Tuesday, December 27, 2011

BPA and the Female Heart

BPA, or bisphenol A, is one of the components in hard, clear plastic -- those ubiquitous refillable water bottles and baby bottles, as well as in the linings of canned foods.

Now researchers at the University of Cincinnati, in an NIH-funded study, have shown that BPA affects female hearts: http://www.sciencenews.org/view/generic/id/337035/title/BPA_sends_false_signals_to_female_hearts

What struck me is that the researchers are calling this a "gender-specific vulnerability to arrhythmias."

I'm hoping that this is a positive development in researchers realizing that males and females are not identical and research that just includes males is not automatically applicable to females.

Wednesday, December 7, 2011

Pro Heart, Pro Holiday

I'm still at the stage where it's absolutely thrilling to see my name and story in print; hopefully I'll never get so jaded that I become blase about these things.

Bayer has a website called I Am Pro Heart, aiming to educate women about heart disease. There is, of course, a profit motive too; Bayer sells aspirin, and daily aspirin is often recommended for patients who've already had a heart attack or stroke.

There's also a large gallery of patient stories on the site and a link for you to submit your own heart survivor story.

This is mine. I sent it in several months ago and for a few weeks was checking the site every day to see if it showed up. It never did, so I eventually quit looking. I went back to the site today for something else, and there it was. Yay!

So this post isn't *entirely* (just mostly) navel-gazing and me-me-me, I'm going to provide a link to my fellow WomenHeart Champion Carolyn's wonderful HeartSisters blog. Carolyn always has useful, interesting things to say and if you're not reading her blog, you're missing out.

Since it's December, I'm linking to her excellent piece, Best Gifts for Heart Patients. If you have someone on your holiday list who's a heart disease survivor and you're not sure what might make a good gift, check out Carolyn's excellent suggestions.

Monday, November 14, 2011

Medical Sexism - being heard while female

My heart attack was in March of 2009. Seven months later, in October 2009, I jumped into women's heart disease advocacy via attending the WomenHeart Science & Leadership Symposium at Mayo Clinic in Rochester, which is a five-day intensive training program for women with heart disease--they take around 60 women each year (all of whom have some form of heart disease), out of a large number who apply.

With the training we receive at the Symposium, we turn our passion and our personal experiences of heart disease into real-world skills in advocating, educating, and supporting women with or at risk of developing heart disease. We leave the Symposium as patient-experts, equipped to become community leaders in women's heart disease awareness.

Since mid-2009, I have staffed information booths at health fairs, attended events in people's homes, in churches, in country clubs; I've run a support network, I support women with heart disease online, I write a blog. While I'm not an old hand, I'd say I'm fairly comfortable with my women's heart disease advocacy--how to do it and what my own particular strengths are.

However, I'm a babe in the woods when it comes to the broader patient advocacy movement, as I wasn't aware, until around six weeks or so ago, that an organization like the Society for Participatory Medicine existed. Chalk it up to an intense focus on my particular issue, if you will. But the fact is, I have only very recently discovered this broader movement to foster engaged, educated patients who are true partners in our own healthcare.

For years now, the folks in this movement have been urging healthcare professionals to listen to patients, to see us as a valuable resource. Or as my new friend e-Patient Dave says, "Let Patients Help."

I want to be an active, engaged, educated, empowered patient. I have educated myself, I am active in my care, I speak up about my needs. I'd give myself a solid "B" on my ability to be an e-patient. Doing pretty well, still room for improvement.

Imagine my dismay upon hearing that one thing I can't change -- my gender -- is held against me:

'Medical Sexism': Women's heart disease symptoms often dismissed

From the article: "Cardiologist Dr. Adam Splaver says a symptom like shortness of breath is too often dismissed as anxiety among women.

'In training, we were taught to be on the lookout for hysterical females who come to the emergency room,' said Splaver."

