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What I want you to know about having had and living with SCAD

June 17, 2016

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Sussi Voak.

Photograph by: Jamez Picard 

It was March 1, 2014. I was walking into the office at work when I started to feel all these symptoms: left sided chest and upper back pain, left triceps pain and a very weird sensation in my throat. I was definitely worried but my mind couldn’t go to the obvious. There was no shortness of breath nor nausea, no dizziness nor jaw pain. And while I was having chest pain it wasn’t a heaviness and it definitely didn’t feel like an elephant was sitting on me. I was healthy, without a family history, an avid exerciser with no risk factors. And if I hadn’t been working that day things could have turned out differently.

But I was working that day, in the hospital with doctors all around. As a physical therapist I work closely with the hospital physicians and have gotten to know some well. They were stumped too. I had the option of going down to the ER and thank goodness I did. I was told I was having a heart attack. No way. It must be a mistake. Except for my labs, all other tests were negative.

Two days later during an angiogram they finally saw it. My left lower circumflex artery was 80-90% blocked due to a ripping in my arterial wall that meant blood couldn’t flow to my heart. SCAD. Spontaneous Coronary Artery Dissection. The medical community use to think this was rare but now are realizing it’s under diagnosed. The young healthy female who drops when exercising; Probably SCAD. The “hysterical female” with some chest pain and perhaps gastrointestinal symptoms but no family history; could be SCAD. The research is so new, started after an online group of mostly women organized a group and reached out to the Mayo clinic. It occurs mostly in healthy females and at times may be correlated with hormonal changes but often is not. It can occur at times of increased emotional stress but not necessarily. The artery tears and blood flows in a false lumen, robbing one’s heart of blood.

If the heart attack doesn’t kill you, researchers are finding that the arteries will repair themselves. That is if you didn’t have to endure open heart surgery or the artery wasn’t completely blocked and stents were needed. Though they try not to place stents as almost half the time attempting to do so causes more tearing and damage. I have two premedicated stents in my left circumflex artery, an intervention that has been shown to develop problems later. Medication has been found to help but again the research is still young.

That’s the physical effect of SCAD. The emotional impact is much more complicated. It’s a rollercoaster of fear and confusion, shock and at times despair. It’s compounded by doctors and at time family members who see that physically we’ve healed so we should move on.

But it’s different now. I worked in the hospital where I had my heart attack. I don’t anymore. While I had always felt compassion for my patients, now I know what they feel on an entirely different level. I would see someone lying in their hospital bed, staring off into space and feel the loneliness, sadness, worry. I worked so hard in therapy to get past this, through this, but in the end I decided I didn’t want, no couldn’t be around this anymore.

Then there’s the recurring chest pain, which seems to come with surviving SCAD. When it comes the fear and worry begin again. Sometimes we go back to the ER, sometimes we take a nitro and sometimes we just try to remember to breath. Anytime I feel “off,” nauseous or overtired I wonder if something is happening again.

Yet there is growth. I feel more joy and am overall happier than I’ve been in years. I have spent so much time since my heart attack examining my life, trying to listen to dreams and desires I thought were just that, dreams. I quit the job that was so financially secure but left me crying inside. I have traveled with my son and am leaving for an extended trip to see more of the world with him. I have decided to give myself time to explore my creative side. I have realized I want to be a writer. I know that life is short, that it is sweet and to be savored.

The recurrence rates for SCAD kind of suck and I am determined to spend as much time with my son as I possibly can. Hopefully I will be one of the lucky ones that doesn’t have another event. In some ways, I am already one of the lucky ones. For I have been forced to examine my mortality while I am still young, to see if I am living my life, if I am going down the path meant for me. I have realized that I have a choice to live the life I want and I am choosing to do so.

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Hi, I’m Kristen. I’m a mom of four kids via birth and adoption and a writer living in Southern California. Read More.

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