An anniversary wish

Each year when the anniversary of my heart attack rolls around, I do something to mark the date.

That first anniversary, in 2010, was the most emotional. From listening to other women's experiences, I knew to expect something of an emotional roller coaster. Paul's mother was in the final stages of the cancer that took her life, and he was down in Florida spending as much time as possible with her. So I invited a very small group of friends to be with me to help me celebrate, and they stayed with me as I went from being thrilled to be alive one minute, to crying the next.

The second anniversary, in 2011, was more upbeat and was dinner out at my favorite restaurant with Paul and a few friends.

This year, the third anniversary, the word seems to be "introspective." I woke up around 4am and my brain was going, thinking in particular about a recent news item from the UK, where a woman had shown up at the A&E (their equivalent to our ER), had three abnormal EKGs, but was discharged with no treatment, and she died a few hours later. How many women have to die before our cardiac symptoms are taken seriously?

Every day, I'm grateful to the hospital staff who no doubt saved my life. The ER doc could have easily sent me home, with my normal EKG, no heart damage visible on the chest X-ray, and no elevated cardiac enzymes on the first round of blood work. My dissected artery would have continued to tear, and probably would have torn completely the next time I did any exercise. My friends and family could have been marking a very different anniversary today.

In October of 2009 I trained at the Mayo Clinic in Rochester, MN to be a volunteer women's heart health advocate, a WomenHeart Champion. Here in 2012, getting the word out is just as much of an uphill battle today as it was then. We need to get women as aware of heart disease as they are of breast cancer, and we need to get the medical community on board with accurate diganosis and treatment of women with heart disease.

On this third anniversary of my heart attack, this is my wish: that every woman talk to her healthcare provider about her heart disease risk, that every woman who seeks medical help for heart attack symptoms gets accurate diagnosis and effective treatment, and that no more women have to die because it couldn't possibly be their hearts.

The two H's: Honored and Humbled

A few nights ago I, along with fellow SCAD patient and SCAD research instigator, Katherine Leon, was honored and humbled to be one of the 2012 Woman's Day Red Dress Award winners. It was a tremendous once in a lifetime experience, and I am so grateful to have been part of such a wonderful evening, surrounded by inspiring people all united in the fight against women's heart disease.

Several people have asked, so here's the text of my award acceptance:

This award doesn't belong to me.

It belongs to every woman who’s ever been told she's too young for heart problems.

It belongs to every woman who's ever been sent home from the emergency room and told that her crushing chest pain is just acid reflux.

It belongs to every woman who's ever been told that it's all in her head.

It belongs to every woman who's ever spent a sleepless night staring at the ceiling, wondering how she could possibly have had a heart attack at her age.

It belongs to every woman who's never met another person with the same diagnosis.

It belongs to everyone who’s ever been told, "There's nothing to research."

It belongs to all the women who are no longer here, because it couldn't possibly be their hearts.

On behalf of all of those people -- all of US -- thank you.

Thank you to WomenHeart, and to the WomenHeart Support Community on Inspire, which was a lifeline for me when I was newly home from the hospital, scared, with no one to talk to.

Thank you to Katherine Leon--none of this would have happened without her, and the years of work she's put in. I have been honored to share a small part of this journey with her, and I look forward to continuing to work together as we reach out to SCAD survivors across the globe.

Thank you to Dr. Sharonne Hayes, for saying "Yes." Thank you to Dr. Marysia Tweet for all the work on the SCAD study pilot and the two subsequent studies.

Thank you to John Novack of Inspire, for introducing me to the concepts of participatory medicine and the broader world of e-patient advocacy.

Thank you to my wonderful husband Paul, who's been with me on every step of this journey, starting out at the hospital in my Batman jammies--if I'd known I was going to be wearing them for a week, I might've dressed up a little...

Thank you to my family, here tonight, who provided tremendous love and support and didn't waver in the face of this rare, frightening experience.

Thank you to the wonderful community of SCAD survivors; fantastic women who reach out to each other from all corners of the world.

Thank you to my cardiologist, Dr. Cody Deen, who cares for the whole patient, not just my heart.

And thank you to Woman's Day, for taking on the tremendous task of raising the profile of women's heart disease. We're all in this together. Thank you all, and good night.

A Zebra Among Horses

Almost three years ago, I had a heart attack at the age of 40, with no family history or elevated risk factors. I'm not diabetic, I don't smoke, my arteries aren't clogged, and at the time, I was training for a triathlon.

I was in shock to wake up one morning with textbook heart attack symptoms -- pain in the center of my chest that radiated down my left arm and up into my neck and jaw, I had cold sweats, I felt nauseated.

