pressure of meeting school demands on top of work demands, along with family obligations had all taken a toll. My thesis was a labor of love, but by the time I turned it in, I was exhausted. I was wound up and nervous at my defense, and when it was over, I felt a gnawing unease in my gut. My committee praised the work and signed off on my graduation, but my stomach remained in knots. When I got home, I told my family the good news as my mom studied my face from across the room. “Beth, you don’t look relieved,” she said. I shrugged it off, but knew I was emotionally spent. “Mama, why aren’t you happy?” my sweet daughter asked. I couldn’t give her an answer.

The next day, we headed to the beach. Despite plenty of warm sunshine, delicious seafood and great company, I couldn’t sit still. I tried to enjoy myself, but instead felt restless and irritable. At night, I tossed and turned, replaying the 90 minutes spent in front of the faculty committee. The constructive criticisms they offered for my writing morphed into out sized insults in my mind, as their encouraging feedback went silent. This is how it works for perfectionists. One negative out of 99 positives will keep you up at night, even on vacation.

THE SCAD

Back to April 2, and I’m driving away from work in a bad mood after that long and frustrating day. I decided to stop at a grocery store and was standing in the produce aisle when a friend called to ask about my thesis defense. I began talking, a shopping basket in one hand, phone pressed to my ear in the other. Suddenly mid-sentence, I experienced an unusual tightening in my throat and chest. I stopped talking and instantly felt hot and clammy and wondered if I was having a panic attack. “I don’t feel good, call me back later,” I said and hung up.

I made my way to the checkout line, trying to breathe and not freak out. A dull ache began to accompany the strange constricting in my throat and chest, like invisible hands were trying to choke me. It had been decades since I’d experienced a panic attack. I was diagnosed in the summer after my freshman year of college after a series of scary spells in which my heart raced and I couldn’t catch my breath. Doctors had recommended medication, but I had refused. “I can manage my anxiety without medication,” I proudly maintained, and believed I was doing well because I hadn’t had any panic attacks since then, until now. Except, this did not feel anything like a panic attack.

I paid for my groceries and walked to my car as my symptoms intensified. I drove myself home in a hurry and by the time I pulled into my garage, I was nauseous with a burning in my throat and gut. Still, I carried the groceries up a flight of stairs and set them on the kitchen counter. I considered unloading them, but decided to take a bath instead. Before I got into the tub, I opened the medicine cabinet and downed two aspirin and two tums. The symptoms had been escalating for 15 minutes, the dull ache was now constant, spreading through my chest.

By the time I climbed into the bath, I was sweating. The pain squeezed and radiated into my arms, jaw and eventually my teeth, like an electric current traveling through my body. It was an unpleasant experience, but never excruciating. I suppose I imagined a heart attack would arrive like a lightning bolt, throwing a person to the ground as they clutched their chest. Maybe that’s why I didn’t consider what was happening to me as potentially lethal. I wasn’t thinking too much about the cause, I just wanted it to stop.

And then it did. The symptoms began to recede as quickly as they came on, and in a minute or two, all the sensations lifted and I felt fine, like nothing happened.

Typical heart attack symptoms (The Mayo Clinic)

  • Chest discomfort or pain. This discomfort or pain can feel like a tight ache, pressure, fullness or squeezing in your chest lasting more than a few minutes. This discomfort may come and go.
  • Upper body pain. Pain or discomfort may spread beyond your chest to your shoulders, arms, back, neck, teeth or jaw. You may have upper body pain with no chest discomfort.
  • Stomach pain. Pain may extend downward into your abdominal area and may feel like heartburn.
  • Shortness of breath. You may pant for breath or try to take in deep breaths. This often occurs before you develop chest discomfort, or you may not experience any chest discomfort.
  • Anxiety. You may feel a sense of doom or feel as if you're having a panic attack for no apparent reason.
  • Lightheadedness. In addition to chest pressure, you may feel dizzy or feel like you might pass out.
  • Sweating. You may suddenly break into a sweat with cold, clammy skin.
  • Nausea and vomiting. You may feel sick to your stomach or vomit.
  • Heart palpitations. You may feel as if your heart is skipping beats, or you may just be very aware that your heart is beating.

