Archives for category: spontaneous coronary artery dissection (SCAD)

In 2016, I had the honor of speaking at the Congressional Briefing of the Coalition for Women’s Health Equity at the U.S. Capitol. Please listen to my story and do what you can to support sex-specific research of cardiovascular disease in women.

Coalition for Women’s Health Equity
Congressional Briefing
May 12, 2016

Good morning. My name is Katherine Leon. At age 38, I survived a heart attack caused by spontaneous coronary artery dissection. To make the most of my second chance at life, I became a WomenHeart champion. Today, I am co-founder and board chair of SCAD Alliance.

As a woman with heart disease, I’ve thought a lot about what the term “equity” means. Equal? Balanced? Fair? We all know life is not fair.

So what do we do? Some of us pretend. Some of us hope. Others strive. If you have almost died at a young age, you strive, because you know that life does go on without you.

I remember. I was home from the hospital healing from emergency double bypass surgery and an infection in my leg where the second bypass graft had been harvested. I wanted to take care of my baby, but physically could not get to him or use my arms while my sternum healed. A college student we’d hired played with my 2-year old outside. There was nothing I could do. It was like being a ghost. Life went on.

Thankfully, I did have amazing support and survived. The experience made me determined to find the cause of SCAD and prevent it from happening to others.

I want to stop the misdiagnosis and disparities in care that I’d experienced. My heart attack symptoms had been dismissed by my OB/gyn, my internist, my sons’ pediatrician, the lactation consultant … none were curious. They all basically said “Get over it.”

Despite the fact that eighty percent of people struck by SCAD are women, no one took a second look at me. I was repeatedly told by doctors: “You’re young. You’re healthy. It’s not your heart.” It took 2 trips to the ER to get admitted and another 3 days until a test was done to find the 90% blockage of my “widow maker” artery. During those 6 days, while my heart tissue was dying, I was patronized. Dismissed. Viewed as a drama queen. An “anxious female.”

Heart disease remains the #1 killer of women

Disparities and inequities persist across diverse populations of women
Our public health strategies and health care systems continue to carelessly ignore sex and gender differences in research, prevention, diagnosis and treatment

The systems and strategies must change to effectively reduce the burden of heart disease in women

To me, health equity means striving together to achieve the best possible reality for all. On behalf of the 43 million women in this country whom I represent, WomenHeart: The National Coalition for Women with Heart Disease applauds the formation of the Coalition for Women’s Health Equity.

Thank you.

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Granddad Bass OriginalYou are probably familiar with the African proverb “it takes a village to raise a child,” popularized in America as the title of Hillary Clinton’s book in 1994. Over the years, it began to take a village to do most anything — yet a cliché stops being a cliché the moment our experience speaks to its meaning.

Recently life taught me it DOES take a village. Birth, growing up, survival, death – it all takes a village.

A few weeks ago, my 97 year-old grandfather fell for the last time doing things his way (let’s just say he insisted on standing and letting go of his walker). He broke his pelvis, collarbone, and elbow (again). While in the hospital, he developed internal bleeding and sepsis. By the time we arrived, his speech was unintelligible, but he could nod and shake his head to communicate. (The last words we understood were those when he saw my mom, greeting her one final time with his trademark, “Hey babe.”) All things considered, our last few days together were good ones. When he was awake, his eyes were bright. He laughed at a joke. But severe seizures had set in and it was time to make the decision.

I was astounded by the care and concern of each person we met – nurses, technicians, respiratory therapist, transport staff, hospital social worker, and internist. In their own ways, they gently urged the right thing for him, which was inpatient hospice and palliative care. In hospital, they were doing their jobs and treating symptoms – even doing a CT scan to try to determine the cause of his seizures. In hospice, he would receive pain medication to control the seizures and peacefully pass.

The hospice staff each were angels personified. I could have never imagined that such a place existed and that people devoted themselves to the delicate transition between life and death. I brought my grandmother to spend two afternoons with him, and she held his hand reliving their life of more than 77 years together. And then he slept.

Granddad’s experience sounds almost like the perfect way to go. Yet how many of us will be so fortunate? He was a cat with nine lives, and toward the end, was helped by my mother, my grandmother (who, even at 95, doted on him), the staff of a wonderful assisted living facility, rehab therapists, a part-time caregiver, and ultimately strangers – the staff at the hospital and hospice. I believe it is a tribute to him and all that he did for others in his lifetime that he lived so long and touched so many.

Today, we are fortunate that the village extends to the virtual world. If my grandfather had been born in 1966 instead of 1916, perhaps when he had his first heart attack at age 46, he would have told his family instead of keeping it a secret until his second one decades later.

