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Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease Paperback – January 13, 2023

by Tracy Livecchi (Author), Liza Morton (Author)
4.8 out of 5 stars 26 ratings
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Full of evidence-based, easy to understand information about CHD, Healing Hearts and Minds offers strategies for learning to thrive despite living with this condition, but most importantly it will offer hope and connection.

Congenital Heart Disease (CHD) is the most commonly diagnosed birth abnormality in the US. With great advances in surgery and medicine, however, survival rates have improved by 75% since the 1940s. Welcome news, of course, as only a few decades ago these birth defects were considered a death sentence, but as with any chronic condition, survival does not mean the issue is cured. With better medical care, babies born today with CHD have a good chance of surviving, but throughout their entire lives they can face surgeries, invasive treatments, lifelong monitoring, frequent medical check-ups, and significant limitations on physical activity, in addition to poor public awareness which can have an impact on social inclusion and understanding. Much attention has rightly been focused on the medical needs of these children and on providing their parents and caretakers with resources and information to navigate the complexities of this chronic condition.

Little attention, however, has been paid to the psychosocial impacts on these individuals, especially as they grow, mature, and become adults living with a serious, chronic medical condition. Prevalence rates for anxiety, depression, and PTSD are significantly higher (2-3x in some cases) for people living with CHD than the general adult population. From feeling self-conscious about scars and limitations on physical activity and sense of loss around so many of life's little normalcies, to frequent hospital visits and living in constant fear of an emergency, this condition is ever-present. Liza Morton and Tracy Livecchi are both mental health professionals who have developed a specialty in working with clients who have chronic medical conditions, and they are both themselves living with CHD. In this book they set out to provide the resources and support they have been looking for their entire adult lives. While their powerful personal stories are woven into the narrative, the book is focused on providing evidence-based coping and self-care skills for adults living with CHD.
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  1. Print length
    304 pages
  2. Language
    English
  3. Publisher
    Oxford University Press
  4. Publication date
    January 13, 2023
  5. Dimensions
    9.31 x 0.79 x 6.16 inches
  6. ISBN-10
    0197657281
  7. ISBN-13
    978-0197657287
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Editorial Reviews

Review

"gives much needed attention to the emotional experience of living with CHD, providing every reader with compassion, tools, resources, and hope." -- Karla Deal, Adult Congenital Heart Association

"Tracy Livecchi and Liza Morton share a story of courage and hope for those who are living with a congenital heart condition. The authors through their own experiences give voice to the CHC community. They relate their own heroic experiences as they sought an understanding of how their diagnosis influenced their ability to live a full life. We learn from their pioneering journey of self-exploration that, even with limited information from the medical community, they sought to understand their feelings and even metabolic resources. The story is optimistic as we learn that with appropriate medical care and a supportive community, individuals with CHC can live full lives, successfully have families, and navigate being a successful professional." -- Professor Stephen Porges, Distinguished University Scientist, Indiana University and Founding Director, Traumatic Stress Research Consortium, Kinsey Institute

"This is the book for which we've all been waiting. With warmth, respect, and compassion from two highly regarded authors with lived experiences as well as professional training and expertise, Morton and Livecchi offer an incredible how-to guide for adults everywhere coping with congenital heart conditions. I highly recommend this book for everyone in the congenital heart community-patients, families, and health care professionals." -- Dr. Adrienne Kovacs, Clinical and Health Psychologist, Equilibria Psychological Health, Toronto, Canada

"Tracy Livecchi and Dr. Liza Morton have harnessed their individualized training and experiences both as mental health professionals as well as adults living with congenital heart conditions (CHCs) to create a first-of-its-kind, easily readable, focused, informative, and entertaining primer and guide to awareness of, and release from, the global suffering that commonly occurs in the setting of a lifelong medical condition. We are grateful to Liza and Tracy for their wisdom in calling this out loud, filling a void for the benefit of our patients, their families, and for our colleagues." -- Founding Director Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Program, Laurence J. Sloss, MD Chair in Cardiology, Associate Professor of Medicine, Harvard Medical School, and Dorothy Pearson, Vice President Global Alliance of Rheumatic and Congenital Hearts, and Former Senior Physician's Assistant, Boston Adult Congenital Heart Disease Center (BACH)