My husband, Kevin, peeked into the bathroom. “You OK?” he asked. “I think I just had a really weird anxiety attack,” I said. We knew I’d been under a lot of stress, and anxiety was something I struggled with from time to time. This theory made sense and so we allowed our evening to play out in an ordinary way. We ate dinner, I watched television with my daughter and we all went to sleep. I didn’t think too much about the odd symptoms I had experienced that night. I didn’t want to think about it. It was easy to not think about it.

But I woke up at 5:00 a.m. thinking about it. “Could I have had a heart attack?” I asked Kevin. Neither one of us thought so. I was a healthy 43-year-old who exercised and ate vegetables. Questions raced through my mind. Can a heart attack just go away on its own? If it wasn’t a heart attack, what was it? Should I just forget about it and go to work?

Kevin suggested that I see my doctor, but I was still fixated on the possibility that my symptoms came from anxiety. I googled “heart attack vs. panic attack,” and when I saw a list of the difference in symptoms published by Harvard, a new urgency hit me. My pain had not been stabbing, like in a panic attack, it was dull. It also radiated, moving and changing like a living thing. As I read the list, I felt my first thread of ice cold fear.

“I think you need to take me to the emergency room,” I told Kevin.

DIAGNOSIS AND TREATMENT

I was in the hospital for three nights and much of that experience is now a jangle of dull memory fragments consisting of beeping monitors, uncomfortable exams and tests, and confusing explanations of SCAD that left me terrified. In the emergency room, I learned my troponins were elevated, a blood protein that indicates heart damage. Soon after, I was wheeled into a catheterization lab to undergo a coronary angiogram, an invasive diagnostic procedure that gives doctors an inside look at blood flow in the heart.

A busy team worked to thread a catheter through an artery in my groin and then injected contrast dye into the blood vessels of my heart. I was conscious but drowsy, doped up on sedatives and painkillers that stilled the crescendo of panic building inside me. The young cardiologist leading the team in the lab confirmed I had suffered a SCAD. “Did you know you also have a coronary fistula?” he asked me, still wearing his scrubs and surgical mask, me flat on the X-ray table under a drape. A what? He explained a fistula was an abnormal connection between an artery and a chamber of the heart, but it probably wasn’t connected to my SCAD. He wasn’t sure if my fistula presented another problem or not.

It was too much to wrap my mind around. I thought to two hours earlier and how I’d almost blown the whole thing off and gone into work. What I didn’t know yet was this diagnosis was simultaneously the unluckiest and luckiest moment of my life.

I would be medically managed, the doctors told me, meaning I’d take a cocktail of heart medications, but would not need bypass surgery or stents placed in my arteries. They told me most SCADs heal on their own, but I should have tests done for possible underlying conditions. My chest hurt so they gave me morphine. My husband and daughter were there with flowers, then my parents, then I was finally alone when I curled into a ball on the hospital bed and cried. Machines whirred and chimed in the dark- blood pressure, heart rate monitor, an IV bag hovered on a stand nearby like a ghost.

I am alive, I am alive, I am alive. I whispered to myself over and over, chilled to my bones, my teeth chattering. I prayed and thanked God for allowing me to live and then I thanked myself for being strong. “You are my favorite person,” I said out loud in the dark, willing my body to hear my gratitude, imagining all my cells perking up and feeling the love I was sending to them. The flat hospital pillow was wet with tears, my face a slimy mess. I wrapped my arms around myself and continued to let the tears fall in an awkward hug, taking care to avoid the IV in my left arm and the pressurized bandage on my upper right thigh. “I love you,” I whispered, the only time I ever remembered saying those words out loud to myself. “Please don’t die.”

