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The Heart Sisters Blog: Feature Interview with Carolyn Thomas

Interview by Jodie Elrod

Interview by Jodie Elrod

In this interview, EP Lab Digest had the opportunity to speak with Carolyn Thomas, patient advocate and founder of the Heart Sisters blog (http://myheartsisters.org/).

Tell us about your myocardial infarction in 2008 and initial misdiagnosis.  

My heart attack story actually began two weeks before I was finally hospitalized for that heart attack. In May of 2008, I was sent home from the ER with a misdiagnosis of GERD — despite presenting with central chest pain, severe nausea, sweating, and pain down my left arm. When I left the ER that morning, I felt so embarrassed for having made a big fuss over nothing that when my symptoms later returned (of course they did!), there was no way I was going back to that ER for help.

After all, a man with the letters “M.D.” after his name had told me quite clearly: “It is NOT your heart!” 

Two horrible weeks of popping Gaviscon and Tums for increasingly worsening symptoms went by, until I was no longer able to even walk more than five steps without stopping. I forced myself back to the same ER (still not believing it was actually my heart), intent on getting some serious drugs for this brutal case of acid reflux. But this time, the ER staff called in a cardiologist, which they hadn’t done at my previous visit. When he arrived, he sat at my bedside and told me that my diagnostic tests clearly showed I had significant heart disease. My LAD was fully occluded, and a stent was later implanted. Afterward in the CCU, physicians there told me that the type of MI that I suffered was the deadly “widowmaker” heart attack. 

Continued symptoms and complications post-discharge from the CCU led to more tests and procedures, and I was subsequently diagnosed with coronary microvascular disease, a severely debilitating chronic condition. This led to a referral to a pain specialist at my hospital’s Regional Pain Clinic for treatment of refractory angina.

Why did you create Heart Sisters? What is your main goal? 

I launched the blog Heart Sisters about a year after my heart attack. By then, I’d attended the WomenHeart Science & Leadership Symposium for women with heart disease at the Mayo Clinic (I was the first Canadian ever accepted for this community educator training). I’d started speaking at events I called “Pinot & Prevention” parties (mayocl.in/1pjoVzK) to share what I’d just learned about women’s heart health during a Mayo training. These events were fun, after-work potlucks hosted in private homes (wine and “heart-smart” appetizers served), during which 20-25 friends would listen to me speak about women’s heart health for about 90 minutes. Each presentation I did resulted in more requests to do future talks for different groups. One audience member described these talks as “part cardiology bootcamp, part stand-up comedy!” Soon I was booking weekly P&P events, scheduled 3-4 months in advance, and was also being invited to speak to larger audiences at conferences and hospital employee events. The Mayo Clinic reputation opened many, many doors for me.

At the time my Heart Sisters blog was just a little three-page static website, an afterthought designed to provide basic info on how to book one of my heart presentations. Then one day I decided to add an article or two about some of the more common questions women were asking during my talks, and before I knew it, Heart Sisters kept growing and growing.

The WomenHeart Science & Leadership Symposium training at Mayo Clinic truly changed my life. At Mayo, I met a faculty comprised of women cardiologists from across the U.S., each sharing the latest in emerging research on women’s heart disease. I also met 45 other heart patients, aged 31 to 71; one-third of them had been misdiagnosed just like me and sent home from the ER in mid-heart attack. I learned that, as reported in research published in the New England Journal of Medicine, female heart patients in their 50s or younger are seven times more likely to be misdiagnosed during an MI and sent home from the ER compared to male heart patients. There was a compelling sense of caring sisterhood throughout those five days of training, hence the name of the blog I launched six months later. 

I’ll never forget one woman in particular, who told us that she’d been sent home from the ER three times despite her textbook cardiac symptoms. 

At the third visit, the ER staff suggested she might need to consider taking antidepressants. 

At the fourth visit, she underwent double bypass surgery. 

But although she’d been sent home from the ER all those times before finally being correctly diagnosed, she was smart enough to keep going back. She just kept saying to those ER docs: “I don’t care what the tests say. SOMETHING is wrong with me!” She was able to push through any embarrassment over making a fuss about nothing. She was saving her own life! I now tell her story at every public presentation I do. 

I also like to ask my readers and my audiences this question: “What do you think I would have done had it been my daughter experiencing my heart attack symptoms instead of me?” The answers are always the same: we all know that we’d demand immediate help for those we love. So why don’t we expect and demand the same help for ourselves

Discuss the growth you’ve seen over the years with the Heart Sisters blog. 

My Heart Sisters blog attracted a total of 27,000 views during its first year in 2009. Six years later in 2015, that annual number had exploded to over 3.6 million views! So far, that’s over 6.5 million views in total from 190 countries. I’m beyond thrilled! There is a really compelling bar graph (bit.ly/1QQmKdI) showing my annual site views climbing.

Why is it so important for doctors to take into consideration gender differences in women’s cardiovascular health? 