In family lore, his “spell” was nerves, and the doctor advised him to find a hobby. In true dairy farmer fashion, he decided to fish. Never mind that he had no place to fish. He dug out not one, but two ponds on his 80-acre farm and stocked them with bass and bluegill. Some of my fondest memories are of fishing with my grandfather. It took until I was 28-years-old to finally catch a bass, and he was so proud of me. It was 6 pounds 10 ounces, rivaling the 8 pounder he hooked when I was small.

If his heart disease happened today, maybe he would go online to explore what to do to prevent future heart attacks. Or maybe, his mystery heart attack was a spontaneous coronary artery dissection, or SCAD, like mine. Today the technology exists to know the answer. In Pimento, Indiana, circa 1962, the doctor handed him unidentified prescription pills in a pocket-sized brown paper bag with instructions written by hand. Everyone did what “Doc” said, even though they weren’t exactly sure why. His advice to go fish, though, you can’t argue with that.

Granddad — your village misses you!

Why, yes … yes she has!

You know at gatherings, when people haven’t seen each other for a few years, generally some speculation ensues. Real or fake?  A lift or good genes? And in the most severe cases, who is that stranger?!

The Bionic Women (and friend)

Well, with great pride, the three of us pictured at our 30th high school reunion can state without a doubt, we definitely had some “work” done. Some serious work. From left to right: heart attack from spontaneous coronary artery dissection, repaired with double bypass surgery; an acoustic neuroma, successfully removed through brain surgery; and open heart surgery to graft an aortic aneurysm and perform a mechanical valve replacement. (No health issues for our lap man — he’s just a very funny accessory!)

It wasn’t by design, but we saved the shop talk until the very last. As people said good-byes and drifted out the door of the heartwarming gathering we’d enjoyed, the three of us found ourselves together. Like a last minute huddle, reliving the not-so-great highlights of our years since high school and gearing up for the time until our next reunion. By way of illness, we share a language and awareness you only gain through experience. We are well, at least for the moment, and that is truly all each of us ask. Because as we learned the hard way at an early age, things can always get worse. But day by day, they can get better too.

Thirty years have passed. It was enlivening to realize that within each of us, our 18-year-old selves still flourish. The bikini days may be gone, but I’m much happier being bionic!

[Correction: A Dose of Reality regrets our misstatement that “the bikini days” are over. Rock it, girl!]

 

I speak for those who can’t speak tonight. I speak for those who’ve been brushed under the rug by slight-of-hand. I speak for the dead.

We’d all like to believe that if we control our risk factors, listen to our bodies, and call for help when in need there would be no heart disease. No heart attack. No stroke. No death.

Yet we all know the truth, which is women do the right thing every day and die anyway.

Whether from congenital defect, unmanageable risk factors, or un-researched biological boogeyman, women die from heart disease every minute of every hour of every day because we haven’t devoted the attention, research dollars, or sweat equity to keep them alive.

Don’t insult my intelligence by telling me that awareness of heart disease will keep me alive. I literally could teach a course on Spontaneous Coronary Artery Dissection (SCAD) to med students today and die of a second heart attack from SCAD tomorrow because the data hasn’t been funded to explain my disease or prevent my death from it.

Talk to me about answers. Show me cradle-to-grave assessment, risk management, and care. Act upon my crisis.

Women die every minute of every day because death from heart disease isn’t yet lucrative or sexy enough for our health care and research establishments to act.

I’m fighting hard until I Go Dead for Women.

Nope, not a typo. Just a tribute to 2012, which truly was a lifetime crammed into 12 months. With a pattern of amazing, great, good, fair, fine, and ending up fantastic – I have no complaints!

As a family, we finished the year stronger and more focused than ever. As a mom, I earned intangible payoffs seeing my little boys become ever-nearer the age of young men. As a person, I experienced the fulfillment of hard work blooming into an adventure of hope. Nothing in life is certain, of course, but now more than ever, those of us with spontaneous coronary artery dissection (SCAD) have a growing body of research to look to from a dedicated research partner, Mayo Clinic.

What we are learning isn’t pleasant. Even though we each were assured that SCAD doesn’t recur, it does. Even though the party line has always been, “it’s rare,” it isn’t. Even though we’re told SCAD is a fluke, it does have associated conditions, such as FMD, which can create additional devastating health problems, such as kidney failure and stroke.

