A Change of Heart

A Zebra Among Horses

2012-01-29T12:14:00.000-05:00

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

2011-12-27T11:40:00.001-05:00

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

2011-12-07T11:15:00.001-05:00

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

2011-11-14T10:29:00.001-05:00

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!)

2011-11-03T21:36:00.004-04:00

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

2011-11-03T12:41:00.000-04:00

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

2011-11-02T22:17:00.003-04:00

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.

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

2011-10-27T13:36:00.000-04:00

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.

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

2011-10-23T14:33:00.000-04:00

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?

Mayo Social Media Summit & Residency

2011-10-21T09:43:00.000-04:00

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...

SCAD comes to About.com

2011-10-17T16:09:00.000-04:00

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

http://patients.about.com/b/2011/10/17/the-scad-ladies-where-patient-empowerment-meets-rare-diseases.htm

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.

SCAD Ladies Stand Up: Stories of Patient Empowerment

2011-10-13T12:34:00.006-04:00

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.

"Disease-mongering"? LOLWUT?

2011-10-08T22:21:00.001-04:00

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.

http://www.forbes.com/sites/larryhusten/2011/10/06/disease-mongering-du-jour-heart-disease-in-young-women-red-competing-with-pink/

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.

Mayo Clinic's Social Media Summit

2011-10-05T08:42:00.002-04:00

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.

http://socialmedia.mayoclinic.org/2011/10/04/scad-ladies-highlight-social-media-summit/

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.

SCAD studies now on clinicaltrials.gov

2011-09-13T14:53:00.005-04:00

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,

http://clinicaltrials.gov/ct2/show/study/NCT01427179

and

http://clinicaltrials.gov/ct2/show/NCT01429727

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.

Medical Edge segment on SCAD

2011-08-31T11:29:00.002-04:00

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

http://youtu.be/uNnjLOF3x_Q

Spontaneous Dissection Study in Wall Street Journal

2011-08-30T11:17:00.005-04:00

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:

http://online.wsj.com/article/SB10001424053111903352704576538754057145360.html

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:
http://www.forbes.com/sites/davidshaywitz/2011/08/30/as-therapeutics-become-personal-patient-social-networks-may-become-essential/

Life Post-Dissection and Heart Attack

2011-08-21T11:43:00.009-04:00

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.

Big news! Mayo announces SCAD studies!

2011-08-17T18:01:00.003-04:00

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

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

http://newsblog.mayoclinic.org/2011/08/17/scad-spontaneous-coronary-artery-dissection-studies-at-mayo-clinic/

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!

Research Studies & Clinical Trials

2011-08-15T14:35:00.005-04:00

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?

BMI alone is not a good predictor of heart problems

2011-08-01T11:53:00.003-04:00

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

http://www.ncbi.nlm.nih.gov/pubmed/21397319

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.

Gender-Based Disparities in Heart Disease Care

2011-07-05T12:45:00.005-04:00

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:

http://www.womenheart.org/documents/upload/FINAL-TO-PRINTER-6-15-11.pdf

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.

Please take the Yale Heart Study

2011-06-28T11:47:00.005-04:00

Hey everyone, if you've had a heart attack, the Yale Heart Study would love to hear from you:

http://heartstudy.yale.edu/hacs/

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.

Touching one life at a time

2011-04-18T08:10:00.002-04:00

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.

Two Years Ago

2011-03-30T12:49:00.004-04:00

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.

My guest post on Medical IDs

2011-02-27T20:29:00.002-05:00

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

http://blog.laurenshope.com/medical-id-jewelry-blog/bid/50610/Can-a-Woman-In-Her-40-s-Have-a-Heart-Attack

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.)

But what about the men?

2011-02-15T13:47:00.010-05:00

At almost every event where I'm working in my capacity as a WomenHeart Champion, someone with XY chromosomes 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?

Still Alive and Kicking

2011-02-08T14:18:00.009-05:00

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.

SCAD--A Website of Our Own

2011-02-02T16:11:00.002-05:00

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:

http://www.spontaneouscoronaryarterydissection.com/

Check it out, and share the link.

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

2011-02-02T14:41:00.002-05:00

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:
http://www.nhlbi.nih.gov/educational/hearttruth/

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.

100,000 Heartbeats - click to donate

2010-11-10T08:41:00.002-05:00

Hey everyone, you know The Hunger Site/The Animal Rescue Site/The Breast Cancer Site/Literacy, etc, where you can click daily and a donation is made to the cause?

That's what this is. It's on the level, totally not any kind of urban legend "Bill Gates will send you $0.01 for every email" sort of thing.

All you have to do is click, and unlike the Hunger Site, you can click multiple times/day.

The money goes to the organization I volunteer for, WomenHeart: the national coalition for women with heart disease. WomenHeart spends eighty-one cents of every dollar they receive on actual programs, which if you do any work with non-profits, you know that's a great percentage.

If you're so inclined, please click, and as always with stuff like this, please feel free to steal and repost.

Plus, after you click, it does this really cool "beating heart" thing that reminds me of Edgar Allan Poe. What's not to love? ;)

I did it!

2010-10-11T10:47:00.006-04:00

I was 40 years old and training for a super-sprint triathlon when I had my SCAD (spontaneous coronary artery dissection) and heart attack in March of '09.

I don't smoke, I'm not diabetic, I don't have clogged arteries, don't have high blood pressure, and don't have sleep apnea. In August of '08 I'd started a diet and exercise plan and had dropped around 20 pounds, then in January of '09 I started training for my first triathlon.

So I don't know who was more surprised by my heart attack, the doctors or me. They fixed me up with six stents in my right coronary artery and after a week in the hospital sent me on my way. I did 12 weeks of cardiac rehab then got clearance to start training.

There have been several challenges and obstacles this year, mainly my mother-in-law's diagnosis of lung cancer, her declining health following alleged successful tumor removal surgery, and then her death in April this year.

Two of our three cats also developed health problems earlier this year, and we had to put them to sleep last week.

With all of that, it's been difficult at times to muster the mental and emotional energy to get to the gym, to get on the bike, to wake up early on Saturdays and go to the pool.

BUT I DID IT!

Yesterday I competed in and finished the Ramblin' Rose Triathlon in Chapel Hill.

Nineteen months after my heart attack, I am now a triathlete. Some people in my family doubted that this day would come, but it has. :)

My awesome husband cheered me on and took pictures, some of which you can see here:
http://www.flickr.com/photos/paulcory/sets/72157625136381120/with/5069723190/

So if you're just out of the hospital, if you've just been diagnosed, if you're still at the scared and confused stage, this is me telling you that you CAN persevere, you CAN still follow your dreams.

Yes, I have heart disease. I also now have a triathlon finisher's medal. :)

Think Pink, and Make a List!

2010-10-02T16:10:00.003-04:00

OK ladies, it's October, and we all know what that means--pink everywhere you look. :)

The breast cancer awareness folks have really done a stellar job getting the word out, and the evidence is all around us this month, awash in pink.

What I propose to do is create a list of pink products, so that we can then contact those businesses and ask them what they plan to do for American Heart Month in February, given that heart disease kills five times as many women as breast cancer.

Here's a couple I've found so far; please feel free to add to this list.

1. Coldwater Creek's Try it on for the Cure:
http://www.coldwatercreek.com/Komen/Help.aspx

2. Dansko's Pink Ribbon clog:
http://www.dansko.com/Womens/Footwear/Collections/Stapled%20Clog/Professional/Pink%20Ribbon%20Patent

3. The Hunger Site, where you click once/day to give free food, has several sister sites, including a breast cancer one where you can click to fund free mammograms for women in need:
http://www.thehungersite.com/clickToGive/home.faces?siteId=2&link=ctg_bcs_home_from_ths_home_sitenav

4. Web search company Yahoo! is going pink for October, too:
http://www.ymessengerblog.com/blog/2010/10/01/turn-pink-with-yahoo-this-month/

5. Dannon Light & Fit Yogurt's "Give Hope With Every Cup" donates $ from specially-market yogurt cups to the National Breast Cancer Foundation:
http://www.prnewswire.com/news-releases/the-national-breast-cancer-foundation-inc-and-dannon-give-hope-with-every-cup-for-breast-cancer-awareness-and-research-103949078.html

Ultimately, I'd like to see February turned as red as October is pink.

What I don't want is for this post to turn into a sort of "my disease is worse than yours" thing. Cancer is bad, and so's heart disease; it's safe to say that no one ever wants to get either one.

What I'm saying is that we can learn from the breast cancer publicity machine, so send me those links to the pink products/services you've found so far. :)

Did the AHA Heart Walk Yesterday

2010-09-27T08:43:00.005-04:00

Did the AHA's Heart Walk today with my friend Christine and with fellow heart-sister Tesca and her family--thanks again for walking with me, everyone!

We got to the site a little after 1pm and walked around, checking out all the booths. I still had my red "survivor" cap from last year so I didn't get another one but did get a 2010 Heart Walk pin.