My husband drove us to the hospital, where they treated me as if I were having a heart attack--they gave me a nitro patch, an aspirin, drew blood, did a chest X-ray and an EKG--all the while telling me that it wasn't my heart, because I was too young and too female.

Round two of bloodwork proved them wrong, and a pole-axed doctor came to my room that night to tell me that even though he'd put the odds of me having had a heart attack at less than 1 in 100, I had indeed had a heart attack. A cardiac catheterization procedure the next day showed the cause: my right coronary artery had torn in a corkscrew pattern.

I'd experienced a rare thing called a spontaneous coronary artery dissection, or SCAD.

Only a few thousand SCADs happen in the US every year. Mortality rates are on the decline, thanks in part to better, faster treatment, but a SCAD can still be fatal.

Coronary arteries are constructed in three layers; a dissection is when part of the inner layer tears away, and the tear creates a sort of flap where blood gets diverted from where it should be going (to the heart).

It's like when the lining of your favorite coat tears, up near the shoulder, and you accidentally put your arm through the space between the torn lining and the outer layer of fabric, but since the sleeve and lining are still sewn together at the wrist, your arm can't actually come out where it should, at the end of the sleeve.

Your trapped arm is like the blood in a dissected artery that can't get to its destination.

My right coronary artery was repaired with six drug-eluting stents--the stents are pushing that torn inner layer back in place and are holding it in position, keeping the artery open.

After a week in the hospital, I was able to come home. I was referred for 12 weeks of cardiac rehab--a medically supervised exercise program. At first, I saw my cardiologist every six months. Now it's down to once a year.

I realize how extremely fortunate I am. If you and I ran into each other in public, unless you either noticed my medic alert bracelet or ran off with my wallet and saw my stent location cards, you'd never know that there's something wrong with me.

I don't look sick. Most days, I don't feel sick. I take a few pills every morning. Nineteen months after my spontaneous dissection, I finally competed in the triathlon I'd been training for.

I count my blessings and try not to take anything for granted. I feel fortunate to be able to take myself to the bathroom, without calling for help and without towing a metal tower of wires, monitors, and IV drips along with me. I can get out of bed every morning under my own power. I'm usually not in pain. I don't have any restrictions on my activities.

But I think I will always carry the memory of hearing one of the doctors say, during my catheterization, "Has anyone ever seen this before?"

And having no answers as to why this happened and what the odds are of it happening again, can be hard realities to come to terms with.

That’s why I'm so excited that Mayo Clinic is doing not one, but two studies on SCAD, at the instigation of fellow SCAD patient, Katherine Leon. After her own heart attack and SCAD, Katherine wouldn't take "It's a rare condition, there's nothing to research" for an answer.

There's info on the studies here: http://newsblog.mayoclinic.org/2011/08/17/scad-spontaneous-coronary-artery-dissection-studies-at-mayo-clinic/

Inspire hosts an active online patient community for women with heart disease (they also host groups for a vast array of other conditions, some rare, some not): https://www.inspire.com/groups/womenheart/

There are something like 200 SCAD survivors, from all corners of the globe, concentrated in that one spot online. SCAD is under-diagnosed enough that most of us don't know another survivor in person, so being able to connect online has been a real lifesaver for us.

In 2009, when Katherine first approached Dr. Sharonne Hayes about researching SCAD, Katherine was able to point to all the women of this online community who are anxious for answers and motivated to participate in research on our condition, provided we could find some research to take part in.

Dr. Hayes said "Yes" to Katherine and to researching SCAD. The pilot study results came out last year, and that study spawned two new, ongoing ones.

This is the spirit of "Alone, we are rare, but together we are strong," the theme of this year's Rare Disease Awareness Day on Feb. 29th.

You've probably heard the adage, "When doctors hears hoofbeats, they think of horses, not zebras." Those of us with rare diagnoses are zebras.

Most of the time I don't feel sick, and I don't feel like a zebra. What brings it back to my awareness is when someone else, sent home from the hospital after being patted on the head, told how rare her condition is and how lucky she is to have survived, but with precious little other info, shows up in our online community of SCAD survivors--scared, confused, and looking for answers. Then I am reminded that we're not just survivors, we're a herd of zebras.

I had another zebra moment in cardiac rehab, on the day the nurse was giving us a lesson in properly taking our medications. At one point, she paused, looked at all of us, and said, "Let's face it: you all did something to bring yourselves here." I wanted to raise my hand and ask her to explain to me exactly what I'd done to cause my right coronary artery to dissect, but that would've derailed the class, so I kept silent. At that moment, I felt very much alone.

One zebra in a pasture of horses stands out--a freak, an anomaly, a 40-year-old woman in a cardiac rehab class of men in their 70s.

A few miles down the road, though, there's a whole pasture of zebras. Find your pasture. We're here, and we understand.

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.

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.

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?

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.