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“If the Civil War were still going on, I’d shoot you dead.” These were the words my mother heard from the first person she interacted with in South Carolina — a grocery store clerk — in 1976. The clerk was white. My Indiana born and bred mother of Irish-English-Scottish descent is whiter than white. The moving truck had left our quarters on the Charleston Navy Yard an hour before, my dad was at work, and mom took us kids – 12, 10 and almost 1 – to the Piggly Wiggly for some milk, eggs, and a loaf of Sunbeam.

As is the case with many military bases, the adjacent neighborhood was sketchy at best. Red light district. Seedy bars. But my mother was exhausted, her kids were hungry, and she was doing her best. The check-out clerk? Obviously not the sharpest tool in the shed, but her motivation was not ignorance. Her motivation was hatred, hatred of anyone who wasn’t her kind – whether black or white. The sight of a “Yankee” address on a check motivated the Confederate in her to issue that death threat to a total stranger.

In the heart-wrenching weeks after the massacre of nine Charlestonians at Emanuel African Methodist Episcopal (AME) Church, I’ve been reading and thinking about the Confederate flag controversy. Over and over, supporters of the flag claim it is a symbol of heritage. Opponents say the flag reflects racism of the worst kind. Each side stands by its own truth. But here is the question: Should our culture celebrate a symbol of heritage if its origin is hate?

The answer is: No.

Heritage (from Old French, “heriter,” to inherit) refers to “valued objects and qualities that have been passed down from previous generations.” We — no matter what our nation, creed or color — we cannot continue to allow hatred to be a valued quality that we pass from one generation to the next. Our time living on this Earth is short. Our charge while alive is to better the world for others. Hatred has no place here. Achieving this ideal is up to each of us.

Following the lead of Charleston as she mourns, we must put the enduring wounds of history in context. Our time is short. We must teach our children well: hatred is not heritage.

Blindsided by SCAD: Spontaneous Coronary Artery Dissection.

(Reprinted from the Uplifting Athletes blog)

Uplifting Athletes supports the larger rare disease community in addition to the rare diseases our 25 student-athletes led chapters champion. We welcome any rare disease organization to share their story with our audience. Spontaneous Coronary Artery Dissection (SCAD) is a rare, sometimes fatal traumatic condition that causes heart attack. The coronary artery develops a tear causing blood to flow between the layers, which forces them apart. Nearly 80 percent of SCAD cases affect women. The SCAD Alliance raises awareness and focuses on collaboration in the quest to empower survivors and health partners in the fight against this rare disease.

By Katherine Leon

It’s rare. You either die, need a heart transplant or get lucky … like you.

These words, spoken by my well-meaning cardiologist, still ring in my ears 11 years later. I say well-meaning because his intent was a bit of tough love to jolt me back to the business of caring for my newborn and 20-month-old sons.

But he wasn’t the one who’d had what is referred to as a “widow maker heart attack” out of the blue caused by a torn artery.

He wasn’t the one who was 38, never smoked, had pristine arteries, and lifelong blood pressure of 94 over 60.

He wasn’t the one who was struggling to recover from emergency double bypass surgery and a detached rib – collateral damage of the surgery.

And he didn’t have to worry if his kids would someday have a heart attack from a rare event that is now called spontaneous coronary artery dissection (SCAD).

My doctor had no pamphlet for me because he said the cause of my heart attack had never been researched. It was too rare to research.

In fact, he said I’d never meet another person who’d had SCAD.

It was really hard to understand that in 2003, a heart attack killing someone at such a young age had never been researched.

That day I made up my mind. Before I checked out of this world, I would get research started and make sure that anyone else diagnosed with SCAD would know exactly what happened, why, what to do about it, and – hopefully – how to prevent it from happening at all.

I would find the patients and bring them to the researchers. It seemed logical. If the reason SCAD hadn’t been researched before was access to survivors, how could researchers say no if the patients came to them?

My good fortune was to be alive in the age of the internet and searching online became my obsession.

When the boys were asleep at night, I would search for any and all terms related to heart attack, torn artery, dissection … whatever I could think of to find fellow SCAD survivors.

It took several years to find the first few people, but once our conversations became searchable in Google, the numbers began to grow. By 2009, I had a document that summarized the experience of more than 70 SCAD survivors worldwide and several family members of those who had died.

With data and a research agenda, I pursued an opportunity to meet a researcher.

While attending a heart disease symposium at Mayo Clinic, I got up my nerve to ask a cardiologist to be the first to research SCAD. From her background and role at Mayo, she seemed like the one person in the world who might just hear me out. And she did. It didn’t bother her that my fellow patients were people I’d never met in person.

She threw herself into the task of researching SCAD using participants I’d recruited on social media. After an intensive Institutional Review Board process, Mayo approved first a pilot study. And in September of 2011, a global registry of SCAD patients and a DNA biobank was launched.

The registry has grown to include nearly 400 participants. The DNA biobank holds several hundred samples.

Other institutions worldwide, including the University of British Columbia, University of Leicester in the United Kingdom, and Massachusetts General in Boston, have now launched clinical studies of SCAD as well. But there is a problem.

