“Best narrative I have ever encountered on this topic”

4 Mar
 
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 2018 Winter Bulletin.

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, 2017.

“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 80th 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 95% 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 list for 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 – 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. the concluding chapter, 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 for 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.”

A Woman’s Guide to Living with Heart Disease: 2017, John Hopkins University Press. Baltimore, Maryland, ISBN 1421424207 (paperback)

© 2018 – 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: Are you living with heart disease? If so, which chapter speaks to your own personal experience?

See also:

 

8 Responses to ““Best narrative I have ever encountered on this topic””

  1. RN in NYC March 7, 2018 at 6:38 pm #

    I just finished reading “A Woman’s Guide…” I could not put it down. Read it in a day and a 1/2 straight through and thanks to YOU I got hardly anything else done last weekend! Every nurse and every doc I work with should be reading this, and every woman lying in every hospital bed recuperating from an MI needs to be given a copy before being discharged home. My only wish: the title doesn’t even begin to capture this memoir’s dramatic appeal. It should be something like “A Woman’s Guide to LIFE ITSELF!”

    Liked by 1 person

    • Carolyn Thomas March 7, 2018 at 7:36 pm #

      Thanks RN – you made my day! My publisher and I disagreed about this title, too (although your “Life Itself” suggestion was NOT one of the options offered to me!” 🙂

      Like

  2. Pilgrim125 March 4, 2018 at 1:03 pm #

    Hoping your great story and important information gets to the many, many people that need to know it! You rock!

    Liked by 1 person

  3. Charlotte Burnham March 4, 2018 at 11:16 am #

    Oh, Carolyn I’m almost embarrassed to admit that, in spite of how educated I’ve become about heart disease and self-advocacy, it was Chapter 2 that resonated so clearly with me.

    I wrote to you a few weeks ago about how I was preparing myself to go to my primary care doctor to fight for myself about the symptoms I’d been having — chest pounding that was most likely secondary to steroid treatment for an autoimmune disease. I was concerned about damage being done to my heart, but getting the Drs. to listen to me is always a hurdle. Well, the Dr. did an EKG which was normal, but listened to me enough to order a monitor–it was to be a 2 week monitor–an electronic patch where I clicked it when I felt the symptom and then logged the details of the symptoms on their website. The problem was that the symptoms kept getting worse, more intense and more frequent. When people asked what it felt like, my answer was “it feels like I’m having a heart attack” (Hello? You think that would have been a big clue for me about what I should do!!!)

    But, the test was for 2 weeks. I wasn’t scheduled to see the cardiologist for 2 weeks. I was supposed to wait the 2 weeks. And there was no way I was going to go to an ER only to be told that there wasn’t anything they could do (or it was anxiety, the steroids, etc.) and I just needed to wait the rest of the 2 weeks to finish the test. Until the end of the first week (just 3 weeks ago). That day, I had 13 “events” with the next-to-last one being at the end of a massage.

    Now when your heart starts pounding and you are short of breath while you are getting a massage, it becomes pretty obvious that something is really wrong! I waited the episode out (it took longer than any other to subside) and then drove myself home (I know…) When I got home 5 minutes later the next “event” had started up again–even worse. This time it wasn’t subsiding and now I knew that I wasn’t going to make it another hour without help, much less another week and called for the ambulance. The next day I had 3 stents placed to open up the 95% blockage in my LAD.

    I was just trying to be a “good patient” and follow what they’d told me to do. I also was being an incredibly stubborn patient who did not want to be in the ER with people patting me on the head telling me that I was being overly anxious and that “everything was just fine”, which was essentially what I felt like I’d already heard at the primary care doctor’s office.

    What really irritates me about this is how easily I fell into these patterns, when I already knew how dangerous they can be!

    Liked by 1 person

    • Carolyn Thomas March 4, 2018 at 3:30 pm #

      Oh, Charlotte! I hear you, honey! You were indeed being a “good patient” – just like we’re raised to be. You are also a lucky patient because you decided to call the ambulance. Hope you’re now doing well.

      Chapter 2 is called “Deadly Delay” and it helps to explore women’s embarrassing tendency called “treatment-seeking delay” behaviour – even during significant cardiac symptoms! Thanks so much for sharing that story – it will be an important cautionary tale for many others reading this!

      Like

  4. Sandra Sizer March 4, 2018 at 7:53 am #

    I almost cried when I read Ch 6, “I’m what a person with an invisible illness looks like”.

    It validated me, assuring me that I wasn’t just whistling Dixie, by describing so exactly what I’ve been going through for the past 7 years. I asked both my cardiologist and my PCP to get a copy and read it. And I copied the opening paragraphs of the chapter into my iPhone’s Notes just in case I need a “booster shot”.

    I can’t speak highly enough about this book, and about Carolyn’s way of accurately translating “med speak” into plain English.

    Liked by 1 person

    • Carolyn Thomas March 4, 2018 at 9:46 am #

      Thanks so much, Sandra. I’m so glad to see your thoughts on this! I had to go re-read what I wrote in those opening paragraphs of Chapter 6 (that’s the part where I finally return to my weekly Toastmasters meetings after my heart attack – where, like most people living with an invisible chronic illness who look and sound the same as before, I’m asked: “So, Carolyn – this was REAL, then? Not just, like – STRESS LEAVE?”

      Like

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