I am thankful, in this season of giving thanks, that the emergency room staff took my classic heart attack symptoms--chest pain that radiated down my left arm and up into my neck and jaw, nausea, and cold sweats--seriously and treated me appropriately, even as they told me that I was too young and too female to be having a heart attack.

And even as they wrote in my chart, but didn't say out loud to me, that it was possible that I was just suffering from "anxiety," they did an EKG, drew blood, did a chest X-ray, and gave me a nitro patch and an aspirin.

As they talked about esophageal spasms or acid reflux, they admitted me overnight for observation, just in case. When the second round of bloodwork showed up with elevated troponins, a stunned-looking doctor came into my room to give me the news that I'd had a heart attack. In the back of my mind, I was not surprised. I wouldn't have insisted that my husband drive us to the ER if I was just feeling a little "anxious" (yes, I've had a panic attack before, no, this was something entirely different).

I am reminded of my fun with chicken pox--not shingles--as an adult, around 12 years ago. Growing up, neither I nor my siblings had ever had chicken pox. When I worked in a hospital in the mid-1990s, one of our interns from overseas got it and as a result, all of us in the office who thought we'd never had it had to troop over to the hospital's Infectious Diseases clinic and give up a couple tubes of blood to be tested. My sample was the only one that came back marked "No varicella antibodies." Further proof that I hadn't even had a sub-clinical case as a baby.

Fast-forward to late 1999, after Thanksgiving. A small, strange bump appeared on my chest. After a couple more appeared on my torso, I wondered if it could be chicken pox. I showed my female boss, who'd raised two children. She thought they looked suspiciously like early-stage pox, so I went to my family doctor. They said "impetigo" and sent me on my way, all of my protestations that by the way, I've never had chicken pox seemingly going in one ear and out the other.

As more and more appeared, my certainty that it was chicken pox, and NOT impetigo, grew. I went back to the doctor. This time, they finally listened. They put me on Famvir, which did no good but might have if they'd prescribed it when I first showed up--and told my husband to watch for possible signs of pneumonia or meningitis, had me coming in to the clinic almost daily so they could check me themselves, and even once pulled in a med student working there, to look at me, as mine was a "very involved case" (IOW, I was a medical curiosity for the first, but not last, time in my life).

They never once apologized for not listening to me. Sometimes I have those "going back in time" fantasies. In this particular one, I would grab my physician by the lapels and ask him to look me in the eyes as I said slowly and clearly, "I HAVE NO VARICELLA ANTIBODIES."

I am reminded that the "P" in SPM stands for "Participatory." To me, that means a give-and-take, a conversation, where both parties listen to each other.

I'm talking, but who's listening?

Thursday, November 3, 2011

Cranky Pants, round 2 (Bonus: Mansplaining!)

Just when I was getting settled for the night, putting on my comfy jammies, about to go downstairs with my husband to watch an episode or two of Castle... instead of relaxing on the couch with my husband and cat, I have to pull on the cranky pants once more.

I've just spent 45 minutes with a classic mansplainer telling all of us little womenfolk that we all needed to "be assertive" and "take charge of our health" and that our healthcare was "complex" and we needed to "take responsibility."

Ya think that I, a Mayo Clinic-trained WomenHeart champion and heart attack survivor, maybe need to educate myself on heart disease and heart health?

Ya think I need to maybe ask my doctor or nurse to explain my condition (which I know more about than they do) to me?

Ya think that I need to "take responsibility," and recognize that my health is "complex," and "be assertive" about my care?

Thank you for your contributions.

HIPAA, Heart Disease and TMI

Yesterday, I and another heart disease advocate worked all day at at table for WomenHeart, handing out information on women's heart health. My friend and I are both heart disease survivors.

At one point, a woman came up to our table and started telling me her story of postpartum cardiomyopathy. I said to her, "You really need to talk with _______," my fellow patient here; she's had post-partum cardiomyopathy, too."

My friend wrapped up the conversation she was having with another visitor, and I put the two of them together. I stood back and watched while they traded stories, exchanged contact information, and made a real connection with each other, since they had a shared diagnosis.