"This carefully written and touching book takes a novel approach to CHCs. Written for a lay perspective, underpinned by psychotherapy expertise, the reader is guided through their own journey to explore emotional and mental health. The positive effects of storytelling on mental health are recognized and this approach is excellently weaved throughout the book using the authors' own stories and those of other adults with CHC, families and professionals. Whilst aimed predominantly at supporting those living with CHC and their families/friends, it provides insight and recommendations that all CHC healthcare professionals should be encouraged to read. I loved reading it and will be referring to it again and again." -- Dr. Kerry Gaskin, Associate Professor of Nursing, University of Worcester and Chairperson of the Congenital Cardiac Nurses Association (CCNA), United Kingdom

"Written with kindness and a sense of community this book offers gentle encouragement for people living with CHCs validating their experience in a world, and body, which may have presented many challenges. The background details how medical advances have increased survival for people with CHC. The authors explain, with great care, the personal and societal challenges of life as 'pioneering patients'. Their expert knowledge is evident, in their lived experience and psychological expertise. They explain the psychological impacts and evidence based coping mechanisms. Diversity of experience is thoughtfully weaved throughout. This book will be an important resource for people living with CHC, their families or anyone working in the healthcare system wanting to take a more psychologically informed approach to care." -- Kylie Barclay, Health Policy Professional, United Kingdom

"A beautifully crafted journey through stories of adversity, medical procedures and cardiac events framed by stories of love, perseverance and hope. The authors draw on their lived experience of living well with a congenital heart condition and mental health training to discuss the psychological impact of growing up with a lifelong condition. It has important insights and evidence-based strategies for people living with a CHC and those who support them. As we become more aware of the need for psychologically informed care and how a child's experiences of medical care shape life, this book is a must read for those interested in a more trauma informed approach. 'Healing Hearts and Minds' is a wonderful achievement" -- Professor Lucy Bray, Professor of Child Health Literacy, Edge Hill University and lead ISupport Collaboration

"Informative and thought-provoking. 'Patient voice' and 'lived experience' are buzzwords we often hear, yet this can be a tick-box exercise. This book gently but firmly challenges the simple notion people are 'fixed' when they leave hospital. This is not to deny the incredible developments in medical science rather, it's an acknowledgment that we need to support the whole person lifelong. Liza and Tracy have given voice to their experiences and, in doing so, will help to give voice to many others. Their writing offers a priceless combination of truly lived experience and professional expertise, representing a textbook for us all. For those affected by CHCs, clinicians and policymakers committed to providing truly holistic care." -- Dr. James Cant, CEO, Resuscitation Council, United Kingdom

"Liza and Tracy have produced a toolkit for people living with a CHC, their loved ones and health professionals. Their insights gained through lived experience and professional roles have allowed them to develop a book with a unique perspective. As a healthcare professional this helped me consider how I can better support and meet the needs of people with a CHC, taking a truly holistic approach to their care. Thanks to the authors for their dedication in providing the first toolkit to support the mental health of others with a CHC, for showing them a path already traveled and how to navigate it. I encourage HCPs involved in the care of people with CHC to read this book to support their development." -- Maggie Simpson, ACHD Specialist Nurse, Chair British Adult Congenital Cardiac Nursing Association (BCCNA) & Scottish Heart Failure Nurse Forum (SHFNF)

"This book is a unique contribution to the world of congenital heart conditions (CHC)-serving both patients and families as well as the clinical care team. Tracy Livecchi and Dr. Liza Morton take the reader on a journey to explore psychological challenges, hopes, and disappointments into the new "normalcy" of CHC patients. The book is motivating, inspiring, and helpful. For congenital heart condition patients and providers this book is a must." -- Dr. Dan G. Halpern, MD, Director, Adult Congenital Heart Disease Program, Associate Professor of Medicine, NYU Grossman School of Medicine and NYU Langone Health