There were around ~~15,000~~ people at the event (WRAL says 20,000), and a fair few peeled off after the one-mile walk, while we die-hards did the whole (almost) three miles.

At the last turn before crossing the finish line, the people who'd already finished kind of clustered up and were cheering on the people still walking. As I neared the finish line, an older gentleman also wearing a "survivor" hat came up and shook my hand and congratulated me.

I have to remember not to pair up these particular socks with my running shoes again; I'm getting a big blister on the outside of my right foot between my ankle and heel.

One thing that stood out was the lack of water stations along the course. I did the one-mile walk last year and there was no water on the course, but I thought surely they'd have it for the three-mile walk. They had water beforehand, and apples. Afterward, there were Subway sandwiches, apples, and Diet Pepsi, but Chris and I both said, "Eeew no," to the Diet Pepsi. Note to self: if walking next year, grab all the water bottles I can carry before the walk starts.

One cool thing was that they had Duke's mobile cath lab there, so I went in and looked around and listened while they talked about what happens during a heart cath. It was nice to see all the equipment and such from an upright position, as opposed to laying down and drugged. It was a little freaky, but my feeling is that exposure will help.

Last year, in preparation for the WomenHeart Symposium at the Mayo Clinic, they'd sent us a textbook and one of the chapters we had to read was on heart procedures. I thought I was doing fine and I actually had sat down to eat supper while reading about heart caths.

I got a few paragraphs in and looked at the detailed illustrations, and had a panic attack. I started getting lightheaded and short of breath and my vision was starting to tunnel. I had to get my husband to come help me upstairs so I could lay down for a little while and wait for the feelings to subside.

While at Mayo, we had a chance to tour a cath lab, and I did it. I was worried some about having another panic attack, but again, seeing everything while standing up seemed to make a difference, and it was good to see actual examples of stents. They're really small, about the size of the spring from a ballpoint pen.

As for this year's Heart Walk, the weirdest giveaway goes to UNC Cardiovascular--most booths had something at least vaguely heart-related, you know, healthy recipe cards, water bottles, etc. UNC has now ensured that whenever Paul and I need it, we have MORE COWBELL. That's right, they were giving away cowbells. :)

Thanks again to everyone who came out and walked with me, and who sent donations.

Dragon*Con, Blood Thinners, and You: Or, Where Did All of These Bruises Come From?

2010-09-10T16:16:00.004-04:00

Most of you have heard me talk some about how I really don't fit the media stereotype of the heart attack survivor—the most obvious thing being that I'm not a 60-70 year old, type A personality male. I'm a 42-year old woman (40 when the heart attack happened) who doesn't have high blood pressure, doesn't smoke, isn't diabetic and doesn't have clogged arteries. I'm overweight but had been dieting and exercising for several months and taken off around 20 pounds when I woke up that morning with crushing chest pain.

I'm also unusual in the heart disease community because I'm, well, let's face it: I'm a geek. I'm a nerd. I was the kid in high school who was in the AP/advanced classes. I took one of the first computer processing classes offered at my high school (on TRS-80s, no less)—we spent a semester on BASIC, then spent a quarter split into small groups to write a program in COBOL. When my world history teacher did review sessions at the end of the semester and gave extra credit for correctly-answered questions, he wouldn't let me play—said it would skew his grading curve too badly. I wear glasses.

I have volunteered at and run science fiction conventions in my home town. I play role-playing games (Champions/Hero System, if you must know). I love Star Trek, Babylon 5, Futurama, Firefly/Serenity, Farscape, the new Battlestar Galactica, and more. My favorite authors write series you've probably never heard of: Honor Harrington, Skolian saga, Saint Germain chronicles, Deryni series, Liaden universe, Technic civilization. At my day-job, I work for a science fiction publisher. I read comics and love comic-book characters, with Batman being a particular favorite.

My husband and I spent Labor Day weekend congregating with our tribe, our people, our fellow geeks and nerds. Maybe you've heard of San Diego Comic Con? The event we attended this past weekend is similar, but is run by a hardworking corps of volunteers and takes place in Atlanta every year: Dragon*Con.

Some people jokingly call it "Nerdi Gras," and that's as good a quick description as any. You'll find people of all shapes and sizes in costumes of all types, from cartoon characters to the latest sf TV shows—one family came as the characters from Scooby Doo, someone else dressed up as the Witch King from Lord of the Rings, there were several Batmans and Supermans, and the group that won the Sunday night masquerade did steampunk versions of the X-Men. Lots of people, including me, have no talent at costuming; we just wear comfortable clothes and admire the skill and chutzpah of the people who do take the time to dress up.

There are 37 tracks of programming, so there's always something to do—usually two or three things are happening at once and you want to go to all of them, so you have to make hard choices: Jim Butcher autograph session, or discussion on the lasting impact of H.P. Lovecraft, or Q&A with the cast of Firefly?

Somewhere around 50,000 people streamed into downtown Atlanta to take part in the con (short for "convention," not "con game"), and I do mean "take part," because the people become part of the experience—via costumes, via interacting with panelists, meeting fellow fans while waiting in line, hosting or attending parties, taking pictures. It's an interactive experience. Wear comfortable shoes.

If you're at all crowd-phobic, you may need to take steps to make sure that you can fully enjoy your weekend at Dragon*Con. The public areas of the hotels hosting the Dealers' rooms—where you'll find everything for sale from leather corsets to T-shirts with snarky sayings to dice in all colors, shapes and sizes—and large events like concerts and some of the really popular panels turn into wall-to-wall people, especially on Saturday.

As a short woman who apparently projects an invisibility shield, people were bumping into me, stepping on me, and cutting me off all weekend. Even when my 6' husband was holding my hand, we'd still get separated. It seriously made me wish I had a taser.

That said, once I'd fought my way through the crowds, ultimately I enjoyed whatever event or panel I went to.

Then the bruises started showing up.

This is the legacy of having a heart attack: taking Plavix and a full-strength aspirin every day. Sometimes a bruise shows up and I know exactly what happened. "Oh, I banged my shin on the coffee table last night in the dark." Other times, a bruise'll appear and I'll have no idea what I did; maybe someone looked at me cross-eyed.

Most of the ones incurred from the full-contact sport of getting from place to place at Dragon*Con aren't visible; they're on my legs and feet, with one on the last two knuckles of my right hand that falls into the "I have no IDEA where that came from" category.

If you're on blood thinners, arnica gel is your friend. It really does help the bruises fade faster. It won't disguise them if you're self-conscious about them where they show (next post: why Capri pants and 3/4-sleeve shirts are a Plavix-girl's friend), but they will disappear quicker than they would otherwise. I spent time every morning and evening at D*C putting arnica on my battle-scars.

As a heart disease patient, I also modify the standard travel-size emergency kit to include a list of current meds, emergency contact info, nitro pills and baby aspirin, and of course my trusty tube of arnica gel. You can get it at most organic food co-ops and also places like Whole Foods.

This is a good time for me to remind people to get and wear a medical ID of some sort—bracelet, necklace, there are a TON of options in every style, color, and price range, and there's no excuse to not wear one. Many times at Dragon*Con, my husband and I were attending different events in different hotels. Depending on your carrier, cell phone reception in the various host hotels ranged from OK to decent to horrible. If something had happened to me, it would have taken some doing to track him down, but thankfully I was always wearing my medical ID bracelet.

One thing that happened over the weekend that meant a lot to me was getting to meet Kevin Sorbo. If you don't know his work, he's an actor who played Hercules in the show Hercules: The Legendary Journeys, and Xena: Warrior Princess, as well as Capt. Dylan Hunt in Gene Roddenberry's Andromeda.

Right after my heart attack, I was, to put it mildly, freaked out and scared. The heart attack was in late March and my birthday is in early May; for my birthday that year I received a lot of Amazon.com gift certificates. I pooled them together and bought the box set of Hercules.

I was only out of work for a couple of weeks, then it was back in the saddle, and I started up cardiac rehab a few weeks after getting out of the hospital.

It was wonderful to come home in the evenings and be able to put on an episode of Hercules and get transported to another place and time for awhile and not have to think about what had happened to me. Not have to look at the scar on my wrist where they stuck an arterial line my third night in the hospital. Not sitting at the computer reading scary statistics about spontaneous dissections. Having a little bit of time where I didn't have to remember that my life had changed forever and I could never go back to the way things used to be.

An author friend who'd met Kevin at a previous convention offered to introduce me, and since I get so tongue-tied around people, I accepted. While we waited for him to show up at his table, Tim and his wife Anna took me around and introduced me to some of the other Dragon*Con guests at the Walk of Fame: Peter Mayhew, Raelee Hill, Claudia Christian, and then... Kevin Sorbo.

After they introduced me, I bought a photo and got it autographed—then got incoherent and weepy. I think I managed to get out "Thanks... box set Hercules... helped me through a really scary time of my life... heart attack... freaked out... thanks for the entertainment and distraction..." He was really sweet and gave me a hug. I'm tearing up a little now just writing about it. I just wanted to make sure he knew that I appreciated him and the show and what it meant to me.

