“Best narrative I have ever encountered on this topic”

 

Thanks to John Sawdon and his Cardiac Health Foundation of Canada colleagues for including this chapter-by-chapter overview of my new book in their Winter Bulletin.

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Book Review for “A Woman’s Guide to Living with Heart Disease”

Written by Carolyn Thomas, a Canadian living in Victoria, B.C. and author of the blog Heart Sisters; foreword written by Martha Gulati, MD FACC, Chief of Cardiology, University of Arizona and Editor-in-Chief, CardioSmart – American College of Cardiology.  Published by Johns Hopkins University Press.

“Carolyn Thomas begins Chapter 1 with her very first heart attack symptoms and the decision to seek immediate medical help at the Emergency Department of her local hospital. She is misdiagnosed, however, with acid reflux and sent home.  This dramatic introduction is followed by what researchers tell us about women’s heart attack symptoms, and includes brief case studies of women who describe their own surprisingly varied heart attack symptoms.

“In Chapter 2, Carolyn describes the two weeks following her misdiagnosis, including a flight to Ottawa to celebrate her mother’s 80^th birthday, all while experiencing increasingly disturbing daily symptoms of chest pain, nausea, sweating and pain down her left arm. Despite these textbook heart attack symptoms, she describes feeling reluctant and embarrassed to return to the ER, worried about being sent home again for a mere case of acid reflux.  

“In this chapter, she details the common arguments that women frequently use to deny their cardiac symptoms. She explains how women often respond to other crises in their lives, but engage in what’s called treatment-seeking delay behaviours when it comes to their own health needs, quoting a compelling Mayo Clinic study on women’s priorities, and asking women to self-assess.

“Chapter 3 begins as Carolyn has somehow made it back home to the west coast from her Ottawa trip. She has already decided to return to the ER, although she’s still convinced that her debilitating symptoms are due to the acid reflux she’d been diagnosed with by a man with the letters M.D. after his name. But this time, the ER staff treat her very differently:  they call in a cardiologist (which they did not do two weeks earlier). And this time, the cardiologist informs her that she has “significant heart disease”, not acid reflux at all.  In the rest of this chapter, she explores the differences between men and women’s heart disease, including gender bias, diagnostic outcomes, methods for reducing your own chances of misdiagnosis, and the changes that must happen.

“In Chapter 4, Carolyn finally undergoes an immediate emergency procedure: she has a stainless steel stent implanted in a blocked major coronary artery. It’s only when she is finally treated and discharged from the CCU (the intensive care unit for cardiac patients) that she feels overwhelmed what she has survived. She cites research that explores why hospitals generally fail to give women sufficient information about what to expect before they are discharged from the hospital. She shares with readers a list of things she wishes she had known before being sent home – including tips on facing “the homecoming blues”. Two practical lists are offered:

• One list is for yourself (expectations about setting limits on visitors in the early days while recuperating, for example), as well as commonly experienced post-heart attack problems (like crushing fatigue) that are often surprising to the newly-diagnosed heart patient. 
• The second list contains suggestions for those who care about you and want to help.

“Carolyn takes the reader through this new paradigm of becoming a patient, and the impact it can have on one’s life. She also shares the reality of her subsequent diagnosis of coronary microvascular disease, in addition to the atherosclerosis that had caused what doctors call her “widow maker” heart attack. She closes the chapter by introducing her connection to the Mayo Clinic’s WomenHeart Science and Leadership Symposium for Women with Heart Disease, and the resulting impact of this training on her life.

“Chapter 5 begins with Carolyn’s personal story about her own distressing experience with post-heart attack depression, her adamant denial of that diagnosis, and her ultimate acceptance. She references a number of researchers in discussing the under-diagnosed “situational depression” that so often follows a chronic illness diagnosis like heart disease. She describes how her (now former) doctor repeatedly ignored her pleas to refer her for professional psychotherapy help. This leads to a discussion on the societal stigma of mental illness and its impact on personal choices when seeking help. She concludes the chapter by encouraging doctors to recognize the pervasiveness of depression that heart patients experience, and to warn their patients before hospital discharge that such depression is usually predictable, temporary, and treatable. She also provides a useful list of non-drug ways to deal with depression, and shares her recommendation for online support groups.

“As someone who has heart disease and has experienced depression, I find Carolyn’s sharing of her experience while normalizing the situational depression one of the best narratives I have ever encountered on this topic.”