I think the recent American Heart Association’s first-ever scientific statement on women and heart attacks (bit.ly/1QQmN9v) sums it up: myocardial infarctions in females are under-diagnosed and under-treated, even when appropriately diagnosed, compared to our male counterparts. This conclusion is disturbing for many reasons, not the least of which is that it’s long overdue that a scientific statement on women’s heart attacks was finally issued. I’ve been saying the same thing (e.g., Women are not just small men) for eight years. So it’s a relief to see an official AHA scientific statement at last. Perhaps this will inspire an actual shift in cardiovascular treatment and diagnostic protocols so we can stop acting surprised by these findings year after year.

Last fall, I was honored to be invited to speak at a medical conference on women’s heart disease at Mayo Clinic; it was my first visit back to Rochester since I attended the Science & Leadership training there in 2008. It was so inspiring to hear speaker after speaker during that two-day conference: cardiologists explaining unique differences in women’s heart disease presentation, diagnostics, treatment and outcomes, or how they had successfully established Women’s Heart Clinics at their own hospitals, or had made changes in their practice based on evidence-based gender-specific research that was now showing superior clinical outcomes among their female patients. I’m cautiously optimistic that this growing trend can very soon trickle down to the bedside, to how medical students are taught, and to the gatekeepers who work in emergency medicine. 

What are most common questions you get asked from visitors to your site? What issues are patients most concerned about in general? Have patient concerns changed over the years?

The #1 search term that new readers type in to find my blog in the first place is this: “Am I having a heart attack?”

So not surprisingly, my #1 most-read blog post by far is one called “How Does It Really Feel to Have a Heart Attack? Women Survivors Answer That Question” (bit.ly/1LVoA01), based on my interviews with 22 heart attack survivors in 2009. In second place is a 2012 blog post on how women can identify early warning signs of heart attack (bit.ly/224cfhw).
Existing heart patients often want to know if they will ever start feeling “normal” again. Depression is a huge yet profoundly under-recognized reality among female heart patients. Mayo cardiologists estimate that up to 65% of women suffer from significant “situational” depression post-diagnosis, yet fewer than 10% of these cases are appropriately identified by their cardiologists. As cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once explained (bit.ly/1RTIMyD): “Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.

The patient concern that I’m seeing far more now in my readers compared to when I launched my blog in 2009 is the subject of doctor-patient communication and the basic lack of common courtesy that they perceive as pervasive throughout the healthcare system. For a good example of this, consider U.K. physician-turned-terminally ill patient Dr. Kate Granger who, appalled by the rudeness of so many healthcare staff she encountered during her hospitalizations, started the now-global “Hello, My Name Is” (http://hellomynameis.org.uk/) campaign for more compassionate care in order to convince healthcare providers to simply introduce themselves to each patient before touching that person. 

Of the Heart Sisters blog, @Heart Sisters on Twitter, and Facebook page, where do you receive the most feedback? Why do you think this is? Who (and where) does your audience on Twitter and Facebook mostly consist of? 

Patients tend to share feedback via blog comments or Facebook, while doctors/nurses are more likely to interact on Twitter. As a group, health care professionals make up only a very small percentage of active Twitter users. A few hundred MDs follow my Twitter feed @HeartSisters, about the same with nurses and paramedics. A good-sized group of professional health journalists also follow me. 

The majority of my blog readers are existing heart patients (and women who are worried they might become one) or family/friends/caregivers of patients. I also have a surprisingly large following of breast cancer bloggers/patients (I don’t write about breast cancer, but I do write a lot about the patient experience and the psychosocial fallout from a catastrophic diagnosis that seems to resonate with non-cardiac patients, too). Geographically, the vast majority of my readers live in the U.S., followed by the U.K., Canada, and Australia. 

I’m always thrilled when physicians follow my blog. One New York cardiologist is a regular reader who once described my blog posts as: “something wonderful in the noisy blogosphere”. I cite specific journal references whenever I write things like “studies suggest that…” in a blog post. I don’t make this stuff up. I like evidence!

Here is a small example of a typical and almost daily Twitter interaction: recently a fire captain/paramedic tweeted me a link to a JAMA article reporting that 42% of women have no chest pain during STEMI. This is exactly what I’ve been writing and speaking about for eight years; he follows my blog so he knows that. His Tweet to me said: “You might be interested in this, @HeartSisters.” I just love it when this happens! I do the same when I find something interesting that one of my healthcare provider followers might not have seen yet. It’s the beauty and utility of social media — when we can make it a timely two-way street of communication about shared interests/goals! I would love to see more physicians/nurses/paramedics engaged on social media for this reason. 

Whenever I speak to medical groups, I now urge them not to abdicate their traditional role as educators, because if clinicians are not already on social media helping to inform the public about important topics in their particular field of medicine, then the kooks out there will be doing the educating for them. Please don’t let this happen!

How often do you travel for speaking engagements? What topics do you most often cover?