The con could have ended right after that, and I would have counted it as a win. But there was still another day's worth of entertainment, including having dinner with a friend and watching the Masquerade (a costume contest) from the comfort of our hotel room. One thing that Dragon*Con does is to have some of the larger, more popular events broadcast to the TVs in the host hotels, over a private channel called D*CTV (Dragon*Con TV). So sometimes you don't have to fight through the crowds to see your favorite events.

All in all, it was a great weekend full of memories that I'll carry with me for a lifetime.

Having heart disease doesn't mean you stop enjoying life; it means you take a few precautions and get out there and keep living.

Networking--More Ways to Find Local WomenHeart Groups

2010-07-31T22:10:00.003-04:00

Now there's a WomenHeart Meetup for the Triangle area:
http://www.meetup.com/Triangle-WomenHeart/

And we have a FaceBook page, too:
http://www.facebook.com/group.php?gid=136417453062785

This afternoon was what I hope will be the first of many annual Triangle WomenHeart cookouts, at Lake Crabtree County Park near the RDU airport. We had about 15 women there, which is great turnout for one of our events, and with the overcast skies and drizzle, temperatures stayed in the high 70s; it was quite comfortable most of the time.

Everyone really seemed to enjoy sharing her own story of heart disease, even the ones who are part of the group not because they have it, but because they have a strong family history, and/or they have a lot of risk factors (diabetes, weight, high blood pressure, etc.).

The age range was good, too; we had a couple of older ladies in their 70s, and some young ones in their 30s, and everything in between.

Good food, and good companionship. I'm hoping to do it again next year, and the year after that, and the year after that.

AHA's Go Red Luncheon Today

2010-05-07T15:15:00.004-04:00

Today was the AHA's Go Red luncheon.

Lunch was at the Crabtree Marriott in Raleigh and was very nice, except that my chicken was under-done so I left still feeling a bit hungry. On the up side, I finally got to meet in person another local heart-sister whom I've been emailing and Facebooking with for several months, and that was great. We had a wonderful time just standing around and talking, though we did take the opportunity to attend one of the break-out sessions on exercise and yoga. I wonder if I can get work to buy me a stabili-ball chair...

Triangle-area Heart Events

2010-02-07T18:02:00.003-05:00

Saturday, Feb. 20th is Your Heart, Your Health: A Red Dress Celebration, presented by the Duke Heart Center.

Friday, May 7th is the Triangle Go Red for Women Lunch at the Crabtree Marriott.

Other events will be posted as I find them. Sometimes it's difficult getting information, but I promise to share what I learn.

Getting some press for women's heart disease

2010-02-02T10:46:00.000-05:00

I'm in the February issue of Carolina Woman magazine:

http://www.carolinawoman.com/body02-10.php

In mid-January I sent out a press release to the various local media outlets, asking them to please do something for National Wear Red Day and American Heart Month, and included a bit of my own story.

This time I got two nibbles. Fingers crossed, there's going to be a story soon in the local daily paper with another young heart attack survivor and and me, and then a couple weeks ago Carolina Woman magazine called and said they wanted to run my press release as kind of a "letter to the editor." So of course I said great, and now there it is. :)

Of course if I'd known they were going to run it as-is with no chance to alter it, I would've put more in it about the three local WomenHeart support groups, but at least the website is in there.

In other heart-healthy news, I've just registered for the women-only Ramblin' Rose Triathlon.

One Month From Today: National Wear Red Day Feb. 5th!

2010-01-05T13:21:00.003-05:00

Mark your calendars and find your snazziest red outfit!

From the National Heart, Lung and Blood Institute site:

Friday, February 5, 2010, is National Wear Red Day here in the US--a day when Americans nationwide will take women's health to heart by wearing red to show their support for women's heart disease awareness. The Red Dress, the national symbol for women and heart disease awareness, was created by The Heart Truth in 2002 to deliver an urgent wake-up call to American women.

Join The Heart Truth on National Wear Red Day to help spread the critical message that "Heart Disease Doesn't Care What You Wear--It's the #1 Killer of Women."

Everyone can participate in the national movement by wearing their favorite red dress, shirt, tie, or Red Dress Pin on Friday, February 5, 2010.

http://www.nhlbi.nih.gov/educational/hearttruth/index.htm

If you don't have something red to wear, you've got a month to stimulate the economy by picking up something red to wear, or getting a red dress pin. :)

NIH red dress pin:
http://emall.nhlbihin.net/product2.asp?sku=56-075N

AHA's red dress pin:
http://tinyurl.com/y8td3gk

Canada's version of The Heart Truth and the Canadian red dress pin:
http://www.thehearttruth.ca/what_is_the_red_dres

As far as I know, the UK doesn't have anything like the Heart Truth/Red Dress campaign, but if someone knows of one, please let me know and I'll add a link. Thanks.

Actually, the entire month of February is American Heart Month.

The CDC has animated e-cards that you can send to friends, family and co-workers to remind them to please wear red on the first Friday in February:
http://www2c.cdc.gov/ecards/message/message.asp?cardid=260&category=203

Anatomy of a dissection

2009-12-16T12:17:00.005-05:00

Sometimes it can be difficult to explain to people what a spontaneous coronary artery dissection really is. This is an animation of a dissection. See how the inner layer of the artery separates, and creates a false channel (lumen) for the blood, and the blood pools in there and eventually blocks the artery? That's what happened to me. Heart attacks are caused when blood flow to the heart is blocked.

Mine happened in the Right Coronary Artery, which you can see on this image:

The six stents I have are pushing the torn inner layer back up against the outside wall of the artery, where it should be. I have six because they had to repair almost the entire thing. I do remember hearing the doctors discussing placing a seventh stent, but they were worried that it would poke out into the aorta. Looking at the image above, I can see more clearly what they meant by that.

Watch Dr. Oz on Dec. 17th, and have a heart-healthy holiday!

2009-12-08T11:44:00.004-05:00

When you get involved with WomenHeart as a WomenHeart Champion--meaning you've gone through the training program at the Mayo Clinic--you get paired up with a more experienced volunteer, usually someone local to you if possible, and she's called your Big Sister (on the WomenHeart message board, we refer to each other, Champion or not, as "heart-sisters," since we're all united by our cardiac problems).

My "Big Sister," Marietta, is going to be on The Dr. Oz Show on Thursday, Dec. 17th. His program that day is about people who've had heart attacks during the holidays, the so-called Merry Christmas Coronary and/or Happy New Year Heart Attack, which you can read about here:

http://sitemason.vanderbilt.edu/news/campusnews/2009/12/07/doctors-warn-against-holiday-heart-attack-spike.101760

To reiterate the tips listed at the end of the article:

Don't stuff yourself.

Watch your sodium and alcohol intakes.

Do what you need to do to reduce your stress.

Be vigilant about taking your medicines.

And--if you experience any symptoms, get medical help immediately. You're not doing anyone any favors by ignoring your chest pain; delay now could be costly down the road.

A Change of Heart issue 2 is on!

2009-12-08T11:33:00.002-05:00

After the success of my first heart-related fanzine, A Change of Heart, I've decided to put out another issue.

This one will be timed to come out during February, which here in the United States is American Heart Month. If that issue does well too, then I may have an annual fanzine on my hands. :)

So if you wanted to submit something for the first one but didn't get around to it, or if you want to send me a letter of comment (LOC, in fan-speak) on the first issue (link goes to pdf version available from efanzines.com), here's your chance.

I'm looking for essays, poems, artwork, and short fiction--from fans with any type of heart disease/heart failure, on the topic of being a fan with heart problems. See first issue for examples.

As before, emailed submissions are greatly preferred--to laurahcory at yahoo, but if you know someone who doesn't do email, ping me and I'll get you my snail-mail address.

Deadline for submissions is Jan. 30th, 2010.

Dipping toes into golo

2009-10-26T15:50:00.003-04:00

One of the local tv stations has a website with an active GoLo (GoLocal) community; I've joined and started posting a few blog entries over there.

http://www.wral.com/golo/profile/5880574/

I'm pretty much just focusing on heart-health related things with it.

Quick Symposium Notes

2009-10-15T11:25:00.004-04:00

Tired, but here are some quick Symposium thoughts:

My brain is full. Crammed full of knowledge--medical, scientific, networking skills, so much to remember.

My heart is full. Full of love and appreciation of my new-found heart sisters from around the country.

Here are a few quick photos on my Flickr page from various events throughout the five days at Mayo:

http://www.flickr.com/photos/tags/womenheartsymposium2009/

From our tour of the Mayo Clinic: the cardiac cath lab--good to see while standing up instead of lying down, let me tell you. Two pictures from the day we spent out at Assisi Heights: the statue of St. Francis is from the inside, and the courtyard shows the snow that greeted us that morning.

Jyl is a belly dancer and a WomenHeart Champion. Jan, beside her, is local to me and a WomenHeart Champion. I am a WomenHeart Champion. Stephanie, in the picture with me, is a WomenHeart Champion. The pictures of us are from our dressy dinner/reception on Tuesday night.