“In Chapter 6, the focus is on the feel and look of an invisible illness. Carolyn, who now lives with coronary microvascular disease in addition to having survived a heart attack, continues to experience shortness of breath and severe angina. She explores the impact of comments like: “You look good!” because her suffering doesn’t show –  including the dismissive assumption: “Did something serious really happen to you?” She introduces the topic of “healthy privilege”  – that’s the expectation of good health that so many people take for granted. Within this model, she explains how researchers describe this concept in those who have no clue about the symptoms, pain or stigma that others may be experiencing – because those others live with a medical condition that is not readily visible. This is precisely what individuals with a mental illness often experience, too. Carolyn offers frank examples of her own healthy privilege in her pre-diagnosis past. She summarizes this chapter by providing a practical ‘To Do’ list – specifically around the common “I’m Fine” response – along with links to research illustrating that people who do not acknowledge their own reactions can actually end up with more serious cardiovascular outcomes.

“Chapter 7 can be summarized as a discussion on “trying to find meaning in a meaningless diagnosis”. Carolyn takes the reader on a journey of one-upman/womanship in terms of illness/procedures, transitioning into the role of patient advocate, and summarizes with an appropriate Arthur Ashe quote. She also differentiates between inspirational suggestions for lifestyle improvement that happen to you and inspiring ideas happening within you that can actually move you to action. Within this chapter, she references trauma and traumatic experiences, along with a recommendation for the book, “When Bad Things Happen to Good People.”

“Chapter 8 is entitled On Being a Good Patient, reviewing Carolyn’s own experience of being treated by doctors, nurses, technicians and others involved in health care. She references doctors, herself and others in describing the powerlessness of becoming a patient, and how being treated disrespectfully can hurt. To support what researchers call etiquette-based medicine, she provides a Top 10 listfor healthcare providers on how patients should be treated.  Carolyn references doctors who have suddenly become patients, and the profound impact this inevitably has on their lives and on their relationships with their own patients. She closes the chapter with a discussion on what happens if you are labelled a “difficult” patient, including the fear of not being treated fairly or effectively. Her parting advice suggests standing up for yourself – yes, even if that means being called difficult.

“Chapter 9 focuses on the “new normal”, which for Carolyn now means learning to live with her diagnosis of coronary microvascular disease. Along with this is crushing fatigue, angina, shortness of breath, inability to continue her career, and a membership in the chronic disease club. She discusses the emotional shift that one needs to make as a survivor who’s trying to face each day with a sense of resilience instead of despair. She again provides helpful lists including profound life learnings from her diagnoses, humour and heart disease, before sharing her own contrary take on the popular concept of a Bucket List. She concludes the chapter by explaining what she’s learned from her own chronic illness about how to develop self-compassion.

“The final chapter, Chapter 10, is Carolyn’s pitch for the possibility of “making peace” with the organ that you may have initially blamed for letting you down, and warns how one can become consumed negatively by a traumatic experience with heart disease. She suggests that if you find yourself in this place, you should reach out to a specialized professional who understands the realities of living with chronic disease and can relate to what you may be experiencing. Carolyn encourages the reader to remember that if you did survive a serious cardiac event, it’s largely thanks to your precious little heart. If your heart wasn’t functioning or did not have capacity to function, you would not be here now.

“Carolyn’s book concludes with a list of helpful books and online resources that a woman with heart disease should consider. It also provides an impressive glossary of complicated cardiology terms by creating user-friendly, jargon-free translations for heart patients and their caregivers.

“This is a well-referenced book that details the moving personal memoir of one woman’s heart attack, survival, and resulting discovery of an additional life-altering heart disease diagnosis, plus the emotional roller coaster that ensues during recovery – along with practical suggestions for all heart patients to both manage this process and thrive.”

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A Woman’s Guide to Living with Heart Disease: John Hopkins University Press. Baltimore, Maryland, ISBN 1421424207 (paperback)

© Cardiac Health Foundation: The Cardiac Health Foundation is a Canadian charitable organization dedicated to supporting cardiac rehabilitation and the advocacy of heart disease prevention and education across Canada.

 

♥ NOTE FROM CAROLYN: Special appreciation to John Sawdon at the Cardiac Health Foundation for his support. John wrote to me after sending me this review: “I now take your book with me to my heart health presentations; people are genuinely interested in the book when I discuss the differences between men and women, using your story.”   Thanks John!

Q: Which chapter speaks to your own personal experience?

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See also:

Read other reviews of my book here!

“Very different from other heart books”: my Q&A with Johns Hopkins University Press

Can’t wait to start reading my book? Here’s Chapter 1!

A Woman’s Guide to Living With Heart Disease: my blog-turned-book project!

Happy, Healthy Heart Month with Carolyn Thomas (a review written by somebody who knows every word of this book just as well as I do – my very own book editor, Deborah Bors, who wrote this essay for the Johns Hopkins University Press blog!