So, for those out there who believe SCAD is actually rupture of atherosclerotic plaque (i.e., it’s “our fault”), you are wrong. And if you’re one of the nonbelievers still of the mindset that interventional cardiologists cause dissections during unnecessary catheterizations, you’re wrong too. Sure, surgical accidents happen but for our population, “spontaneous” is the operative word. We still don’t know the “why” of SCAD or exactly what to do about it, but the Mayo Clinic SCAD research team is making progress.

For me, this New Year’s Eve wasn’t about auld lang syne, it was about turning the page on a life in the year — and it was a doozy. Cheers to you and 2013!

Creating a play list to represent spontaneous coronary artery dissection is a challenging task! Just a few ideas to get started. Which songs would you add?

Torn, Natalie Imbruglia
Illusion never changed into something real
I’m wide awake and I can see the perfect sky is torn
You’re a little late, I’m already torn. Torn.

Little Talks, Of Monsters & Men
You’re gone gone gone away
I watched you disappear
All that’s left is a ghost of you
Now we’re torn torn torn apart, there’s nothing we can do
Just let me go we’ll meet again soon…
…Some days I feel like I’m wrong when I’m right
Your mind is playing tricks on you, my dear
‘Cause though the truth may vary
This ship will carry
Our bodies safe to shore

Time of Your Life, Green Day
Another turning point

A fork stuck in the road
Time grabs you by the wrist
directs you where to go.
So make the best of this test
and don’t ask why.
It’s not a question
But a lesson learned in time.
It’s something unpredictable
but in the end it’s right.
I hope you had the time of your life.

Stronger, Kelly Clarkson
What doesn’t kill you makes you stronger, stronger
Just me, myself, and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone

Dog Days are Over, Florence and the Machine
Happiness hit her like a train on a track

Coming towards her stuck still no turning back
She hid around corners and she hid under beds
She killed it with kisses and from it she fled
With every bubble she sank with her drink
And washed it away down the kitchen sink

It’s My Life, Bon Jovi
This ain’t a song for the broken-hearted
No silent prayer for the faith-departed …
It’s my life
It’s now or never
I ain’t gonna live forever
I just want to live while I’m alive

Stereo Heart, Gym Class Heroes with Adam Levine
My heart’s a stereo
It beats for you, so listen close
Hear my thoughts in every note o-oh
Make me your radio
Turn me up when you feel low
This melody was meant for you
So sing along to my stereo

One, U2 with Mary J. Blige
Well it’s too late, tonight
To drag the past out into the light
We’re one, but we’re not the same
We get to carry each other
Carry each other
One…

Put a Little Love in Your Heart, Annie Lenox and Al Green

You see it’s getting late
Oh please don’t hesitate
Put a little love in your heart
And the world will be a better place 

 

My Body, Young the Giant

My body tells me no 
But I won’t quit 
Cause I want more

 

Arley, meet Henson.

A funny thing about human nature. From birth, we are driven by the uniqueness of our selves; the sense that we are “the only one” (some more afflicted so than others, unfortunately). But in the most healthy way, feeling special or one-of-a-kind buoys us through the sandlot, the purgatory of prepubescence known as middle school, and on through college where we truly test the boundaries of self.

So what happens if you add a rare disease or unique medical experience into the picture? This uniqueness of self becomes magnified, in many ways, to a terrifying degree. They are the definition of “alone,” these rare disease diagnoses.

I experienced that degree of aloneness when diagnosed with spontaneous coronary artery dissection (SCAD). But I was convinced I was not the only one. Despite doctors’ assurances, I just knew I was one of many. Whether this was my upbringing by solid mid-westerners or poor self-esteem at the time, regardless, I just knew I wasn’t “all that.” This acceptance (or perhaps, defiance) is what started the search to find others, and I’m so thankful I did.

Today, more than 330 SCAD survivors are connected via the WomenHeart online community and facebook. But this tally doesn’t include dozens who have approached Mayo Clinic directly to participate in the SCAD clinical trials underway there.

In a happily-ever-after twist — as my dog, Arley, recently learned — I’m not all that. I’m one of many, and very grateful to be so.

In a nod to the adage “if you can’t say something nice,” I’ll be brief. A month ago, I applied and was accepted to participate in a taping of the Dr. Oz Show. The several staff I spoke with over four days assured me that I would go back stage, meet Dr. Oz, talk with the producer, and either tell the story of my widow-maker heart attack or be allowed to comment from my seat in the audience.

It was an dream opportunity: a nationally televised discussion of heart disease in women that would touch on spontaneous coronary artery dissection (SCAD), an under-diagnosed form of heart attack that debilitates and kills an unknown number of healthy people every day. Yet neither you, your neighbors, or your doctor know about it.