I will upload more pictures soon but I'm also hopeful that other Symposium attendees will share some of theirs; a lot of mine ended up being blurry, alas.

Clinical Trials

2009-09-30T12:15:00.003-04:00

One statistic that always leaps out at me is that women only make up around 27% of the participants in heart-related research. I honestly feel like this is one reason why women die more frequently from their heart attacks than men do; there's simply not as much known about heart disease in women.

We can start to change that by participating in clinical trials. Here's a good source of clinical trials:

http://www.clinicaltrials.gov/

In fact, searching that site, I just now found a study that's currently enrolling young women who've had heart attacks. As soon as this post is up, I'm going to email them and sign up, and I would encourage other women to seek out research opportunities as well.

Heart Walk Success

2009-09-28T11:21:00.004-04:00

The Heart Walk went well yesterday. Thanks to generous friends and family, I raised over $250 for the American Heart Association! Thank you all so much for all your help and support.

Here's a link to my pictures on Flickr:

http://www.flickr.com/photos/47904085@N00/tags/2009heartwalk/

We had a warm, sunny day for the walk; I understand that last year was unseasonably cool. There were over 200 people on the team from UNC, and it was great to catch up with the rehab staff and some of the people who were going through rehab at the same time as me.

There were a lot of dogs at the walk, everything from huge friendly golden retrievers down to mini-poodles that people were carrying.

I'm looking forward to walking again next year.

Medical IDs, and SCAD discussion

2009-09-25T09:28:00.004-04:00

At the local WomenHeart meeting last night, my group leader was admiring my new medical ID bracelet. I already had one, but this one is my new dressy one, with lavender and purple beads.

My feeling on medical ID jewelry is this: just because it's functional, doesn't mean it has to be fugly. ;)

Here are the two places where I got my bracelets, Fiddledee Ids, and Lauren's Hope.

I already have a plain black leather strap bracelet for everyday wear--the Kingston, from Fiddledee Ids. For swimming, I have a waterproof one of these, in purple.

My new one looks similar to this style from Lauren's Hope. I did the build your own option and chose two different shades of purple for the beads. I also have this purple adjustable waterproof bracelet.

So yes, I have four. Two for daily wear, and two for exercise. Both of the exercise ones are waterproof and both of those have been tested in swimming pools and the ocean.

I'm happy with the quality, engraving, and shipping speed from both Fiddledee IDs and Lauren's Hope; you can't go wrong with either place. They both have plenty of options for men, women, and children, and lots of choices to make your medical ID jewelry pretty as well as functional.

On another topic, I'm trying to round up as many SCAD survivors as I can and get them posting in one place, so we can find each other easily. The discussion I started over on the WomenHeart board is here: All the SCAD Ladies Put Your Hands Up.

Triangle Heart Walk, Sept. 27th

2009-08-21T22:19:00.004-04:00

OK, last place I'm posting this. I'm only posting it once, but I'm posting it to 2 different FB accounts and 3 different blogs, so my apologies to those of you who see it multiple times. After today, I'm not going to mention it again, because I don't like asking for $.

This year, I'm participating in the Triangle Heart Walk, which is a fundraiser for the American Heart Association. If you're wondering why I'm doing this, see here (though most of you know the story).

I'm uncomfortable asking for money, so this is the only time I'm going to post the link:

My page for HeartWalk donations is here.

Annoyingly, the online form only seems to let people give in $25 increments; if you'd like to give a different amount, you'll need to print out the donation pdf and mail it--sorry about that. :/

Meanwhile, here are some heart disease stats from WomenHeart:

* Heart disease is the leading cause of death of American women, killing more than a quarter of them.

* Over 213,000 women die each year from heart attacks--five times as many women as breast cancer.

* More women than men die of heart disease each year.

* Women are less likely than men to receive appropriate treatment after a heart attack.

* Women account for only 27% of participants in all heart-related research studies.

* 23% of women and 18% of men will die within one year of a first recognized heart attack; 22-32% of female and 16-24% of male heart attack survivors will have another heart attack within five years.

* 12-25% of female and 7-22% of male heart attack survivors will be diagnosed with heart failure within five years.

* 34.9% of deaths in American women over the age of 20, or more than 450,000, are caused by cardiovascular disease each year.

* Over 166,000 women die each year of congestive heart failure, accounting for 56.8% of all heart failure deaths.

A Change of Heart fanzine now available

2009-08-13T11:59:00.001-04:00

This is to announce that my one-shot fanzine, A CHANGE OF HEART, as announced here, is now done and available.

At the moment I can email you a .doc or .rtf, or send you a printed version if you send me your snail-mail address. There will be a pdf version later this evening, and once I have the pdf, I'll send it over to efanzines.com for inclusion there.

Thanks so much to everyone who sent something, and to everyone who helped get the word out, and to my friend Warren for carrying the first batch, still hot off the presses and containing a typo or two, to WorldCon for me.

I got into the WomenHeart Symposium!

2009-08-04T13:06:00.001-04:00

Great news--I've been accepted into the WomenHeart Science & Leadership Symposium!

http://www.womenheart.org/programsEvents/programs/national.cfm

It's four days at the Mayo Clinic in Rochester, MN and is a fantastic opportunity not only to train to become a champion spokeswoman for women with heart disease but to connect with other women who've been through similar things. I'm really excited. :) I sent my application off, then tried to just put it out of my mind, because at that point the decision was out of my hands.

I was a little nervous opening the big envelope from WomenHeart last night; I cracked it open and peeked in cautiously, saw the word "congratulations," grinned, and only then opened it the rest of the way.

I'm done with rehab!!

2009-07-31T12:39:00.003-04:00

Or as my co-worker Hank said when I got to work this morning and showed off my stylin' new red shirt, "I survived cardiac rehab and all I got was this lousy T-shirt." [Let the Star Trek red shirt jokes commence ;)]

Actually, it's a pretty cool shirt, and rehab has been, for the most part, a really good experience for me. There were a couple of bumps in the road, but when I look back at where I was 12 weeks ago, more psychologically than physically even, it's been a tremendous benefit, and it's a tragedy--a health emergency I'd almost say--that a lot of women never have cardiac rehab mentioned to them.

Last thing I read said that just over half, 56 percent, of patients who need cardiac rehab actually get referred, and women get referred at a much lower rate than men.

That's been borne out by my experience--for most of my time in rehab I've been the only woman in my class. For part of the time there was an older woman, then she left and I was alone again. Then a couple of weeks ago another woman, maybe in her mid-50s, joined. But we're still far outnumbered by the men. Heart disease is the #1 killer of women in the US, but cardiac rehab is still very much a man's game.

When I started rehab, my total cholesterol was 225: HDL of 54 and LDL of 149, triglycerides at 109. Now my total cholesterol is 172: HDL 57, LDL 94, and triglycerides at 105. I've been on Zocor (well, the generic) since my heart attack, so I can't claim all the credit.

Blood pressure has stayed about the same, in the 110/70 range, though when they checked it right after I'd come off the beta blocker, it was 102/64.

When I first started, I was so scared and anxious that I stopped my initial treadmill stress test after only 5 minutes, so the upper end of my target heart rate range was 87. Plus also beta blocker. Now, with no beta blocker, my THRR is 126 for the upper end. :)

I did 8 biceps curls in 30 seconds at the start of rehab; now I can do 15.

But more than anything else, I know that I can go swim for a half hour and not collapse. I can run on the treadmill with no fear. I can go for a bike ride just a like a normal person. There are a lot of things I can do like a normal person now, and that's the point of getting up at five-freakin-thirty in the morning three days a week for twelve weeks.

Don't think because I won't be at rehab anymore that I'm going to turn into a slacker, though. I've signed up for the Triangle Heart Walk on Sept. 27th, and I'm looking over the super-sprint triathlon options.

Can I get a hallelujah? :)

Heart update

2009-07-22T14:15:00.003-04:00

I had several cardio-related appointments yesterday and today. Yesterday morning was a blood draw, then in the afternoon was my cardiology follow-up appointment. Let me just say again that it still seems so surreal, almost four months out, that I freakin' have a cardiologist.

Since I'd told the nurses at cardiac rehab that I was nervous about having my blood drawn, they sent me over to the Heart Center for the phlebotomist there, Joel, to do it. He's supposed to be very good, although when he took blood from me back in April it hurt a lot--though he said it was because my veins were still scarred from all the repeated blood draws from the hospitalizations.

So I wasn't too confident, but my veins have recovered, and Joel did fine, and there was minimal pain. This blood work is to check a couple of things: cholesterol levels, and liver enzymes. The liver enzyme check is because the Zocor can rarely cause liver problems.

After that, I went to Brig's for breakfast because I hadn't had anything to eat since around 8pm the night before, and I hadn't been there since right after I got out of the hospital... So hello omelet, and pancake (and leftovers for today). Then home to chill out for a bit before my cardio follow-up at 1pm.

