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 my friend and 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/

Katherine and I are active on the online patient community, Inspire. There, we participate in the WomenHeart online support group: https://www.inspire.com/groups/womenheart/

There are something like 200 SCAD survivors, from all corners of the globe, concentrated in this one spot online. SCAD is rare 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 our vibrant 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.

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.

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.

Why?

This article, that's why.

http://www.fiercehealthcare.com/press-releases/social-media-has-role-delivery-healthcare-patients-should-proceed-caution-e?utm_medium=nl&utm_source=internal

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.