The next morning, I found myself surrounded by a horseshoe of doctors in white coats, lining the perimeter of my room on morning rounds, their faces grim. I would undergo a battery of tests during the next 48 hours- a CT Scan, MRI, chest X-ray, echocardiogram. Pieces of scary-sounding observations from doctors stuck in my mind: my coronary arteries were tortuous and twisted, my right coronary artery was mysteriously large. What I remember most is shivering with fear, gob smacked with my own vulnerability. I had my first post-SCAD panic attack that day, immediately recognizing the bomb of adrenaline as it exploded in my upper body. I paged my nurse and asked for a sedative. I had several other panic attacks while I was there.

When I was discharged from the hospital, no one said a word about my mental health. I was given literature about a heart healthy diet and the cardiac rehab program, but nothing about SCAD. I had so many unanswered questions: did I have an underlying condition that caused the SCAD? What should we do about the fistula discovered in my angiogram? Why was my right coronary artery enlarged? A follow-up appointment with a cardiologist I hadn’t met was scheduled for several weeks later. I was sent on my way with a week’s supply of sedatives, like seven pills would somehow magically stop the crushing anxiety and sadness that was about to crash down on me.

RECOVERY AND SECOND OPINION

Any type of heart diagnosis carries substantial psychosocial effects, but SCAD survivors are particularly vulnerable to anxiety and depression. Patients with SCAD report higher psychological distress and worry compared to other heart attack patients, and it’s no wonder. Most SCAD survivors are young women who never expected to have a heart attack, and given the lack of knowledge about SCAD, the diagnosis comes with a mountain of uncertainty. Most of the recommendations are based on the best educated guess doctors can give.

SCAD can also strike more than once, with a ten year recurrence rate of 20%. The fear of it happening again haunts survivors, but unfortunately, SCAD-specific support groups can be hard to find and many patients are not screened for mental health needs. Managing the emotional part of SCAD is key to recovery and this needs to be recognized and prioritized in the cardiology world. After all, depression and anxiety double the risk of heart disease and women under 60, the key demographic of SCAD, carry the highest risk.

I thought I knew fear and sadness, but after my SCAD it was like I met both for the first time. I cried frequently, worried about death constantly and lost my appetite. I remember long stretches of days when I was too tired to get off the couch. A palpable sadness hung over me, an overwhelming and indescribable weight that left me feeling disconnected, like an abstract painting hanging on the wall. I was grateful for the outpouring of love and support around me, but mostly, I felt scared and sad and alone. I hated being the source of worry for my family, yet I moped through my days like an army of one. I was experiencing grief, mourning the life I used to have.

Adding to my misery, I continued to experience chest pain and discomfort long after my SCAD. This gift that keeps on giving occurs in half of all SCAD survivors, a much higher rate than other heart attacks. I was hypervigilant, obsessively monitoring my blood pressure and constantly ascertaining the lingering and strange sensations happening in my body. A creeping, crawling feeling in my chest came and went, like a floating piece of ice. Ribbons of discomfort and pressure would suddenly begin snaking around my chest and throat. At times, I would suddenly become aware of my heart thudding inside me, like a cold drumbeat. Is this another heart attack? Is it a panic attack? Should I take a sedative? I tried to scan my symptoms rationally, but it was exhausting just to exist. On one particularly rough night, my husband called an ambulance that took me to the hospital, but I turned out to be OK. I could have danced out of the emergency room I was so relieved.

I didn’t feel like I had enough information, so I started doing research online. Several active SCAD communities became a blessing and a curse. It was gratifying to find other SCAD survivors and read their stories, but I was horrified to learn about the terrible ordeals of other women. Some were turned away by hospitals and told that they couldn’t be having a heart attack because they were young and healthy. Others were treated by doctors who attempted to place a stent in their artery, but ended up making the dissection worse. The discussions about SCAD recurrence petrified me. I would often visit the pages looking for information about medications, but log off in despair, convinced that something much worse was coming for me, that I would never get better and should make peace with being a sliver of my former self.

I knew I wanted to go to Mayo Clinic for a second opinion. Many of the SCAD survivors I met online had been there, and Mayo was undertaking the largest SCAD research project in the country. A friend emailed me to let me know he went to high school with Mayo’s leading SCAD expert, Dr. Sharonne Hayes. He put me in touch with Dr. Hayes, and I made plans to fly to Rochester, Minnesota in June. My insurance would need an authorization for a second opinion from my cardiologist to cover the Mayo visit, but I felt sure it wouldn’t be a problem given my unusual diagnosis.