The cardio visit was pretty routine: they did an EKG, as usual. They took my blood pressure, which was high for me, at 113/78 (I sometimes get "white coat syndrome"). OTOH, my resting heart rate was around 42, thanks to the beta blocker.

My doctor cleared me for pretty much everything: lifting weights, flying, sitting in the hot tub--the place where I swim has a hot tub, you see. My EF is well over the magic number of 55 percent, he said.

He asked how well I was sleeping. I said that the only anxiety I had, really, was about the chance of it happening again. He was pretty straight with me; he said that it was such a rare, 1 in 1000 thing that happened, that he could see where I would be worried. But given that I don't have any other contributing factors--I'm healthy, I don't have any connective tissue disorders--he said I'm more in danger of having a car accident on my way to and from work every day than of having another spontaneous dissection.

They don't know why it happened. They may never know why it happened. And mostly I'm OK with that; sometimes I want answers, but I'm growing more accepting of the fact that I'll probably never have any.

The best news is that he took me off the beta blocker, whee!! My heart rate is already pretty low (see above), as is my normal blood pressure. I was a little worried because when I first asked if he had a timetable for reducing my dose, he said that some people stay on it for life. But after he conferred with another cardiologist and they both looked at my EKG and my heart rate and such, they decided that I could come off it. I go back for another visit in four months.

This morning I had my end-of-rehab treadmill stress test. This one is a compare-and-contrast to the one I did when I first started rehab, to mark my progress. And I passed, if you will, with flying colors! I just about doubled the time that I was on the treadmill, from five and a half minutes to ten minutes, and I got my heart rate up to 130--which is almost a normal range for a woman of my age and weight. The rehab nurses were thrilled, and the doctor who was monitoring my stress test said I deserved a gold star.

My last day of rehab is July 31st. I'm pleased that things are going well.

Rehab and blood draws and follow-ups, oh my

2009-07-20T13:39:00.003-04:00

I'm coming up on the end of my time in cardiac rehab. It will be good to switch from Meadowmont back to my old gym, Duke Health & Fitness. Meadowmont is a good facility, but I miss my water aerobics classes, and being able to lift weights--I'm not really a fan of the giant rubber band school of resistance strength training.

Tomorrow I have medical stuff all day. Blood draws in the morning for cholesterol and liver checks, and cardiologist follow-up appt. in the afternoon. So no food for me after 8pm tonight.

I hate hate hate having my blood drawn. It got to where near the end of my hospitalization, I would cry when I saw the phlebotomists coming in--because after nearly a week of three blood draws/day, they'd just about run out of places to stick me and had resorted to poking the backs of my hands. The only reason it wasn't worse was because for a couple of days, I had an arterial line in and they were able to take blood straight from that for awhile, until the line got kinked and they took it out (I was terribly sad to see it go).

I know I sound like a wimp--they stuck my femoral artery twice and threaded a catheter up to my heart, for cryin' out loud--but for that, they had me on a morphine/valium drip, so I didn't give a crap.

Now is a good time to practice my deep breathing and relaxation. Now is NOT a good time for the loud, boisterous child to be in the office, when I'm already anxious...

Must remember to write out list of questions tonight for the doctor. #1, how long will I have to be on the beta blocker.

Worse than I thought, ack

2009-06-18T13:35:00.001-04:00

Apropos of this, Paul says I missed a few; the actual total is closer to $116k. This is how people who are un- and under-insured go bankrupt and end up homeless. We need healthcare reform NOW.

Need a fresh pair of eyes

2009-06-18T09:01:00.001-04:00

Hey everyone, especially my editor and proofreader friends--do any of you have a few minutes to look over my WomenHeart Symposium application for me, to catch any typos or other embarrassing mistakes?

If so, please ping me at whatever email address you have for me, and I'll send you my application. It's due tomorrow, but I'd like to get it turned in this afternoon if possible to beat the last-minute rush... Thanks very much. :)

Are they trying to create a repeat customer??

2009-06-17T19:48:00.001-04:00

There was a fat-ish envelope from my insurance waiting for me when I got home from work this evening. I opened it up and just about fell over. Unless more bills come in, we're looking at a total cost of right around $100,000 for everything.

If I didn't have good health insurance, that would bankrupt us, really and truly. I read a statistic online the other day that said that something like 65% of new bankruptcies in the US are related to medical costs. I believe it.

And even though the vast majority of it IS being taken care of by insurance, we're still going to have to pay a decent chunk ourselves, and I have a lump in my throat and my chest is a little tight.

Not to sound whiny, but we're going to end up selling some stuff, probably via yard sale. I'll most likely start making jewelry and soaps again and get serious about selling them. Costs will be cut. Whatever 10th wedding anniversary travel plans we've had have gone out the window.

But we'll get through this. Things could have been much worse.

Progress: I can bike and swim again!

2009-06-17T16:39:00.001-04:00

My cardiologist has given me permission to ride my bike and start swimming again, yay! I don't know if I can fully articulate how happy this makes me--please just take it as given. :)

Paul says thanks (and so do I)

2009-06-17T13:39:00.001-04:00

Paul's posted a big health update and thanks, so I figured I'd link to it:

http://paulcory.livejournal.com/155724.html

Pretty much seconding what he said. We've really appreciated everyone's support these past few months; it's meant a tremendous amount to us both.

Call for Submissions: A heart-related fanzine

2009-06-08T14:31:00.000-04:00

Since my heart attack and angioplasty/stents, I've been trying to think of a fannish way to get the word out about heart disease. I was pondering this more over the weekend while I volunteered at a health expo on Saturday, at the WomenHeart booth, handing out brochures and information.

Well, on my way to work this morning, a lightbulb went off. Fans don't want to read brochures, we want to read *fanzines*. So I figured I'd try to solicit as many stories from as many fannish heart patients as I could, put them all together in a one-shot, and distribute it far and wide. Maybe even make a nifty, limited-edition button to give to all the contributors.

The last page would be an "In Memoriam" page, or as one my favorite TV shows, Babylon 5 says, "To absent friends, in memory still bright..." with a list of fans who've passed on from heart disease/heart attacks/etc.

Toward that end, this is a call for contributions for my one-shot, tentatively called A CHANGE OF HEART. Stories, poems, letters of comment, and artwork from fans who've had heart-related illness and/or surgery are welcome. If you yourself aren't the heart patient, but an immediate family member is/was, I'd also be glad to hear from you. Emailed submissions are strongly preferred; please send to laurahcory [at] yah00 -- but if you know someone who doesn't do email, ping me and I'll send you my snail-addy to pass along. And I need names for the "In Memoriam" page.

Deadline for submissions is July 24th. That's more than six weeks out and gives me time to put the thing together and send some copies up to Worldcon.

Permission granted to forward this to other fannish places.

Talking to Rehab

2009-06-05T15:24:00.001-04:00

OK, so as I've mentioned here and here, there've been a couple of times where I've felt like a square peg being pounded into a round hole at cardiac rehab. Their usual patient is older, male, and has had a bypass. I'm young(ish), female, and had angioplasty and stents. No prior risk factors. I know how to eat right, how to exercise, all that jazz, and I'm pre-menopausal.

After cardiac survivors' support group on Wednesday, I spoke with the head of the rehab program. Longtime friends and readers know how much I loathe direct confrontation, but this is my health on the line here. So I told the lady that there had been a situation earlier in the week where I felt like I hadn't been heard, like I wasn't being listened to, that it seemed like the rehab group leaders were treating me like "Generic Cardiac Patient X," instead of seeing me for what I am: a woman under 50 years old who had a heart attack caused by a freak occurrence (arterial dissection), not coronary artery disease, or high blood pressure.

She actually seemed to hear what I had to say, and genuinely seemed appreciative of the feedback. She said, "What can we do?" I told her that I needed some reassurance that the nurses were actually seeing ME when they looked at me, and that they recognize that I'm not a 70-year-old male with hypertension and a triple bypass. I needed to know that they realize that I'm a woman who still has menstrual cycles, and that they won't refer me to the nutritionist the next time I gain 3 pounds of water weight in the days right before my period. She seemed to understand, and she asked if there were any staff members in particular that I felt more comfortable with--I named two.

It felt good to speak my mind in a constructive way. It's my hope that by speaking up, I'm making things easier for other young women who may come through the program.

Speaking my mind

2009-06-03T06:31:00.002-04:00

I'm off to cardiac rehab, early, to talk to them about what happened on Monday.

Wish me luck.

IT'S JUST MY PERIOD! IT'S JUST MY PERIOD! IT'S JUST MY PERIOD!

2009-06-01T13:07:00.002-04:00

OK, so last week there was this, where the cardiac rehab nurses were threatening to refer me to the dietician for my period-related weight gain. That every woman gets. That had subsequently disappeared by the time they expressed their "concern."

Today, near the end of exercise class, while we were moving from the gym back to the room where we do our warm-up/cool-down, the dietician showed up--and made a beeline for me. Oh hell no.