As our newest heart-sister walked away after hugging my friend, she said how great it was to be able to talk to someone else who'd been through the same thing.

Did I break a HIPAA rule by telling this new lady about my friend's diagnosis?

I don't know, but what happened yesterday wasn't unusual, at least in the patient communities that I participate in.

As longtime readers know, my own diagnosis is idiopathic SCAD (spontaneous coronary artery dissection), my right coronary artery repaired with six overlapping drug-eluting stents (DES). If you're curious, I can even tell you the make and model of these tiny bits of metal in my body -- Xience V, by Abbott Labs.

No one knows what causes SCADs, and there's no standard treatment. Some people who have dissections have a connective tissue disorder, some women are pregnant or have just given birth, and others, like me, just have them for no reason that we know of--that's the idiopathic category. As for treatment: some people get stents, some have bypass surgery, some are medically managed, and some get no fix (aka, the "watchful waiting" strategy).

When a new person shows up on the heart disease message board, sometimes one of us will say, "Oh, so-and-so has the same thing," same diagnosis, same treatment, same experience with side effects, whatever.

And we don't think anything of it; what we're doing, in our eyes, is accurately connecting patients with other patients who have something in common. Especially when we know that the one we're referring to may not check the message board very frequently anymore, we'll send an email: "So-and-so is new, has diagnosis/treatment X, and I know she'd like to hear from someone else in the same situation."

At Mayo's Social Media Summit a couple of weeks ago, there was a lot of discussion around HIPAA, patient disclosure, privacy, and keeping control of privileged health information. Which has me wondering, have we been inadvertently violating the law all this time and didn't realize it?

If so, how can we continue to support each other, while staying on the right side of HIPAA? Is HIPAA even concerned with patient-to-patient sharing, like we've been doing?

I honestly don't know. I'm freely admitting my ignorance on the subject and would love to hear various perspectives on the subject.

Wednesday, November 2, 2011

Putting on my "cranky" pants

Though some people would say that I never take my "cranky" pants off...

My brother has two sisters; he calls me the cranky one and he calls our older sister the cheap one.

Right now, cranky sister is cranky.


This article, that's why.


Specifically, the article's conclusion is what has me reaching for the cranky pants:

"According to Dr. Mukewar, 'one of the best resources for patients ideally would be physicians who also have health conditions and who can post a personal experience video on YouTube®, for instance, that would not only be medically correct, credible and trustful but would also contain that first-hand experience that patients with a disease like IBD really crave and search for online.'"

The idea that we would need, or even want, a patient-MD to blog about every possible rare disease is just mind-bogglingly ... I don't know.

I'm so cranky I'm at a loss for words.

For one thing, rare diseases are... what? RARE.

What are the chances that a doctor actually has a particular rare disease in the first place?

While having a rare disease does tend to make you an expert in that disease, it doesn't necessarily make you a good communicator if you weren't one already.

And lastly, just because someone is an MD and has a white coat doesn't mean they can't be a quack, or unscrupulous, or any more or less trustworthy as a source than we, the patients, are.

grump, grump, grump.

Thursday, October 27, 2011

Tweet-Chat tonight, 8pm EDT, on patient-initiated research, advocacy & more

My first-ever tweet-chat will be tonight at 8pm EDT. Tweeting with me will be my fellow SCAD patient, Mayo co-presenter and friend, Katherine Leon.

Stop by, and ask questions! We're going to be focusing on patient-initiated research, what it means to be an e-patient and a patient advocate, and more.

Details here.

Also, if you're not already following me on Twitter, I'm @LauraGHC.

Sunday, October 23, 2011

HHS wants US--patients!--to participate in grant reviews

That's right, patients, everyday, ordinary patients like us--are being asked to join in reviewing grants next year.

e-Patient Dave has a great, non-technical breakdown of the easy application process.

Longtime readers of my blog know that one of my passions is encouraging more women to participate in heart-related research.

