Please take the Yale Heart Study

Hey everyone, if you've had a heart attack, the Yale Heart Study would love to hear from you:

http://heartstudy.yale.edu/hacs/

Message from the survey director:

"I am the director of the Yale Heart Study of how people get medical care when they are having symptoms of a heart attack. We are asking people who have had a heart attack to share with us their experiences at our study website: http://heartstudy.yale.edu/hacs/

The goal of this study is to help people get care as quickly as possible when they are having heart attack symptoms.

This survey of heart attack care-seeking is being conducted on the internet and takes about 30 minutes to an hour to complete depending on your experiences.

Participation in this study is completely anonymous.

The study has been approved by the Yale University Institutional Review Board and is funded by the National Institutes of Health. If you have any questions about this study please contact me at heart . study @ yale . edu" (remove the extra spaces in the address before emailing)."

The more people they hear from, the the better.

It took me around 30 minutes to finish, and there's space at the end to add as much info as you'd like about your individual situation.

Touching one life at a time

Just had to share this, since there are so few resources out there for us SCAD-ladies (SCAD: spontaneous coronary artery dissection). We ourselves pretty much *are* the resource.

A lot of cardiologists have never seen a SCAD, there's no standard treatment for them, no one has a definite answer on what causes them.

This is how we SCAD ladies do it, one on one, one SCAD survivor to another.

My husband and I have been on vacation this past week, no email, no Internet. I got home Saturday night and was reading my messages and found one from a lady who sounded so much like me, that I almost cried.

Two years ago, I could've written her email: she'd had a heart attack out of the blue--actually two, two days apart--in early April, doctors found out it was caused by a SCAD, they'd never heard of a spontaneous dissection before, and they sent her home with a handful of new drugs and precious little else.

She got my email address from the WomenHeart messageboard on the Inspire site and sent me an email, which I found while going through the messages that accumulated while I was out of town.

She's a few years older than me, but otherwise we could be twins--like me, she had no prior risk factors; this just hit her like a bolt of lightning. She's scared of it happening again, doesn't know where to turn.

I pretty much dropped everything else I was planning to do that night--unpacking, laundry, paying bills, cooking supper--and wrote her a long, reassuring email.

We are all holding hands: like the SCAD sisters reached out to me when I was newly home from the hospital and scared, now it's my turn to reach out to these new, scared SCAD patients.

Heart to heart, hand in hand, an unbroken line of support from one woman to another. If I can help one frightened, newly-diagnosed SCAD lady as much as the women I found helped me, I'll be content.

Two Years Ago

This time two years ago, my husband and I were sitting in the ER at UNC Hospitals. It would be another 8 hours or so before a doctor would say the words "You've had a heart attack" to me. Two years ago tomorrow would be the first time we'd ever heard of a spontaneous coronary artery dissection.

Today I'm grateful for so many things--my wonderful husband Paul, awesome family and friends who stood by us during that scary time.

No longer do I take for granted simple pleasures like sleeping in my own bed at night, curled up with Paul at my side. Sleeping through the night, uninterrupted every hour by the blood pressure cuff going off, or staff coming in every three hours to draw blood and take vital signs. The ability to walk from the bed to the bathroom, unconstrained by a metal tower of IVs and beeping, blinking monitors.

Blessed to be celebrating tonight with good friends.

Happy to be alive!

Hug your loved ones, and get out there and do something fun.

My guest post on Medical IDs

My guest post is now up on the blog for Lauren's Hope medical IDs:

http://blog.laurenshope.com/medical-id-jewelry-blog/bid/50610/Can-a-Woman-In-Her-40-s-Have-a-Heart-Attack

If you have a medical condition and don't already have an ID, I recommend one. If not from them, from somewhere -- the Internet will toss out a million options if you type the phrase "stylish medical IDs" in your search engine of choice.

Thanks again to my cousin, a retired EMT, who first convinced me that I needed one. He said that because of my gender and relatively young age, a first responder who found me unconscious wouldn't think "heart disease" first.

(For those of you playing along at home, I've posted the link above to my FB page and to the WomenHeart and heart disease communities on Inspire, as well.)


(Photo (c) Paul Cory, my husband.)

But what about the men?

At almost every event where I'm working in my capacity as a WomenHeart Champion, some dudebro will come up to me and say some variation on, "Where's the men's group?"

Then they get a smug look on their faces as if they've just scored a major "Gotcha!" and they scuttle away, oh so pleased with themselves for their clever little bon mot.

Oh honey, I want to say to them, it's ALWAYS about the men.

Almost 75 percent of the research on heart disease in the US is done on men; women comprise only 27 percent of heart disease research subjects in this country.

91 percent of family doctors are unaware that heart disease kills more WOMEN than men each year--medical professionals whose job it is to know these things DON'T KNOW.

Women who present with the exact same symptoms as men are often told that it's our gall bladder, it's anxiety, it's stress, it's acid reflux, anything but what it actually is--our hearts.

(Facts and figures above are from the WomenHeart website and the American Heart Association website.)