Sigh. She reiterated the "concern about your recent weight gain." I said, "OH MY GOD," and did the facepalm thing, and said through my hands in an obviously irritated voice, "Do you people never deal with any menstruating women here?! IT'S JUST MY PERIOD! IT'S JUST MY PERIOD! IT'S JUST MY PERIOD!"

The instructor at the front of the class glanced in our direction and tried to hide a smile.

The dietician tried to "shush" me. I told her that the weight was already gone, even (it is). She looked very nonplussed, said they did have some women of child-bearing age in the program, one of whom gained and lost six pounds every month. She mumbled something about being caught off-guard and left. It wasn't really fair of me to hit her with both barrels, but seriously now.

We have at least three things going on here.

1. The nurses were completely ignoring me the other week when I said the weight gain was just related to my monthly menstrual cycle. Being ignored makes me cranky. Yes, I know I've had a heart attack; that doesn't mean I don't know anything about my body.

2. If they weren't willing to listen to the patient, me, they could have at least bothered to check the facts on the ground before calling in the nutritionist. The fact that the weight gain has been reversed is documented there on the chart that we fill out every exercise session.

3. They lied when they said they were going to "monitor the situation" before calling in the dietician. They blindsided me by calling her in when they led me to believe they were going to at least look at my stats again first.

I feel disrespected and unheard and like I can't trust them now, and that's not good.

I had a meltdown today

2009-05-29T15:14:00.001-04:00

I had a meltdown in cardiac rehab this morning. I feel like a big ol' crybaby. And part of me wants to just BE that two-year-old, and have a typical terrible two-year-old's temper tantrum. I want my old life back!

What happened was that I started having some pain in my left arm. When I had my heart attack at the end of March, I also had left arm pain, so as I'm sure you can all imagine, I was freaking out a little.

The nurses did a paddle check--minds out of the gutters, you pervs; it's not as fun as it sounds. ;) They hooked me up to the defibrillator and printed out a little EKG strip and said everything looked normal, but they could tell I was stressed so they had me sit down and drink some water.

At which point I started crying, because I'm tired of being the person who freaks out about a tiny bit of arm pain. I'm tired of worrying about every small twinge and ache. I DON'T WANNA ANYMORE. I want my old life back.

They also checked my blood pressure, which was a little elevated (for me--118/80), so they gave me a nitro pill under my tongue and called the in-house cardiologist over. She reassured me that the arm pain by itself, with no other symptoms like shortness of breath, was highly unlikely to be indicative of a problem. And also that the location of the pain meant that it most likely wasn't my heart.

And lastly, since the nitro wasn't helping, they said that was the most indicative of all that I wasn't having any heart trouble.

It'll be two months tomorrow. The heart attack and SCAD are a big black line that divides my life into "before" and "after," and I'm tired of living in the "after." I want to go back to the "before."

Obviously I know this isn't possible, and I think that's why I was crying this morning. It's all the anger and grief finally coming out. I haven't really had a complete and total meltdown about what happened to me yet, and I think I'm finally starting to. :/

It didn't particularly help that there's a lot of stress at work today--several important things that we sent to a major conference that's going on right now in New York City have been lost, one of our authors didn't get his plane ticket reserved, and another one's reservation got messed up.

None of which were my screw-ups (thank GAWD), but I was running around trying to fix at least some of them this afternoon, and I'm feeling very fragile right now. In fact, I need to go take a minute and blow my nose.

I'm seeing my therapist again next week. I really like her. I'm on an antidepressant already, one that I've been on for years. Maybe I need a little more help for the next little while. Anyway, thank you all for being here. As I've said before, I know my blog has somewhat turned into the "all heart all the time" blog of late.

Bless their hearts, as we say down here

2009-05-27T10:25:00.001-04:00

At rehab this morning as I was doing my bit on the treadmill, one of the nurses came up to me and was all concerned. Among the stats we record every session is our weight, and last week mine bumped up--like three pounds. Ladies, you know what I'm talking about: it was right before my period landed, so it was all water weight. Bleah.

Anyway, the nurse was "concerned." She said, "You've been gaining weight. Are you doing anything differently? Sometimes once people start exercising, their appetites increase, and they start eating a lot more." I was like no, really, it's just my period. She said, "Is it fluid?" I said yes it's fluid!! Of course, the word "fluid" when you're a heart patient suddenly takes on a whole new meaning. She asked if I was on Lasix and I said no. Honestly, it's just my period. Seriously.

She was like, well, we'll monitor it this week and maybe refer you to the nutritionist next week if we need to. *eyeroll* FFS, lady. IT'S JUST MY PERIOD. HONESTLY.

And voila, when I stepped on the scale today, the three pounds had magically vanished.

I bet the same thing's gonna happen next month, too.

And the month after that as well.

It's almost as if it were on a ... cycle. *headdesk*

I know they're just doing their jobs, and they have to keep a close watch on these things, and also that some of the medications that they put people on can cause weight gain, and that fluid retention can be a sign of a problem. But really. It's just my period.

When I told Paul about it, he reminded me that they probably don't see very many pre-menopausal women there. Which is true. But most of the nurses themselves appear to be fairly young, so you'd think that their personal experience might give them a clue.

Ah well. Just another amusing anecdote in the annals of my recovery...

Birthday thanks, and adventures in baking

2009-05-17T16:02:00.005-04:00

Thanks to everyone who helped celebrate my birthday (belated) yesterday, and thanks to everyone who sent good wishes. The best present of all was getting to see so many friends and spend time with people I hadn't seen in some cases, literally, in years, as well as getting further acquainted with people I've previously just interacted with online.

Miranda deserves mad props for making me not one but TWO cakes. See, now that I'm on a low-sodium diet, I thought it would a smart thing to find replacements for baking soda and baking powder which are made from sodium bicarbonate. There's one baking powder substitute that's made from calcium carbonate, and I'd bought some.

So I gave some to M. for making my cake. Everything on the container and on the company's website said that calcium carbonate works just like baking soda, but it's completely sodium free, and that for best results, you need to just double the amount called for in recipes. So I passed that along to Miranda.

Well. As the kids today say, this calcium carbonate is MADE OF FAIL.

For those who don't know her, Miranda is in fact a first-rate baker. She made mine and Paul's wedding cake 10 years ago and has seriously considered opening her own bakery, so I highly doubt the problem was at her end...

First, she told me that the cake wasn't rising as much as expected.

Then when it came out of the oven, all the rising it did, undid itself.

THEN, it kept... shrinking. Finally, she was left with a tiny brick that she threw away, after tasting it and determining that it even tasted like @ss, too. She told me that at the point when she tossed it, the end product had less than half the volume of the batter.

We were joking that all those people who thought the LHC was going to end the world were correct--they just had the wrong LHC. It's not this one, it's my failed birthday cake, which has turned into a black hole in her garbage can, where no doubt it continues to collapse in on itself.

So she started again and did another version, which looked and tasted terrific--there was not a scrap left at the end of the night. Is that awesome or what? After the first one turned into The Singularity That's Going to Destroy Us All, most people would have said, "Screw it, you're getting a store-bought cake."

Good friends, good food, lots of hanging out and visiting. I couldn't ask for a better celebration. Thanks, everyone.

Though I do wish that whoever anonymously bought me Where the Deep Ones Are from my Amazon wishlist would say something so I could be properly appreciative... :)

A Good Day

2009-05-04T14:28:00.003-04:00

It was a good weekend, really, but yesterday was an especially good day, for several reasons. One, good friends Izzy and Dan (minus Christine who was having neck trouble, alas), and the Sanford Pottery Festival. Funnel cake and kettle corn for lunch, woo! Also lots of cool pottery things which I gamely resisted buying--even so, I still came home with a very small bowl, a Christmas tree ornament shaped like a black kitty, a crescent moon magnet, a small outhouse for my dad, and some citrus-scented body powder. Yes, that's restrained, shut up. ;)

Two, for the most part, it was a normal day. I hung out with friends, doing fun things. Then came home, washed my hair, and chilled out in front of the TV, hung out with Paul when he came in from his tennis match. We did dishes. He made pizza. And it was fine. It was normal. It was good.

Other good things from the weekend:

Friday = First of May; see this funny but NOT WORK-SAFE VIDEO:

http://www.youtube.com/watch?v=O-77ElyvRxI

Saturday = gaming group. First time playing our rpg since the end of March; it felt great to get back to the characters and dice again.

Three, cleared out the pantry of some stuff I can't really eat anymore and gave it to someone who can, so that was good.

I'm not sure if I'm explaining it well. It was just good to have a normal weekend.

One month ago today

2009-04-30T08:55:00.004-04:00

One month ago today, Paul and I were sitting in the emergency room at UNC Hospitals, wondering what the hell just happened. It would be almost 12 hours more before we would find out for sure that I'd had a heart attack, and it'll be a month tomorrow that they did the cardiac catheterization and found the tear and the SCAD and put the stents in.

Not surprisingly, I'm having a few anxiety twinges this morning. I've already done a meditation/relaxation CD and had my morning devotional and prayer time.