This is a step better; it's a chance for patients to actually shape the direction of new research.

We're being invited to the table. The chair's been pulled out for us. Will we sit down and make our voices heard?

Friday, October 21, 2011

Mayo Social Media Summit & Residency

Last day of Mayo's first-ever Social Media Residency.

I'll have to compose my thoughts in a more organized way later; it's been a wonderful experience full of meeting fantastic people with inspiring ideas, on uniting patients, opening communication with healthcare providers, using social media to best advantage, and more.

Meanwhile, here's a quick picture from Tuesday's "Power of the e-Patient" panel. From left to right, seated in the yellowish chairs: Dr. Sharonne Hayes, Dr. Marysia Tweet, Traci Klein, me, Katherine Leon (my fellow SCAD patient), and moderator Chris Gade:

So many people came up to us afterward to say how much they enjoyed the panel, how enlightening it was to hear the patient perspective. I have actually found it a little surprising that people are treating the hearing of patient voices as a new, shiny thing. Have healthcare providers really and truly not been paying attention to us, their customers?

More on that later. Right now I'm in the middle of the blogging panel at the Social Media Residency, on Blogger vs. Wordpress...

Monday, October 17, 2011

SCAD comes to About.com

About.com has picked up the SCAD story and is covering it:


I left Trisha a comment, hopefully clarifying a couple of points--but it's great that a big site like About is also covering the story.

Thursday, October 13, 2011

SCAD Ladies Stand Up: Stories of Patient Empowerment

My partner in crime, the other half of our "Dissection Duo," aka my friend Katherine--she and I, and Dr. Hayes (the courageous cardiologist who agreed to take us on as a group and study us--at 100% Katherine's instigation), and several other SCAD survivors tell our stories here:

The SCAD Ladies Stand Up: Stories of Patient Empowerment (note: it's a PDF).

Thanks to John at Inspire, and the whole team, who worked to put this piece together and publish it.

Saturday, October 8, 2011

"Disease-mongering"? LOLWUT?

A blogger on the Forbes.com site thinks that Go Red for Women's recent video, starring a 37-year-old Elizabeth Banks, is just "disease-mongering," and is a thinly-veiled attempt to get young women to go shop at Macy's since Macy's is one of the sponsors of the video. This ill-informed... person... also accuses the AHA of trying to cash in on some of the "pink money" that flows so thick and fast to breast cancer research.


Ring-ring, clue phone for you: heart disease kills SIX TIMES AS MANY WOMEN AS BREAST CANCER.

Also, the age group that has shown one of the biggest recent increases in rates of developing heart disease? 35-45 year old women.

Around 80% of heart disease is preventable, especially if you start early.

Forbes.com, you screwed up. You need to post some actual facts, an apology, and a retraction from this author.

Wednesday, October 5, 2011

Mayo Clinic's Social Media Summit

In just under two weeks, I will be at Mayo's third annual Social Media Summit. My SCAD-sister Katherine and I, plus the authors of Mayo's pilot study on spontaneous dissections, will be on a panel together.


I'm slightly nervous but also looking forward to it. I hope it brings more attention to the two new SCAD studies that Mayo is doing, and that we garner more participants in the research.

Tuesday, September 13, 2011

SCAD studies now on clinicaltrials.gov

Longtime readers will know that I love pointing people to clinicaltrials.gov, to seek out research that we can participate in.

It's one of the most comprehensive and reliable sources for that kind of information.

Now Mayo's two SCAD studies are listed on clinicaltrials.gov,




This is excellent news, and I hope the listing leads other people -- men and women both -- who've had dissections to participate in the studies.

Wednesday, August 31, 2011

Medical Edge segment on SCAD

My fellow SCAD-sister, Katherine, and I -- plus Dr. Hayes -- filmed a segment for Mayo for their "Medical Edge" series. Here we are!


