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!

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The boys and I went to a movie on Friday. And it was so efficient!! And I kept thinking, “if AMC theatres can do it, why can’t Carefirst Blue Cross Blue Shield?”

Our “appointment” with “Wreck-It Ralph” was arranged electronically. In a very harried 15 minutes on my computer at home, I activate our frequent movie viewer card (we don’t see all that many) and purchased our tickets online. The frequent viewer card allowed me to waive the processing fee. It also allowed me to show up at the Swamp Fox 22, bypass the day-after-Thanksgiving lines, swipe my card at a kiosk to generate tickets, and proceed to the snack area where I received YET ANOTHER privilege in reduced prices. And then I enjoyed a movie on top of it all.

So my proposition is this: Carefirst knows everything about me; I even have a Carefirst debit card that can retrieve my high-deductible info in micro seconds.

Explain to me why Carefirst and my health care providers require me to repeatedly explain myself and my health care information to them? Why can’t it all be on my card (since most of it is already)? Just think: one swipe, and your medical history, benefits info, and payment summary could be transferred.

You’d receive efficient, appropriate care, and still have time for a movie.

Today’s theme is “I want to change THIS about healthcare…”

The word that first came to mind for me was disconnect. At a time when the greatest effort ever is being made to involve patients, integrate specialties and improve the health care process for all Americans, I still can’t help but feel there is a giant boulder in the way. Or some kind of undercurrent — like we’re buzzing along under the impression that all is well but not quite recognizing a key factor to success.

As always, it’s the little things that make me feel this way. My primary doctor, who technically should be my gatekeeper to care and coordinating my health, will no longer write prescriptions for drugs he isn’t doling out. I was so proud of myself for scheduling an annual visit where I could streamline care and not “over inflate” my copay use by seeing specialists. But my primary would not write refill prescriptions for me. Plavix? “Well, you’ll have to ask your cardiologist about that.” Eye drops? “Oh no, that’s up to your ophthalmologist to refill.” And so on.

Whatever happened to coordinating my total care? The primary doc’s role now seems truly to be “concierge” in the guest services capacity. My visits now consist of blood work followed by his recommendation to see a laundry list of specialists.

So if that’s the way it’s going to be, my primary doctor now holds only one purpose in my life: antibiotics for the occasional sinus infection.

Because I get the sense we don’t have a partnership any more. Rather than waste a copay on him telling me to see a specialist, I’ll just ramp up more health care costs for Carefirst BC/BS by seeing specialists at my own discretion. I’ve met my astronomical deductible, so what the heck — why not?

It’s a shame. We may have a hard working team of health care providers, insurers and advocates, but without a good coach, we can’t win. We need engaged, appreciated primary care physicians to lead patients to victory — even the smallest ones — in health care.

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

I realize there is a lot of huzzah and hurrah out there about the e-Patient — especially among those who have the skill or leisure to be well-connected to social media. At times, I believe I’m one of the empowered, engaged fold. But what about the f-Patient? The well-meaning, diligent user of social media who finds herself inexplicably … well, the most accurate way to put it is … “f’d” by the health care system?

In a one-night stay at my beloved local hospital, I found myself – seasoned cardiac patient that I am – misconstrued as a narcotics monger, migraine patient, and generalized neurotic, gaseous female.

I had my smart phone. But, no charger. As the hours progressed into double digits and I realized my predicament, the best use of my phone was to call my internist and cardio, because no one at the hospital had bothered to do so. I suppose I could have accessed the Internet at some point and drained battery, but to what end? Would it have furthered my progress? Doubtful. And besides, I was preoccupied with my roommate’s ongoing constipation/diarrhea issues on the other side of the curtain.

So, I battled my way through that hospital stay by enlisting the nurse, technician, charge nurse, and eventually, the cardiologists, to get some attention and eventual data. Upon returning home, bruised, battered, and covered in residual EKG/telemetry stick’em, I realized my truth: f-Patient. Or at least until I was charged up and had time on my hands to google, facebook and tweet.

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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Where the heck is the e-doctor? I’m slogging away trying to be an e-patient, among other things, but where is the doc who will meet me half way?

If you’ve been following spontaneous coronary artery dissection (SCAD) research developments, you know that fibromuscular dysplasia (FMD) is a recently confirmed associated condition. Perhaps even a cause. Time will tell.

Well, let’s just say I have kids. And one of them dissected an intestine after a routine GERD workup when he was five, and spent three weeks in the hospital and a year transitioning back to solid foods. Then, let’s pretend that he had excruciating “abdominal migraines” for two years and began classic migraines at age seven. As his mom, with a history of SCAD and a healed carotid dissection from suspected FMD, I’d probably be doing my job to get said child evaluated. Right? I’ll take that as a yes.

So guess what his MRI/MRA order read? Go on. You will never get it.

It said, “family history, headache with cough.” And this is at Children’s National Medical Center…in our nation’s capitol. No mention of artery dissection. No mention of FMD. Nothing.

How can things get so flippin’ discombobulated? How can I trust that the report I received is accurate? Especially since the mom in charge (me) was so hysterical that she took her child to a neurologist for “severe headache, increasing with cough.”

The report says he’s fine. I wish I could believe it.

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!)