Guest Blog: Teri Thom, North Vancouver, BC, Canada

Today, I'm turning over my blog to a fellow SCAD sister, Teri Thom. She's the one who designed the lovely "SCAD Sisters" logo that I've shared before and which graces this post, as well.

Like so many other SCAD survivors, she's in excellent physical health and didn't have any of the traditional cardiac risk factors. This is her story, in her words.

My SCAD Story (Spontaneous Coronary Artery Dissection)
Teri Thom from North Vancouver, BC

June 16th 2010, evening
I had a heart attack, and didn't know it. I was deeply immersed in playing a video game (a 3D MMO) engaged in hard core combat :) It started with pain radiating up both of my arms and across my chest. I thought it was overtrained muscles from my previous day's workout along with some minor indigestion. I tried to self medicate with tylenol, antacid and massage - first mistake! My husband fell asleep at the normal time and I didn't want to bother him - second mistake! Finally after much pacing and massaging my arms and chest I fell asleep - third mistake!

June 17th in the morning
I got my husband out the door to work as usual. About an hour later when doing the dishes the pain and discomfort returned. This time I knew something wasn't right. I remember saying to myself, "This is BS!" - a second heart attack. I couldn't get my head around it being a heart attack even though it had crossed my mind. Intuition made me call my son and ask him to drive me to emergency – fourth mistake!

During all those mistakes my platelets were working to repair a tear in the lining of my Left Anterior Descending Coronary Artery. The lining and platelets were blocking the artery and preventing my heart from getting the oxygen it needed. I should have called an ambulance the evening of the 16th. That would have saved valuable time and got me immediate care. But we, typical nurturing, women, wives and mothers, are too busy taking care of others to know when we need help ourselves. It's ingrained in us! ^.^

How could I be having a heart attack, anyway? I had been a fitness buff most of my life, even a natural, amateur bodybuilding champion, still worked out at the gym, rode my bike for errands and power-walked regularly. I didn't eat red meat, smoke, or overindulge in treats or alcohol. I had no obvious risk factors. Besides, isn't a heart attack supposed to be super painful? Certainly bearing my two sons was much, much, much worse than this!!!

I was one of the lucky ones. In Surrey Memorial Hospital Emergency after a 3 hour wait, I received the tests and care to begin the repairing of the small damaged area of my heart. My husband and son came to find me relaxed with sunglasses on, under the bright hospital lights, listening to my iPod, completely cool and oblivious to the seriousness of my state. They laughed, commenting they would never forget that sight. The next morning I was sent to Vancouver General Hospital for an angiogram, which clearly showed the torn artery. Too small for surgery or stent, my condition was medically managed. I was told by my interventionist about the tear and by my cardiologist that I had had a narrow escape, that this condition was rare and usually only discovered at autopsy. Not much was known about it. Gee thanks! Ok... It must just be a fluke. Although I did work out pretty intensely the other day... Keep in mind I'm extremely competitive in the gym--or was.

With cardiac rehab and medication, in time, my life returned to a 'new normal.' No more extreme training. :( But I live! :) My heart is healthy again, no permanent damage, the artery repaired. But at cardiac rehab, like other SCAD survivors, I didn't fit in. I would do laps around the other, older, less fit participants. SCAD is blockage by tearing, not by plaque deposits, and our stories all have our complete and utter shock and surprise at having a heart attack. My arteries are pristine! Cholesterol levels are better than normal. We are more fit, younger, with healthy lifestyle choices, and many are athletic, marathon runners, cyclists and new mothers. Whenever I hear of a young person or new mother having a heart attack I wonder if it was a SCAD. And I'm filled with sadness for the many families who have lost loved ones to it without them or the doctors even knowing what happened.

I wanted to share my story to help increase awareness of this, until recently, most often fatal experience. We are in the hundreds now, having come together in online communities. Womenheart Champions have worked hard to inspire the Mayo Clinic do a research study on SCAD. On May 5th, the first annual SCAD walk was held in Naperville, Illinois.

Recent studies reveal contributing factors may include hormone spikes and irregularities, extreme effort, stress, trauma and FMD (Fibromuscular Displasia), a condition where there is abnormal growth of the lining of the arteries. Survivors should be screened for FMD in case they need to modify their lifestyle or take medication in order to prevent stroke or kidney problems.

Most importantly, call an ambulance if you experience any symptoms of heart attack or stroke. Do not wait! Your survival and recovery depend on it. Become familiar with what those symptoms may be as they are different for men and women. Heart attacks happen to healthy people, too.

Best, Teri Thom, North Vancouver, BC

One of these things is not like the other

Like most people who've had a heart attack, I have to take some pills every morning now.

I take Plavix, and I take a children's chewable 81-mg aspirin.

Note that that word "chewable" only refers to one of these:

Please also note the similar size, shape, and color between these two pills.

I submit for your consideration the fact that without my glasses, I am terribly nearsighted (with astigmatism, too).

Thus, I have a lesson to impart. Don't chew the Plavix.

Gathering together

There are words for groups of things: a murder of crows, a kindle of kittens.

What do you call a gathering of patients who've all experienced the same under-diagnosed heart condition?

I call it a MIRACLE, and it happened in Naperville, Illinois a couple of weeks ago--the first-ever SCAD Reunion and walk for SCAD Research, Inc.

Women and men who survive a spontaneous coronary artery dissection are often left feeling like freaks, because most doctors have never treated one.

To have 25 SCAD survivors all gathered together in one spot, at the same time, for a common purpose?

Another word: POWERFUL.

It's a tremendous experience, I dare call it life-changing--to be able to meet someone else who shares your diagnosis. I'm thrilled to be part of this SCAD patient collective.

Patient-Funded Research: First Annual SCAD Walk

In case the new big widget on the right side of the page wasn't a hint, just about one month from today, I'm participating in the First Annual Walk for SCAD Research, in Naperville, IL.

As my longtime readers know, Mayo Clinic has started research on spontaneous coronary artery dissections, and those of us who've had and survived a SCAD are motivated to help them keep that research going.

One brave family, the Alicos, has started a foundation, SCAD Research, Inc., in the wake of their loved one's death from a SCAD a little over a year ago. The SCAD Walk is their brainchild, and I'm happy to support it.

They've put together some info on some approximate research costs, so I've set my personal fundraising goal at $500, which is the average cost for the staff time for a detailed review and data abstraction of one SCAD patient's medical records.

Another SCAD survivor, Teri, designed this logo for us:

So that's what I'll be doing the first weekend in May. Lovely time for a walk.

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.