As encouraging as this progress sounds, every day patients go undiagnosed as we wait for the research to find answers. It is still common for patients to be told the heart isn’t the problem.

We’re young. We’re athletes. We don’t have traditional risk factors for heart disease. Doctors and emergency departments must be on the watch for SCAD.

Our average is 42 but we know men and women as young as 20 who are struggling with the aftermath of SCAD, which includes everything from depression to even heart transplant in some cases.

We must educate doctors while the science develops. The more we educate the more lives we save by preventing heart attack and sudden cardiac arrest from SCAD. That’s the mission of SCAD Alliance. Help us stop the blindside.

[This article was originally posted on Forbes.com.]

 3/03/2014 @ 11:51AM 1,959 views

Woman in the ER — Cue The Violins!

Why is it when a woman with chest pain enters the ER, the waiting room soundtrack switches from ‘80s soft rock to dramatic symphonic numbers? Even in 2014, it’s not unusual to sense a weary sigh among staff that yet ANOTHER woman “thinks it’s her heart.”

Well, it most likely is her heart. Heart disease is the number one killer of women, more than all cancers combined. Why is this still the case despite 15 years of WomenHeart, 12 years of the NHLBI’s Heart Truth campaign, and 10 years of AHA’s Go Red for Women? How can this be?

The ER doc who sent me home after I arrived at the hospital by ambulance with classic heart attack symptoms may offer a clue. As he completed my discharge papers, he explained, “It’s not our job to find out what’s wrong with you. Our job is to tell you what isn’t, and this isn’t your heart.” He pointed out the obvious (at 38, I was “almost 40”) so should get my gallbladder checked.

At the time, that struck me as an odd perspective from a medical professional. It’s one of those surreal moments etched crystal clear in my memory. Sure, it was 4:30 p.m. on a weekday and I was in sateen pajamas and a not-so-pretty nursing bra. And yes, I was definitely anxious and nauseous, but acid reflux didn’t quite fit with the experience I’d had that day. I’d finished breastfeeding my 7-week-old and was hit by a Wile E. Coyote-caliber anvil on the chest that mashed the air out of me and sent pain through my upper back and into my jaw. My arms went numb. I did in fact have a heart attack that day, and another three days later. Finally, on the sixth day, I underwent a cardiac catheterization and emergency double bypass surgery to repair the damage caused by Spontaneous Coronary Artery Dissection (SCAD), an increasingly recognized form of heart attack and sudden death, predominantly in women.

In contrast, the ER staff knew quite well that day what was wrong with the guy a few curtains over who was cracked out on PCP. Did they do a few scans, labs, and send him on his way saying, “It’s definitely not the drugs. Go see your internist.”? No, he hung out all day and seemed to be having a fabulous time harassing the nurses and exposing his genitals to anyone in range.

So perhaps the deck is stacked unfairly. Yet a snapshot of heart disease in women shows the urgency of our situation:

  • Heart disease kills 1 in 3 women. That’s approximately one per minute.
  • Ninety percent of women have at least one risk factor for developing heart disease.
  • The symptoms of heart disease in women often differ from those in men, and may be misinterpreted as a result.
  • Only half of women would call 9-1-1 if experiencing heart attack symptoms, but 79 percent say they would call to help someone else.
  • In the past 30 years, the rate of men dying from heart disease has gone down, but the rate of women continues to increase.

What do these stats tell us? To me, they firmly suggest that women need to step up. We need to apply the same care and concern to ourselves that we do to a partner or our children. To put the situation in perspective of the workplace: if a woman is at risk of losing a promotion to a coworker, would she draw the curtains, crawl into bed and resign herself to the loss? No. And if she would, then we have more fundamental issues to address as women before we can conquer our heart disease crisis.

Health care providers share the blame, and key elements of physician training must be fixed. We must determine what causes doctors to minimize patient concerns. What mechanisms can we put in place to supplement poor communication skills in both parties? How can compassion be built into the system, regardless of personality traits and prejudices? This isn’t just a matter of thinking outside the box; this requires an entirely new space — a sphere of ideas. Doctors need to understand what it is to be a patient, in every sense of the word. And women need to value themselves enough to demand the respect and care they deserve.

“It’s not our job to find out what’s wrong with you. Our job is to tell you what isn’t, and this isn’t your heart.” I can still hear those words, with a crescendo of violins in the background.

 

Katherine Leon is co-founder of SCAD Alliance, a nonprofit devoted to improving care and outcomes of Spontaneous Coronary Artery Dissection, an under-diagnosed cause of heart attack and sudden death. Katherine survived SCAD, heart attack, and emergency double bypass surgery after the birth of her second son. The ordeal marked a new beginning for her as an advocate for patient empowerment, women with heart disease, and her fellow SCAD patients. She initiated the first large scale, single-center research of SCAD in 2010, and continues to support survivors, their families, and health partners. @SCADalliance

 

Art Linkletter thoroughly proved that kids do say the darndest things. But when it happens at your own dinner table, you definitely must take stock.

