Archives for category: patient advocacy

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.

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.

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

 

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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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!)

The other night, I had a very long, involved phone conversation with another spontaneous coronary artery dissection (SCAD) patient. She is early in her recovery, still in the “crawling out of the sink hole” phase where even though you think you are making progress, the walls keep sliding down on top of you. Much like a romance-induced broken heart, getting over a torn artery — physically and mentally — takes time.

With my recovery from SCAD I was fortunate, in a way, that I had double bypass surgery to reroute blood flow of the affected arteries. With surgery, I felt a bit as though the problem was “fixed.” In my mind, I do tend to think of my SCAD as a mechanical failure that was repaired.

The woman from the phone call doesn’t have faith in her situation yet. It is still too new. Although we had messaged on a social media site, a voice-to-voice phone call was invaluable in understanding her mindset.

And that is where I cannot help. I can empathize. Concur. Advise. But it is she who has to take up the yoke of SCAD and say, “you know what, screw you.” Because in the end, that is what makes the difference in managing our health. We can obsess. We can complain. And, we can fret.  But ultimately, whether we help ourselves — or even others — is up to us.

No right. No wrong. Only a best effort.

First 5K for SCAD Research begins, May 5, 2012.

With a cut of the ribbon, the first 5K walk to raise awareness and funds for spontaneous coronary artery dissection (SCAD) research begins. With 25 SCAD survivors in attendance, the crowd of 175 kicked off a joyful day in honor of those not with us, and raised more than $20,000, which goes directly to funding research of this commonly misdiagnosed form of heart attack.

Walks were held in UK, Canada, Colorado, and California at the same time.

http://www.dailyherald.com/article/20120503/submitted/705039849/

http://www.meltontimes.co.uk/news/health/health-news/heart-survivor-34-backs-vital-research-1-3837124

Strong presence in UK of SCAD solidarity!