I assumed too much. The first cardiologist I saw three weeks after my SCAD refused to sign off on a second opinion at Mayo and seemed personally insulted that I asked. He appeared distracted and hurried and became exasperated with my questions, eventually barking at me that I needed to move on and stop trying to get answers that were impossible to find. I ended the appointment abruptly and left his office in tears, shaking like a leaf. His nurse later called me to apologize. Unfortunately, this experience is not unique. I have learned many SCAD survivors encounter a rigid obtuseness from doctors who may be unfamiliar with SCAD or uninterested in treating young, traumatized women with lots of questions. This needs to change.

I found a cardiologist who was a much better fit. He listened to me patiently, agreed that a second opinion at Mayo would be valuable and even called me at home to check on me after our initial appointment. I instantly felt better as I left his office for the first time. He was kind and positive and made me feel safe, like I was in good hands. We had a long discussion about all the life changing measures I was facing- new medications, time off from work, whether my heart would heal completely. I felt like I finally had a say in my care.

Despite the difficulties of my recovery, I was making some positive life changes. I had completely eliminated caffeine from my diet. I began meditating, using an app called Headspace to guide me. For the first time in my adult life, I spent long periods of time being still. To my surprise, I enjoyed sitting in my backyard doing nothing, listening to the birds with the warm sun on my face. I began seeing a psychologist for talk therapy and a psychiatrist prescribed the antidepressant Zoloft for my anxiety and depression.

I also started cardiac rehab. Three mornings a week I reported for duty in a crowded space at UAB’s Spain Rehab, surrounded by other heart and pulmonary patients, some of them dragging oxygen tanks with them to the treadmills and stationary bikes. I wore a heart monitor around my neck while staff monitored my vital signs and I slowly began to build up strength and confidence. Each week the staff encouraged me to add more to my workout and eventually I was sweating while I biked, speed walked uphill and lifted weights. I met many survivors who’d been through much worse than me- multiple bypass operations, cardiac arrest, heart failure and transplants. They gave me a new perspective on the grace I’d been granted. As one SCAD survivor said about heart disease, “Some of us get a splinter, and others walk the plank.”

MAYO CLINIC

(Source: Beth Shelburne)

I traveled to Mayo Clinic in June, where I learned my SCAD had completely healed and my heart function was back to normal. This was terrific news that I was thrilled to receive from Dr. Hayes, who is considered a hero in the SCAD community. Dr. Hayes comes across as both warm and assertive and I liked her the instant she walked into my exam room. If she didn’t work in medicine, I could easily see her in public office. She wrote about being called to women’s heart health and more specifically SCAD research in an essay titled, “If I don’t do it, no one will.”

She and the Mayo team also diagnosed me with Fibromuscular Dysplasia or FMD, which is SCAD’s most common underlying vascular condition. FMD causes abnormal cell development in arteries and not only raises the risk for SCAD, but also other arterial dissections, aneurysm and stroke. There is no treatment for my FMD, but I’m glad to know that I have it and empowered to learn more about it. Dr. Hayes spent over an hour answering all my questions about SCAD, FMD and managing stress. I told her about my high stress level at work and that I was beginning to think I needed to make some major professional changes.

“I think this is a time where a lot of patients rethink stress,” Dr. Hayes said. Her advice was to consider everything that my work entailed. What did I like about it the most? What caused the most stress and anxiety?

“Identify the things that are so core to the work that they won’t go away and then ask yourself, are those toxic to me?” she suggested.

This wise advice helped me decide to end my on-air work as a TV news anchor and reporter. I love journalism and telling stories, but I couldn’t get around the reality that I had always struggled with the public part of my job. The pressure to deliver the news while looking and sounding perfect had come at a cost. I was tired of the struggle and ready to start a new chapter.