Tuesday, August 30, 2011

Spontaneous Dissection Study in Wall Street Journal

Another friend referred to this as "my" 15 minutes of fame. No. I'm too introverted; I don't want fame for myself, I want it for SCADs.

Here's today's story on Mayo's new SCAD research and how it happened, from the Wall Street Journal:


Many thanks to my heart-sister Katherine for encouraging Dr. Hayes to take on this study, and to Dr. Hayes for agreeing to it. This all happened at Katherine's instigation and she gets 100% full credit for talking to Dr. Hayes.

Here's hoping we'll someday have some answers.

And see, this is what I mean when I say that women's heart disease research is so crucial. We're doing our part to add to the medical knowledge about women's heart issues, and I'd encourage other women to participate as well.

Edit: Sorry some people are having trouble with the Wall Street Journal link. Here's an alternate from Forbes.com:

Sunday, August 21, 2011

Life Post-Dissection and Heart Attack

Sometimes it's hard to explain to people how my life is different than it was before my spontaneous dissection and heart attack.

Here's a few examples.

Every so often, I like to change things up -- get a new purse, get a new, different color or style of wallet, etc.

Before, I could make my choice solely on finding something I really liked.

Now, my wallet purchases are based primarily on whether my two stent cards, pictured below, will fit. If they don't fit, it doesn't matter how much I love the potential new wallet; it's not coming home with me:

The cards are laminated to preserve the information; thus, they don't fold up neatly to credit-card size.

Another thing. Before, if I was sick and wanted some chicken soup, I could just buy it at the store.

Side note: Cooking is not my forte and it's not something that I enjoy. I realize that other people do, but I've never been particularly good at it, and my repertoire of dishes that I make and that taste acceptable is fairly small.

But now, thanks to having to watch my sodium intake, eating a bowl of chicken soup is no longer a spur-of-the-moment whim--seriously, check out the sodium content on most soups, and remember to double the number because even the microwavable bowls are two servings. And recall that healthy sodium intake is 2,000 mg/day, ideally less. You can get that in a single bowl if you're not careful.

Healthy Choice's Chicken with Wild Rice is a typical offering in the microwave chicken soup category; if you eat the whole bowl, you're getting 900 mg of sodium in one sitting -- because honestly now, who eats just half the bowl? It's not like you can really save it.

This means that if I want soup, I have to make it myself, and let me express my gratitude to whoever it was who invented the slow cooker.

Last night I spent a couple of hours chopping up chicken breast, chopping assorted vegetables, cooking the chicken, then putting everything in the crock pot so that eight hours later, I have a big batch of low-sodium soup, like so:

I'm having a tooth pulled (back upper left molar) tomorrow, you see, and have been warned that I'll probably be eating soft foods for several days after. So instead of going to the store and buying several cans of soup, I spent part of my weekend making it from scratch.

Now maybe these are things that wouldn't upset the apple cart of your life--if you love cooking, and if you're less fickle than I am about your purses and wallets... and don't get me wrong, I don't sit around wringing my hands about my limited accessory choices or the fact that I have to do a lot more advance meal planning--it's just the way my life is now, and it's different--more complicated--than it was before.

Wednesday, August 17, 2011

Big news! Mayo announces SCAD studies!

I cannot tell you all how excited I am to see this.

Mayo Clinic is now doing two studies on Spontaneous Coronary Artery Dissections.


This is huge. SCADs are so rare and so poorly understood, to have a prestigious institution like Mayo taking an interest and doing studies is fantastic.

Here's to advancing medical knowledge!

Monday, August 15, 2011

Research Studies & Clinical Trials

Today's topic is again research studies and clinical trials.

I've covered this before, but it's important, especially for women, because as far as cardiac research is concerned, only around 27 percent of the participants are female, despite the fact that heart disease kills more women than men every year.

The Clinical Trials.gov website is still one of the best resources for finding studies.

Also, don't be shy about letting your cardiologist know that you're willing to participate in research.