A study was done a few years ago where groups of doctors were given imaginary case histories for one of two patients, either a 47-year-old male or 56-year-old female. Aside from the age, everything else was identical. The two patients had all the risk factors for a heart attack; some of the case histories, male and female, also included a note about job stress.

In the case studies where stress was a factor, the majority of the doctors--a mix of family physicians and internists--referred the male patient to a cardiologist; the majority referred the female to a psychologist.

Read that again: the man gets sent to a cardiologist; the little woman gets told that it's all in her head.

(That's from a study done by Gabrielle R. Chiaramonte; details here.)

As if that's not enough, check out this ABC news video on ingrained, institutionalized medical sexism. Ladies, brace yourselves for a blood pressure spike:

'Medical Sexism': Women's heart disease symptoms often dismissed | abc7.com

Women are less likely than men to receive life-saving clot-busting drugs, less likely to even receive simple treatments like an aspirin or a nitro patch. Women are less likely to be referred for cardiac rehab. Women have a 28 percent increased risk of dying as compared to men within the first year after a heart attack (perhaps because of the fact that we're less likely to get adequate treatment, as noted).

(And those stats and figures are from, respectively: Dey S, Flather, MD, Breiger D, et al. "Sex-related differences in the presentation, treatment and outcomes among patients with acute coronary syndromes: the Global Registry of Acute Coronary Events." Heart. 2009;95(1):20-6; and Curtis LH, Al-Khatib SM, Shea AM, et al. "Sex Differences in the Use of Implantable Cardioverter-Defibrillators for Primary and Secondary Prevention of Sudden Cardiac Death." JAMA. 2007;298(13):1517-1524.)

It's not "us versus them" in that we women heart patients and advocates are taking something away from the male heart patients. What we're striving for is EQUAL access to correct diagnoses and treatment.

In order to do that, we have to address the current inequalities--you can't change the fact that because you're male, you're automatically going to be treated differently if you complain of chest pain than a woman is going to be.

In general, men don't have to fight to be believed if they show up in a doctor's office and say that they think they're having a heart attack.

We do. We have. Every single day.

That's part of WomenHeart's mission--to educate women (and men) about heart disease, our #1 killer, to educate the medical community, and to advocate for equal access and treatment.

We don't want to take away the men's piece of pie (access to accurate diagnosis and correct treatment); we want to ensure that everyone has pie.

And everyone wants pie, right?

Still Alive and Kicking

My husband is 43, I'm 42 (will be 43 in a few months). This is us:



Yes, I had a heart attack almost two years ago--about three months after the picture above was taken, in fact.

Yes, counting multivitamins, I'm on about 8 pills/day.

Yes, I wear a medical ID bracelet now.

Yes, I try to be in bed by 11:30pm most nights, especially worknights.

Yes, if I'm in a phase of being serious about my workouts, I hit the gym most nights after work, which does put a crimp in the ol' social life.

Because I'm not home and presentable until around 8:30pm, and I haven't even had supper yet.

I also don't want to go out to places that allow smoking, because my hair is tailbone-length, and washing smoke out of all that hair, then waiting for it to dry, takes a long time (using a dryer on it would fry it).

So that limits what I'm even interested in doing on a weeknight--no bands playing in smoky clubs, for example. On a weekend, it's easier for me to deal with getting all the smoke out of my hair and clothes. During the week, I just don't have time for that mess. Plus, I don't smoke, and I don't like breathing smoke. If there's a good enough reason, I'll put up with it, but really? I plain don't like it.

When I do go out, I don't drink more than two beers, at most. I can't remember the last time I was well and truly drunk, complete with hangover. Eventually I figured out that the cost-benefit wasn't working for me: the few hours of being buzzed weren't worth spending the entire next day feeling like someone was pulling out every single hair on my head, individually.

On the other hand, I'm *also* not gumming the 4pm K&W early-bird special, then hopping into my long granny flannel nightgown, taking my teeth out, pulling up my Depends, and going to bed by 7pm.

So what do I do on my weeknights after work and gym?

Sometimes I go out to events at bookstores: author appearances, book signings, that sort of thing.

I host a monthly book club meeting.

Once every two months, I host a women's heart disease support group.

My husband and I go out to dinner with friends.

We have board games nights.

A lot of times when I get home from work and the gym, after my shower, if I'm not going back out again, I'll get into whatever I plan to sleep in: usually lounge pants and a comfy shirt.

While I may be in my jammies by 8:45pm, by no means does that mean I'm going to bed at 8:45pm.

What it means is that I've gotten comfortable in my own home, and I'm relaxing after work and working out.

I have heart disease--but I'm still above ground. And I plan to stay that way.

SCAD--A Website of Our Own

If you've had a SCAD, a spontaneous coronary artery dissection, and have been floundering around, looking for information, being scared pantsless by outdated statistics that talk about how more than 70 percent of SCADs are only discovered on autopsy, etc., well, flounder no more. One of my SCAD-sisters has created a website to act as a gathering spot and clearinghouse for information:

http://www.spontaneouscoronaryarterydissection.com/

Check it out, and share the link.