I realized tonight that despite my valiant efforts at “normalcy” (whatever that is), I really wasn’t fooling my 10-year-old. He stated right to my face that he’d had quite enough of my meanderings through the healthcare system.

In response to my explanation about an upcoming hospital stay, he didn’t miss a beat: “Is it life-threatening?”

This is the kid who cuts me no slack. He’s the one who looks for buttons to push, always finds them, and even creates new ones. Face of an angel, soul of a hurricane. So, his question was a good one. Because yes, without the hospital stay, it is life-threatening. But with it, we — as a family — have fewer worries.

So the challenge as a mom is to not take this personally and to inject some humor. Does he really care that I’ll be away overnight? Of course not! It means late bedtime and possible x-box. Does he love me? Of course he does! I’m his mom.

Would I have it any other way? Not on your life.

It is Thanksgiving eve. Despite the recommended four-day refrigerator thaw, my bird is still frozen. While he takes a salt bath to “chillax” a little, I’ll be making a pie and prepping brussel sprouts. But, before I do … a moment at the keyboard.

This holiday will be the first for my family without my grandfather and my older brother. I was able to write a tribute post to Granddad but can’t yet put my brother’s passing into words. I’m not sure that I ever will.

There is something ultimately unfair that the 97-year-old died hale and hardy from complications of a fall, while the 50-year-old withered away in six months from cancer. A few days before his death, Granddad was whistling for the dining room waitress to bring him his chocolate pudding after each meal (poor form, but he did have a charming, dairyman’s way about him). A few days before my brother died, he was in hospice, writhing in unrelenting bone pain from esophageal cancer, which had metasticized to his lungs, kidneys, liver, spine…everywhere, it seemed, except his poor, suffering brain.

Oddly, in a way, they went together—just a few months apart. The day I helped transition my grandfather from the hospital to the hospice on the West coast of Florida, my brother confided he was too sick to make it over from the East coast to say good-bye. His back hurt terribly and he couldn’t keep food down. He said he preferred to remember Granddad as full of life as he was, so he wouldn’t make the trip. My mother and I urged him to go to the ER. He said he would let us know how he felt.

By the time my grandfather died, my brother had gone back to his internist, who sent him directly to the ER, which immediately admitted him with Stage IV esophageal cancer. I still don’t understand it. Probably never will. He was discharged to endure four months of cyberknife surgery, chemo, and radiation. The only time he admitted he was very ill was on the drive from the oncologist’s office to the hospice.

Realizing this is not the most “peppy” Thanksgiving post ever, my message is this: give thanks for what you have, when you have it. If we take competition and comparison out of the equation, we can each say we have lived life to the fullest. Life, ultimately, is a journey of one.

And now, back to the kitchen. Wishing you a peaceful Thanksgiving, full of who and what you love.

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!

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.

Rare  (Merriam-Webster)
Etymology: Middle English, from Latin rarus
Date: 14th century
1 : marked by wide separation of component particles THIN <rare air>

As awareness of spontaneous coronary artery dissection (SCAD) grows, and more patients (some say survivors) surface, it may actually be appropriate to equate SCAD with the concept of “rare air.”

When on a single day, a woman in the South Pacific on the island of Vanuatu and another in the Netherlands raise their virtual hands on the Internet to be heard as SCAD survivors, it does in fact seem that we are needles in a haystack … individuals marked by wide separation.

Social media lets us shake down that haystack and draw our “component particles” close together. And it feels great to be a growing group involved in the search for answers through the Mayo Clinic SCAD virtual registry and DNA biobank.

From NPR, “Patients Find Each Other Online to Jump-Start Research”

Also, the Philadelphia Inquirer, http://articles.philly.com/2012-06-26/news/32409745_1_heart-attacks-citizen-scientists-rare-condition

 

“… you can still wear a pretty blouse.”

These words were spoken by a gentleman cardiologist on a mind-bending afternoon at the Cardiovascular Technology Conference. To me, they generalize the lack of understanding many women experience as heart patients.

It all began with male and female cardiologists. In several different presentations, the speakers made reference to the idea that off-pump bypass was preferable for “a better cosmetic result.”

Back it up. Are they saying what I think they’re saying? That all we women-folk care about is a plunging neckline?

I reprogrammed my ears and tried again. Nope. The remaining speakers expressed the same concept. Off-pump or beating heart bypass offered the benefit of superior cosmetic result. No mention of reduced pain, stress, and potential complications during recovery.

Not a single cardiologist or surgeon mentioned improved PHYSICAL outcomes. It was all cosmetic.

Later, when a cardiologist attending the conference stopped at the WomenHeart information booth, I brought the topic up. It was so interesting, I suggested, that the speakers viewed women’s sole concerns as superficial, not physical. I explained I’d had bypass and ended up with two additional surgeries to complete a sternal closure because of complications.

He gestured to the scar peeking out of my neckline and said, “Well, it looks good.”

I attempted to drive my point home: “But think of the extra recovery time, not to mention medical expense and anguish, involved with a sternotomy.” I added it was surprising not one single doctor had mentioned these benefits to off-pump in the earlier talks.

My query fell on deaf ears. “Well, you can still wear a pretty blouse.”

Interesting.