That's how I found out that I'm not a poor Plavix metabolizer. When the news came out early last year that some people may be taking Plavix and not responding to it, I talked to my cardiologist, and he got me into a study that a colleague was conducting.

All it cost me was some time--one appointment, essentially--and a couple of vials of blood, and a week or two later, I found out that I'm not in the 2 percent of Caucasians who are poor metabolizers. And my stats are now in this researcher's database as part of the study.

A lot of studies or trials are more time-intensive than the one above, and if I had been unlucky enough to be a poor metabolizer, my participation in the study would have been more extensive.

I know it's time-consuming to participate. I work about 30 miles from where I live, and the hospital and cardiologist who are following me are about 10 miles in the other direction from my work commute. I lose at least three hours of work every time I see my cardiologist, and as the cliche goes, "time is money."

But where would we be without these studies, without these clinical trials?

Not to go all melodramatic here, but it really is a matter of life and death.

Heart disease is still so poorly understood in women; we need to step up and do our part to help. If not us, then who?

Monday, August 1, 2011

BMI alone is not a good predictor of heart problems

New study out illustrates that Body Mass Index (BMI) alone is not an accurate predictor for cardiac problems:


They looked at medical information for over 200,000 people.

Their conclusion?

"BMI, waist circumference, and waist-to-hip ratio, whether assessed singly or in combination, do not importantly improve cardiovascular disease risk prediction in people in developed countries when additional information is available for systolic blood pressure, history of diabetes, and lipids."

In plain English: look at the blood work, not the shape of the person. If your numbers--blood pressure, blood sugar, and cholesterol--are good, don't let medical people browbeat you with where you are on the BMI chart.

Now I'm not saying don't eat well and don't exercise, but if you're living a healthy lifestyle and the numbers back you up, don't let anyone make you feel bad if you're not where the BMI says you should be.

That's how I'm reading these results, anyway.

And note, this study wasn't funded by a drug company--it's always important to read the "funding" or "supported by" statements on these things. It was funded by the British Heart Foundation (similar to the AHA in the US) and the UK Medical Research Council (another nonprofit). So there's no hidden shilling for a product.

Tuesday, July 5, 2011

Gender-Based Disparities in Heart Disease Care

New report: Heart disease can sneak up on women in ways that standard cardiac tests can miss.

I volunteer with WomenHeart, running the Chapel Hill in-person support group. I got involved with them in 2009 after my own surprise heart attack at age 40.

Lucky for me, I had more of the "classic" male symptoms, so it was hard for the ER to brush me off when I came in complaining of chest pain that was radiating down my left arm and up into my neck, jaw and ear.

The report the article talks about is called The 2011 10Q Report: Advancing Women's Heart Health Through Improved Research, Diagnosis and Treatment. If you want to read the whole thing, you can download a PDF here:


It's a sobering look at the disparities in care that still exist in women's heart disease treatment.

We have to have a multi-pronged approach, not only educating women, but reaching out and educating the medical community as well.

Tuesday, June 28, 2011

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:


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.

Monday, April 18, 2011

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.

Wednesday, March 30, 2011

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.

Sunday, February 27, 2011

My guest post on Medical IDs

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


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.)

Tuesday, February 15, 2011

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?

Tuesday, February 8, 2011

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.

Wednesday, February 2, 2011

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:


Check it out, and share the link.

Friday, Feb. 4th: National Wear Red Day!

It's that time again--break out your finest reds, burgundies, and crimsons, everyone: shirts, skirts, slacks, dresses, ties, scarves, red dress pins, etc.

Friday, February 4th is National Wear Red Day, to raise awareness of women's heart disease.

Celebrate with the National Heart, Lung and Blood Institute's The Heart Truth:

Did you know: 250,000 women in the US die each year from heart attacks? Compare that with around 40,000 deaths from breast cancer.

Heart disease IS preventable--about 80 percent of cases, in fact. But the first step is making people aware that it's a problem.

So wear red on Friday: for you, for me, all the women in your life.