At some point, I'm sure the heart attack won't loom so large; it'll no longer be one of the first things I think about upon waking and one of the last things I think about before going to sleep.

I'll eventually get back to a point where I'll take for granted that I'll wake up the next morning.

There are new challenges now. A low-sodium diet for one. Remembering to take a lot of pills is another. Working on improving my stress management skills so that people and situations don't get the best of me. Finding my new limits while trying not to feel limited, if that makes sense. Making time to see friends and family.

Still trying to make sense of it all. SCADs are so rare and so random, I haven't really started too far down the path of "Why me???" because there's no good answer, physically OR spiritually.

Physically, it's "idiopathic," which is medical jargon for "we have *no* fucking clue." Which brings us back to why me, then? Dunno. Bad luck.

Spiritually, I have to ask: Did the hand of God come down and rip my right coronary artery apart to punish me? Dude, the worst thing I ever did was some petty shoplifting when I was, like 12. There are serial killers on the loose. Which brings us back around to why me? If God/dess had no hand in it, then it was truly random, bad luck.

There are lessons here, yes. This has been a big, spiritual and physical shake-up. I'm eating healthier. And while my triathlon training has been sidetracked, I'm slowly getting back into an exercise plan.

And I'm trying to remember to say "Thank you" and "I love you" to people in my life. That includes all of you (still) reading this. Regardless of when or how we met, or whether we know each other in real life or just online, thank you for being here.

Duke Study: Stress can damage your heart

2009-04-28T15:13:00.000-04:00

Duke researchers say that stress can damage your heart:

http://www.wral.com/lifestyles/healthteam/story/5032370/

Things are tough all around right now, but take it from me--try not to stress out (easier said than done, I know).

The heartbeat of an elite athlete--without the matching body

2009-04-27T15:20:00.002-04:00

So, I went in for my cardiac treadmill stress test this morning. As usual with these things, it took more time to set up and take down all the blinky, beepy, sticky, ouchie monitoring stuff than the actual test itself.

Now that I'm on all sorts of medications, my resting heart rate tends to be incredibly low. Elite-athlete low. As in, 49 bpm. And my blood pressure, not high to begin with, is likewise amazingly low, like 90/58. After getting really winded on the treadmill, my heart rate was all the way up to 94, and my blood pressure had hit 108/70.

Today was also the first of three one-hour educational classes that I need to take before my cardiac rehab exercise program begins in earnest next month. Today's was about making changes, and not to my surprise at all, the first Powerpoint slide was Prochaska's Stages of Change (though it didn't mention Prochaska by name). I first learned about these when I was working at MicroMass in Cary, at the brief tech writing job in late 1999-early 2000.

Over the weekend, my medical alert ID bracelet came. I'm wearing it now, but I'm not used to it yet. When I opened the package, my first thought was "it's a little small." Other thoughts: "It's kind of like a pet's rabies tag." "Didn't think I'd be one of those people with one of these." I figure I don't need to have it on all the time. Don't need it when Paul's around, for example. Do need it if I'm by myself, or at work, or out with friends and Paul's not there.

When I was a teenager, I used to have one of those bracelets with my name engraved on a plate. This is like that, only... not.

Also found an online store selling lots of low- and no-sodium products, the Heart Healthy Market. Additionally, I'm trying out a low-sodium crock-pot sloppy joe recipe--I'm using ground turkey breast to make it even more healthy; it's simmering away even as I type and will be ready for supper tonight.

ETA: Two thumbs up on the low-sodium sloppy joe recipe! Tastes great, and has around 105 mg of sodium/serving, compared to ... holy shit, 800 mg in my previous favorite pre-made sloppy joe mix, Hunt's Bold Manwich Sloppy Joe sauce. 800 mg! WTF???

Addendum

2009-04-23T09:19:00.002-04:00

Addendum to yesterday's entry.

I talked with my sister via phone last night, and she told me that our mom the retired nurse has now figured out how to use "the Google."

And has thus started finding, and telling my sister about, all the sites that talk about how rare spontaneous coronary artery dissections are, about how 70% are only discovered on autopsy, about how there are only around 200 cases in the literature going back to the early 1900s, several case studies where all the outcomes were "death," etc. It's true that if you Google "spontaneous coronary artery dissection," you have to go through several of the search results to get to a positive outcome, granted. But hey, there's me--a living, breathing positive outcome. :)

My sister says our mom is about as wigged out as our mom ever gets about medical stuff. Which is saying a lot, because with her background, she's usually pretty level-headed about that kind of thing. Historically it's been the rest of the family freaking out about something medical, and we would turn to her for calm, reasonable information.

Mama's also decided, and my sister concurs, that it's best not to show these sites to our dad, who has a pessimistic nature anyway. I mean, when my folks came up this past weekend to visit and bring me lunch and whatnot, Daddy, bless his heart, said to me--"Good thing this isn't 50 years earlier; they would have just sent you home with a prescription for digitalis and waited for you to die..." Now mind you, he was talking about the advances in medical science and how far things have come, and he referenced his own case of detached retinas and how if they'd happened several years earlier, he'd be blind in both eyes. But still, he can definitely be a "glass half empty" type, and I can be too.

But I'm trying to focus on the fact that my toast landed butter side up. I'm in the 30%. My dissection happened basically right there while a team of professionals could fix it on the spot. I mean, I even get to be a teaching tool; how cool is that?

But Heaven help me, my mom can Google now.

More health stuff and thinky-thoughts: the good, the bad, and the amusing

2009-04-22T21:14:00.004-04:00

Monday I had scans of my carotid and renal arteries to look for structural abnormalities. Yesterday I had another introductory session at cardiac rehab, and I had my first follow-up appointment with my cardiologist.

Mostly it was good. My non-heart arteries looked good, so it doesn't appear that I have a rare connective tissue disorder. Marfan syndrome, for example, is a connective tissue disorder, and people who have it are prone to having aortic dissections (but people with Marfan's also tend to have a distinct phenotype, which I don't have). Other connective tissue disorders can leave people with weakened arteries throughout the body. But I don't have any of those; my arteries looked fine.

The cardiac rehab session went well; it was another "getting acquainted" session--I met with the nurse, who went over my medical history with me, reviewed all the meds I'm taking, and did a very small bit of exercise testing: how many biceps curls can I do in 60 seconds? Sitting with my legs straight out, how far can I reach toward my toes? That one was a flexibility test. I'm not very flexible.

Lunch was a forgettable pizza at Brixx (note to self: despite what you think of as pizza, if it doesn't say "tomato sauce," you apparently don't get tomato sauce), then it was on to the cardiologist, after a brief consolation prize stop at the nearby bakery for a chocolate croissant. Note: chocolate croissant actually had chocolate in it.

The cardiology appointment was mostly very reassuring.

The small chest-area pains I've been having are in the wrong location to be heart-related--that's the good news. Plus good news that the rest of my arteries are fine.

The doctor is about 99.999% certain that they're being caused by a combination of anxiety/depression/stress. Most of the time I'm doing OK. I'm holding it together pretty well. I go to work, I come home, I take walks, I read books, I watch TV, I futz around online.

But honestly? Really and truly? There's a small part of me that's retreated to a little corner of my mind, and she's back there gibbering incoherently about how freakishly rare this thing that happened was, and OHMYGODOHMYGODOHMYGOD I had a freakin' HEART ATTACK. And I have a feeling that if I start crying I may never stop. I don't know how to explain it.

The bad(ish) news is that there's no regular maintenance schedule for this kind of stent; they're so new, there aren't any studies out about them that go past three years. They may last 10 or 20 years. And how will I know that they've started going bad and need to be replaced, we asked the doctor. Well, you'll start getting the kind of pain that brought you to the emergency room in the first place. Oh great.

The amusing: a bunch of the cardiologists who worked on me are all going to a conference this coming weekend, and they're taking my pictures with them to present. These are from my first catheterization, where there's initially just the small tear in my right coronary artery, but after the contrast dye is pumped in, it starts coming apart the rest of the way, dissecting in a corkscrew pattern. So what they have, essentially, is a film record of a spontaneous dissection happening in real time. Paul wants copies of the pictures--I'm not sure if I'm ready to look at them yet. Maybe in a few months.

And we learned a valuable lesson. We learned that if you take blood from me several times a day, then do two procedures through my femoral artery (which despite their best efforts, DO bleed at least a little initially), then I get my period, THEN you test me for iron deficiency--WHY YES I SHOW UP AS IRON-DEFICIENT. Raise your hand if you're surprised...

Under more normal conditions, I don't have an iron deficiency, which is good, because the ferrous gluconate was tearing up my stomach (and was another culprit for the chest pain I was having). So yay for not having to take those supplements anymore! The doc says I can just take a regular multivitamin with iron and be fine.

Work is going OK. There was a mild bit of stress this afternoon, right as I was trying to leave. It was getting the whole office in a tizzy, but I just kind of mentally put myself in a bubble and didn't let it touch me.