"As an adult patient with a congenital heart condition (CHC), I have read many books on the topic. This book, however, provided insights and help beyond so many of the others because both of the authors have CHCs and have personally faced the same challenges that I have. I knew they 'got me.' The unique combination of being patients and healthcare professionals provides the authenticity, credibility, and help that simply cannot be achieved in any other way. What I found most beneficial (and healing) about this book is that the authors recognize the differences between adults who were born in the 50s, 60s, 70s, and today―and that these differences can be addressed. The authors' insights and desire (and ability) to help clearly come from the heart. Thank you!" -- Rick Puder, CHC lived experience and advocate, United States

"This book is a wonderful resource that is greatly needed in the CHC patient and family community. I know it would have helped me at a time in my adult life when I had one medical crisis on top of another. At that time, I reached out for therapy but could not find a therapist who 'got' me. I felt so alone and unheard." -- Paula Miller, Senior Education Manager, ACHD (Adult Congenital Heart Association), United States

"Congenital heart disease (CHD) is a physical condition where the heart has developed abnormalities prior to birth. The amazing success in survival is due to the medical advances in making corrections or adjustments to the physical condition. Particularly in adults, while there are physical symptoms, the effect on their lives tends to be much greater from psychological symptoms. These psychological symptoms are very dependent on the individual, what their lives consist of, and how they can cope with them. The future advances in how to live as full and meaningful life as possible, will be the management of coping well and this book fills a significant gap by offering extensive support, strategies, and techniques to this end." -- Michael Cumper, President of Somerville Heart Foundation, United Kingdom / CHC Lived Experience

"A psychologically illuminating book focused on congenital heart conditions, life-extending recent advances in medicine and surgery, and the associated health and psychological experiences faced by many. The authors write with an uplifting and inspiring sense of courage, optimism, love, and sensitivity, sharing a rich treasure trove of professional psychological knowledge and lived experience. A wonderful, much needed specialist psychology resource to support health and well-being for the congenital heart family around the world." -- Dr. Anne-Marie Doyle BSc MSc MA DClinPy Consultant Clinical Psychologist, Adult Congenital Heart Service, Royal Brompton Hospital, London

"A book full of compassion and hard-won insight, wisdom, and practical strategies for healing, I sincerely hope this book becomes the classic it deserves to be. While it may focus on CHC, there are many other planets of chronic disease that could readily be brought into its orbits of enlightened understanding and gifts of tender self-care." -- Brian Dolan OBE, FFNMRCSI, FRSA, RMN, RGN, Founder of #endpjparalysis global movement, Director, Health Service 360, Honorary Professor of Leadership in Healthcare, University of Salford

"I guess it took two women who were born with CHCs and who went into the mental health field for us to finally get a book discussing issues affecting CHC families in a gestalt manner. Now we can move beyond mere survival to having all members of the CHC community living our best lives. This book addresses these issues and gives coping strategies that are helpful not only for the patients but also for the family members. Thank you for validating the feelings I've been having for over two decades! I loved the quotes from members of the CHC community and the case studies. It made the book more digestible and relatable." -- Anna Jaworski, Owner and founder, Baby Hearts Press, Host, Heart to Heart with Anna, CEO of Hearts Unite The Globe, Parent of a son with CHC

"Tracy Livecchi and Dr Morton have created an essential road map to guide congenital heart survivors as they negotiate the life-long challenges of their condition. Compassionate, and wise, it offers the kind of advice that is deeply informed by their own CHD journey, as well as by their many years caring for the mental health needs of their community. Most impressive is their focus on wellness, which they argue can be achieved even in the face of severe health challenges. The authors offer concrete steps that every patient can take to embrace their lives with their own unique heart." -- Amy Verstappen, President, Global Alliance for Rheumatic and Congenital Hearts, CHC lived experience

"The complexities of mental health issues among patients with congenital heart disease (CHD) are unlike any other. Tracy and Liza are not only well-respected therapists in our community, but as CHD patients, they have thoughtfully conveyed our challenges first-hand. This comprehensive resource for patients, their loved ones, and medical providers is a very informative read!" -- Lena Morsch, Founder of Zipper Sisters: Women with Congenital Heart Disease, CHC Lived Experience, United States