I prefer speaking locally because travel is so difficult for me given my ongoing cardiac symptoms. The topics I most often like to cover in general include women’s heart health, or specifically the patient experience — no matter the diagnosis. I’m often invited to speak based on a single blog article’s unique content. For example, I recently spoke on the subject of patient privacy in an era of online sharing (about which I’d written a three-part series of articles on Heart Sisters). Thanks to the miracle of technology, I’ve occasionally been able to deliver virtual presentations to faraway audiences — from medical conferences in Boston and Toronto to students at the University of the Philippines College of Medicine — all via my laptop while sitting at my kitchen table.

The Vancouver Coastal Health Research Institute noted that the “Heart Sisters blog shows there is a demand for complex medical information to be presented in an accessible way.” Why is knowledge translation so crucial?

Well, here’s an answer based on a real-life doctor-patient interaction from a website called HealthTap (www.healthtap.com). This is basically a dating service between patients looking for a new doctor and docs looking to expand their practices. The site attracts views by claiming to be an online Q&A resource for patients. 

A patient writes in to ask: “What caused the arm pain during my recent heart attack?

A cardiac surgeon (identified by name, city, photo, and contact info) replies to this patient: “The pericardium is innervated by C3,4,5 (Phrenic nerve). There may be some neuronal connections to the intercostobrachial nerves.

Really? Seriously. This patient needed a knowledge translator! 

After my heart attack, I taught myself the basics of how to read and comprehend journal papers on heart-related research. I’m not a scientist (although I was married to one for 20 years — does that count?!), but by now I can figure out how to make sense of an abstract and also how to look for important factors in a study’s methodology (e.g., how many women, if any, were included in the research). There is a certain elitist communication style deliberately employed within academia, almost as if to keep the hierarchical distance intact between their ivory towers and the mere mortals below. Social scientists actually assess this distance with a readability rating scale called SMOG: Simple Measure of Gobbledygook. Most medical journal papers would fail the SMOG test. As I learned more about how to plough through the gobbledygook, I decided to put my extensive notes and translations to better use by creating a patient-friendly, jargon-free glossary (bit.ly/1UjyZUy) of complex cardiac terminology on my website. There are now hundreds of acronyms, abbreviations, and definitions listed on this page, free and accessible to all! I’m really proud of this knowledge translation resource.

What advice do you have for other women about heart disease?

There is already plenty of advice out there for women (and men) about how best to prevent or live with heart disease. People far above my pay grade are working hard advising women on eating healthy, maintaining a healthy weight, getting regular exercise, quitting smoking, controlling blood pressure/cholesterol, taking their meds, getting a good night’s sleep, managing chronic stress, building important social connections, and more. Don’t wait until you become a heart patient to start addressing significant lifestyle improvements that will not only help your heart, but make you feel a whole lot better every day. 

What I prefer to focus on is urging women (and men) to start acting like responsible grownups when it comes to their health. Knowledge is power. Do some homework. Make a plan. Then walk the talk. Start small, as the late tennis great Arthur Ashe once advised: “Start where you are. Use what you have. Do what you can.

Tell us about your involvement with The BMJ to be a Patient Reviewer for cardiology papers submitted to the journal for publication. 

The BMJ is unique among other medical journals in this innovative attempt at genuine inclusion of the patient voice where it really matters: in the published journal articles that physicians read, as part of their established peer review process. There are now about 300 of us volunteer patient reviewers for The BMJ around the world. I felt apprehensive in 2014 when facing the first cardiology paper I was asked to review. As I said in an email I later wrote (bit.ly/1SGUUW3) to The BMJ editor, I’m “a non-scientist who wouldn’t know a Hosmer-Lemeshow test from my left elbow at the best of times!” How on earth would I, a mere patient, know what to say or how to say it? So I carefully re-read The BMJ’s patient reviewer guidelines (bit.ly/1i5DDEc). The first question of those helpful guidelines is: “Is this an issue that matters to you, other patients, and carers?”

That really focused my attention on what I do know, and it turned out that the first paper was on a subject that I’d written at least two blog articles about. For any of your readers who are interested in learning more about how patient review works, The BMJ welcomes inquiries (bit.ly/1i5DDEc).

What is your main takeaway message for doctors?

I do have a couple of thoughts. One is Dr. William Osler’s famous reminder, which I’m paraphrasing here as: “LISTEN to your patient. She is telling you the diagnosis.
Secondly, I’m starting to believe that what we don’t need more of is yet another cardiac study concluding that (in the words of Laura Haywood-Cory, who survived a heart attack at age 40 caused by spontaneous coronary artery dissection): “Sucks to be female. Better luck next life!

As I urged in one of my Heart Sisters blog articles on cardiac gender bias (bit.ly/24TUWyL), what we need now is less talk and more walk when it comes to women’s cardiology diagnosis, care, and outcomes.

What’s next for you? 

Long ago, before I had to leave the workplace following my heart attack and subsequent cardiac issues, my 35+ year career had been spent working in public relations. My PR friends still tease me that what I’m doing now (writing and speaking) is just what happens when a PR person has a heart attack. It’s all we know how to do! This year, I’ll be focused on writing a book, which means far fewer new blog posts and even fewer of my public presentations on women’s heart health. My health has to come first these days, so any “what’s next?” future plans will depend on protecting that precious commodity.