So good news on the scan results, updated blood tests, and mild chest pain. Not so good on figuring out when the stents will need replacing. And amusing about the pictures. As for the other, I've put a call in to my old therapist and am waiting to hear back from her.

What's baby and what's bathwater?

2009-04-20T20:11:00.001-04:00

As you might expect after a life-changing event, I'm contemplating some changes in my life, a rearrangement of priorities, a sorting of the wheat from the chaff.

This is going to be a slow process. I'm not going to make any rash decisions about which hobbies to toss or which activities to curtail.

I'll probably keep Facebook but end up killing all the assorted apps attached to it; I mean, do I really care about Superpoking all of my friends--really?

Do I care about what the crackpot fundaloonies are saying? Probably, but I don't have the hit-points to respond, and I need to work on reducing areas of stress in my life.

My top priority for the next three months is obviously going to be cardiac rehab.

As for the rest, the trick is to make sure I don't throw the baby out with the bathwater, as they say.

Do I like fanzines enough to keep producing one? I'm not sure. Do I enjoy the local sf club enough to keep on being the social coordinator? Probably, but we'll see. As for gaming, I have some thoughts there but want to talk it over with the gaming group first.

Then there's the fact that if he doesn't find a job, my best friend in the whole world may well end up moving back to Asheville in four months, and I want to spend a lot of quality time with him before he leaves town (possibly for good, because my fear is that if he leaves the Triangle this time, he won't make it back again).

So. Lots to think about.

The "hospital food" diet plan

2009-04-17T10:32:00.001-04:00

Whether it was from almost a week of icky hospital food or what, I'm down another few pounds; so far since I started in August 2008 I've removed 21 pounds total. I still have a lot of work to do, but this is a big milestone for me, and I'm pleased to have gotten here.

Also this morning was my orientation session for cardiac rehab at Meadowmont. It's a very nice facility, comparable to the gym I've been going to since August, Duke Health & Fitness. The cardiac rehab program is 36 sessions, roughly 3 months. There's a lot of careful monitoring involved, a cardiologist always on site, etc. Next week is my stress test and educational classes, and I start the exercise program in earnest on May 11th.

You know what sucks?

2009-04-14T12:39:00.001-04:00

Having a very small bit of chest pain, not being sure if it's something to worry about or not, calling your cardiology clinic, and having them tell you, "We can't see you today, why don't you call your primary care physician?"

WTF, UNC Cardiology? Seriously?

So I called my primary care physician, who also said WTF, UNC Cardiology? And also, please come in, we will see you, and also, oh, and we have a cardiology clinic that we refer people to that we're almost 100% certain wouldn't have said any such thing to you had you called them and said what you did.

Paul: Brief Update

2009-04-13T00:13:00.003-04:00

Better day by day:

http://paulcory.livejournal.com/150891.html

Previous

Laura says: And that's pretty much the story of my heart attack, in real time, as Paul and I blogged it. As I'm writing this now, on August 23rd, 2009, I've cut and pasted our entries from our various journals here to consolidate them, but what you're seeing is what we wrote at the time.

Go back to the beginning

Found some other women who've survived SCAD

2009-04-11T13:57:00.005-04:00

One thing that's helped is that I've found some other women who've survived spontaneous coronary artery dissection (SCAD), and I've joined an online support community. This is mostly for my own info, but in case anyone else ever needs to refer a female friend or relative to a support group for women with heart problems, here's a little banner thingie:

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Gah, the Internet is both blessing and curse

2009-04-08T09:48:00.005-04:00

Last night I spent a lot of time researching the particular make and model of the stents I have. Turns out that the ones they installed--the Xience V--are pretty much the top of the line. There are no studies going out past three years, but for those three years, these stents perform better than any of the others on the market. So that's all reassuring.

Moving on to research topic #2, I discovered that 70% of spontaneous coronary artery dissections are only discovered on autopsy. That wigged me out. I had to get off the computer at that point and go collect lots of hugs and kisses from Paul before I could stop being freaked out enough to go to bed.

In other news, it has been suggested that nail polish remover might suffice to get all the @^$%#$ tape residue off, from all the heart monitor sensors, various ekgs, assorted iv lines that were taped down on my arms and neck, etc. Perhaps I will go try that now.

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Paul: Frickin' Monday!

2009-04-06T21:02:00.003-04:00

Back at the hospital:

http://paulcory.livejournal.com/150036.html

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And back home again, again

2009-04-06T20:50:00.003-04:00

Got home around 6. Napped, just finished supper. Basically, all my tests were fine, heart enzymes are still appropriately trending downward, it's just, as suspected, slight loss of some lung function due to being bedridden for nearly a week. Now that they've given me the lung-exercizer thingy that one of the docs as much as admitted to Paul that they should have sent home with me the first time around, we expect everything to be OK.

Thanks again for all the support and for listening to me vent. :)

Now it's Paul's turn: we got home, he reached for a couple of SweetTarts and promptly broke a tooth on one. :/

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One step forward, one step back

2009-04-06T11:52:00.004-04:00

So, I'm back in the hospital.

Sigh.

Much as I really, really, REALLY didn't want to admit it, late last night I had to confess to Paul that I was having trouble occasionally getting a full breath. And that's one of the red flags that we've been told to watch for, so at roughly 11:30pm last night, we packed ourselves into the car and drove back to UNC Hospitals for another round of EKGs, blood draws, and endless waiting.

I'm not in the ICU; I'm just in a room in the regular unit.

The other good news is that pending a 1pm-ish blood draw result, we'll be able to go home.

My cardiologists don't think we were silly to come in. OTOH, they're pretty sure that what happened to me is a fairly common side effect of being laid up in bed for the better part of a week: a very small part of my lower left lung has slightly collapsed--they even have a special breathing exercise device that they usually send home with open-heart surgery patients to help prevent this exact thing, but they apparently didn't think to give me one because my surgery was all done through the leg cath.

The general feeling is better to be safe than sorry, and this is all new territory for Paul and me, as we're learning a whole new standard of what's "normal" for me. :/

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Home, Yay!

2009-04-05T19:40:00.003-04:00

I'm home, I'm home, I'm home!!!

Thank you all so much for your prayers, well wishes, lit candles, positive thoughts, etc. They meant the world to Paul and me both. It was such a thrill to sleep in our own bed, beside Paul, uninterrupted for 10 hours straight last night. Being home with him and the cats is a wonderful restorative.

Here's an amusing tidbit from the past few days: you know you're in a hospital in the South when they serve you *fried chicken* in the cardiac ICU.

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Paul: Laura Update - Home at @$%#$!!! Last!

2009-04-04T19:42:00.004-04:00

Ahhh, finally home:

http://paulcory.livejournal.com/149992.html

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Paul: Laura Update - Waiting for the Doctor sucks

2009-04-04T16:53:00.004-04:00

Waiting for the doctor--will we be home before the UNC men's semifinal NCAA basketball game?

http://paulcory.livejournal.com/149697.html

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Paul: Laura Update - Waiting for the vampire sucks

2009-04-04T14:29:00.003-04:00

One last blood draw:

http://paulcory.livejournal.com/149485.html

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Paul: Laura Update - Continued Improvement

2009-04-03T22:21:00.004-04:00

Maybe home Saturday?

http://paulcory.livejournal.com/148790.html

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My recent escapades

2009-04-03T09:43:00.003-04:00

Most of you already know, thanks to Paul's regular updates to his blog, but for those who don't know: I had a heart attack on Monday morning. No, this isn't a late April Fool's joke; I wish it were.

Details on Paul's blog, starting here: http://paulcory.livejournal.com/146142.html

We appreciate all the comments, prayers, good thoughts, etc that people have been sending. this is my first time online since this all started Monday, but Paul has been reading people's comments to me and they really do help lift my spirits. If all goes well, I'll be moved from the cardiac ICU today and into a regular room, then maybe home tomorrow. Thanks again to all of you, and I'll post again as my energy level permits.

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Paul: Laura Update - Good News

2009-04-02T18:23:00.003-04:00

Good news:

http://paulcory.livejournal.com/148519.html

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Paul: Laura Update - Grrr, and Worry

2009-04-02T12:12:00.004-04:00

Another heart cath, sigh:

http://paulcory.livejournal.com/148157.html

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Paul: Laura Update - Improvement

2009-04-01T22:34:00.003-04:00

Improvement:

http://paulcory.livejournal.com/147924.html

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Paul: Laura Update - How Low Can it Go?

2009-04-01T09:39:00.003-04:00

Post-cath blood pressure through the floor:

http://paulcory.livejournal.com/147587.html

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Paul: Laura Update 4

2009-03-31T19:17:00.003-04:00

More info:

http://paulcory.livejournal.com/146991.html

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Paul: Laura Update - With Extra WTF?!?

2009-03-31T15:19:00.005-04:00

In the cath lab:

http://paulcory.livejournal.com/146604.html

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Paul: Laura Had a Heart Attack Monday Morning

2009-03-30T23:59:00.002-04:00

Here's Paul's first post:

http://paulcory.livejournal.com/146142.html

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