Can you see the smile on my face? I am at total peace with my decisions about my professional future, which I can now...

Posted by Beth Shelburne WBRC on Friday, September 14, 2018

Dr. Hayes referred me to another cardiologist at Mayo for an opinion about my fistula and enlarged right coronary artery. Dr. Chet Rihal, an expert in structural heart defects, recommended closing the fistula in a procedure that would be done in the catheterization lab. He explained that my fistula caused abnormal blood flow on the right side of my heart, which my right coronary artery had struggled to accommodate. Over the 43 years of my life, it had dilated to twice its normal size. If left untreated, this could eventually lead to early heart failure.

“How many SCAD patients have you treated with fistulas?” I asked.

“Actually, none,” Dr. Rihal replied with a laugh. Both conditions are fairly uncommon and he admitted he’d never seen a SCAD patient with a fistula. That’s when it was decided. I am officially the unicorn of heart patients. My cardiologists have not argued with that.

I traveled back to Mayo in July to undergo the fistula closure, and it was a difficult procedure. It took four hours, because doctors had a hard time reaching the fistula due to my twisty, curly-Q arteries. Just like in the angiogram, I was conscious, but pumped full of sedatives and painkillers, so the experience is foggy in my memory. By the time they successfully closed the fistula using a coil, I was weepy and out of sorts. Dr. Rihal explained that the coil had occluded a distal branch of my arteries, so I would need to be watched closely. I began having terrible heartburn that night and the next day tests confirmed, the occlusion caused a small heart attack. This is always a risk in cardiac procedures, but it still wasn’t easy news to take.

Luckily, this event wasn’t nearly as traumatic as my SCAD. I was uncomfortable for several days in the hospital, but they took great care of me at Mayo Clinic. The cardiologist doing rounds had not been involved in my fistula closure, but she got the job of giving me the test results indicating a heart attack. As soon as she said the words, I began to cry. She immediately sat on the bed and held my hand as she talked to me. She explained that they were hopeful the damage from the occlusion would be minimal and this is still my hope and belief today. Her kindness to me during that dark moment made a difference. I believe empathy and encouragement from doctors matter a great deal in medicine.

LIFE AFTER SCAD

I am now part of the SCAD community, “Scadsters” as we call ourselves, and I am in good company. There’s been an explosion of knowledge about SCAD in the last decade, largely driven by patients. Survivors, unhappy with the lack of knowledge and resources, changed the SCAD dynamic by insisting they be heard. They advocated, started fundraising walks called “Scadaddles,” volunteered, set up registries and ultimately, their combined energy galvanized long-needed research, including the largest SCAD study in the United States underway at Mayo Clinic that I have gladly joined. The research was initiated by Katherine Leon, a SCAD survivor who is now a full time advocate and founder of SCAD Alliance. I consider every SCAD survivor my sister in a big and growing family none of us wanted to join.

I still don’t understand everything that happened to me or why. I don’t know all there is to know about SCAD, but I want to help people understand that not everyone who has a heart attack looks a certain way. I want to encourage other women to find a doctor who listens and cares. Advocate for yourself. My second opinion at Mayo Clinic was out of my insurance network and the first answer I got was no. Don’t take no for an answer. SCAD experts no longer consider SCAD to be rare. There is a growing belief it’s often misdiagnosed or not recognized at all.

I had 43 years of a free ride. All that time with no real health worries, I beat my body up with too much work, not enough sleep, self-medicating with alcohol and never prioritizing my emotional well-being. I always recovered quickly from the occasional illness, pushing through the world with a bold step, strong ambitions and healthy appetites, living with an audacity only possible when you’re naive of your own fragility. And then suddenly, you’re not.

I have learned that grace can arrive in many forms. For me, my SCAD saved my life. It not only facilitated the discovery and repair of a potentially fatal heart defect, but also opened up something inside of me that is bigger than anything I’ve known. For the first time in my life, I was forced to be still, and in that stillness, I learned the value of radical self-care. My life took on a new urgency to live each day by following my heart and above all, loving myself and all my imperfections, wonky arteries and all.

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