Sunday, January 29, 2012

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:

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):

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.