Unfortunately, here’s where the “…don’t say anything at all” part comes in. Literally.

The show did a tremendous job with the critically important topic of women and heart attack. The animations were incredible, Rosie O’Donnell was gracious and riveting as she shared her story, and all the key information about preventing heart attacks was reviewed. But, without my story, the discussion had a gaping hole. What do you do if your heart attack can’t be prevented?

With SCAD, there are no risk factors to monitor. It doesn’t show up in blood work. Our cholesterol numbers are great, our blood pressures low, and our overall fitness considered healthy. Some SCAD survivors, in fact, are bona fide athletes. Many of us have recently given birth, which is kind of a triathlon in it’s own right! So to present to the world that the only heart attacks that matter are those that “should be” prevented through habit changes, diet and exercise, is to cruelly dismiss the SCAD population for a cardiac mystery that truly attacks. SCAD does not build throughout a lifetime. It strikes.

Complicating matters, the trend of ostensibly blaming women for their heart attacks undermines the progress that has been made in getting women to take their symptoms seriously and seek care immediately. Don’t we all tend to rationalize unpleasant things rather than meet them head on? If a woman’s heart attack might be viewed as “operator error,” will she listen to her body or try to avoid reality at all costs? In the case of SCAD, flip the view to that of the ER doc, who the majority of the time, will NOT perceive a younger, fit female presenting with heart attack symptoms as a cardiac patient.

So how can we work to truly prevent ALL heart attacks? Through research. And that is the message I’d hoped Dr. Oz would help spread, for the benefit of cardiovascular disease patients across the spectrum. Let’s stop worrying about putting “a face” on heart attacks and get to the root causes of why women are treated differently at our ERs and doctors’ offices, and why women are referred to cardiac rehab at a rate of only 20 percent. Let’s understand the psychology of women’s heart health. Let’s learn how genetics play a role in coronary artery disease, and along the way, prevent unnecessary deaths from SCAD.

Each research effort would inform the others. And that’s not smoke and mirrors.

Through Mayo Clinic’s ongoing SCAD clinical trials, the team has already uncovered information to improve treatment. At the AHA2012 conference on November 5, Dr. Marysia Tweet presented findings that the pristine arteries of SCAD patients tolerate a stent less successfully than an artery with atherosclerosis. To read the abstract and for more information on SCAD, check out: http://www.facebook.com/pages/SCAD-at-Mayo-Clinic-Spontaneous-Coronary-Artery-Dissection/440175972694809

And really, what doesn’t? Whether it’s too much or too little of one thing. A lack of awareness or addiction to something else. Or, just flat getting smacked down by the universe…run over by a truck or struck by lightening, for example. One day, it’s our time.

But until then, what doesn’t kill us makes us stronger.

First apple picking @ 18 months

This post is in honor of my SCAD baby. You may not know what that means, because SCAD survivors are as yet a small, concerted group. SCAD stands for “spontaneous coronary artery dissection” and this under-diagnosed form of heart attack almost took my life after the birth of my second son. He, no doubt, is the strongest person I know.

Today he began 4th grade. When he was 7 weeks old, I nearly forgot he existed.

On that day, I was having a heart attack. An inexplicable heart attack at age 38 from SCAD. At that moment, I knew I was a mom, but the details were fuzzy. I was saying good-bye.

My mother was there (thank God), my husband was leading me down those cussed 13 steps of our house for the second time in three days to run red lights to the ER, and … I said good-bye. That sounds so pedestrian, but to be fully prepared to cash out at 38 with a 2-year-old and nearly 2 month old — both beautiful and off the charts — is nothing you can imagine or appreciate. I died that moment.

But my children resurrected me. Those red curls and green eyes of my first born. The white cotton top and deep sky blue eyes of my second. They drew me back.

Over time, we became the team that we are today. I am fortunate for the family support that kept us afloat. Yet to say it was hard, brings me to tears. The lowest low was to hear my SCAD baby at age three lock me with that steely gaze and say of his brother: “Why does he have a mommy and I don’t?” I assured him I was his mommy, but he shook his head resolute. “You’re not my mommy.”

What doesn’t kill you makes you stronger.

Please learn about SCAD. Save a life, save a family.

http://www.facebook.com/pages/Spontaneous-Coronary-Artery-Dissection-SCAD/229928783729665

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A child of the 1960’s takes a look back to appreciate the communication tools of today.

A Spoonful of Technology …

(With thanks to Mom, for grinding up all those pills, and heartfelt good wishes to my new West coast friend!)