"This well-written book provides a window into the internal struggles and conversations a congenital heart disease patient may experience, including feelings and emotions they may be unable to express to friends and family. This book will give patients solace that they are not alone in what they feel....this easy-to-read book will be useful for patients, families, friends, and even for the professionals that care for them. The final chapter has specific sections for loved ones, healthcare professionals, and mental health professionals. This book provides crucial information for congenital heart disease patients and their families in a practical, no-nonsense manner. Essential. General readers through faculty; professionals." -- Choice

About the Author

Tracy Livecchi, LCSW, is a Clinical Social Worker in Private Practice and is the Mental Health Consultant to the Adult Congenital Heart Association's Peer Mentorship Program. Tracy was born with a complicated CHC which has made it necessary for her to have several surgeries and hospitalizations throughout her life. She feels fortunate to be able to combine her lived experience with a meaningful profession that she loves. She is passionate about improving access to mental health care for all, with a special focus on individuals living with serious and chronic illness. Tracy lives in Connecticut with her husband and two daughters.

Liza Morton, PhD, C.Psychol, is a Chartered and Registered Counseling Psychologist practicing in Scotland, UK. She is also a part time Lecturer in Applied Psychology at Glasgow Caledonian University. As a health advocate for over ten years, Liza voluntarily sits on the management board of The Somerville Heart Foundation in the UK successfully campaigning for Scottish CHD healthcare standards and improved psychological support. Born with complete heart block and a hole in her heart, in a world first at the time, Liza was fitted with her first cardiac pacemaker at just 11 days old in 1978. She has depended on pioneering medical treatment since facing countless cardiac surgeries, treatments, and hospitalizations. She is passionate about promoting what she terms Psychologically Informed Medicine to improve well-being and recovery for people living with lifelong medical conditions. This approach is grounded in her clinical work, research and advocacy and she publishes and presents widely. Liza lives with her husband Craig, their sixteen year old son Dylan and Scottish Terrier wee Lass.

Product details

  • Publisher ‏ : ‎ Oxford University Press (January 13, 2023)
  • Language ‏ : ‎ English
  • Paperback ‏ : ‎ 304 pages
  • ISBN-10 ‏ : ‎ 0197657281
  • ISBN-13 ‏ : ‎ 978-0197657287
  • Item Weight ‏ : ‎ 14.4 ounces
  • Dimensions ‏ : ‎ 9.31 x 0.79 x 6.16 inches
  • Customer Reviews:
    4.8 out of 5 stars 26 ratings

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Top reviews from the United States

  • Michael Putnam
    5.0 out of 5 stars Healing Hearts and Minds conveys a tremendous 360 degree perspective on living with CHD!
    Reviewed in the United States on February 13, 2023
    Verified Purchase
    Healing Hearts and Minds by Tracy Livecchi, LCSW and Liza Morton, PhD is a treasure for those of us in the Congenital Heart Disease (CHD) community and their families! It is masterfully written from their holistic perspectives of living with CHD as well as incorporating experiences from many other individuals in our community. Growing up with CHD in the 1960’s and ‘70’s and living in an environment where the entire focus was on physical healing. the mental health aspects of my journey were highly discounted or dismissed. I am truly enlightened by how the authors recognized and balanced these two equally important aspects of CHD health and I gained validation for much of what I’ve been feeling for so long. I feel I now have access to many new tools to support my CHD journey. I highly recommend this book. Well done Tracy and Liza!

    Michael E. Putnam
    Author, My Cardiac Trailblazers: Challenges and Blessings of My Journey with Congenital Heart Disease
    One person found this helpful
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  • T James
    5.0 out of 5 stars Great book for family as well as CHD community
    Reviewed in the United States on November 15, 2023
    Verified Purchase
    Wonderful book for not only CHD patients, but also their family members. The authors give great insight of CHD patient’s internal struggles that family may not even be aware of. Family can learn how to better support and understand the psychological effects of living with CHD. The authors personal stories and experiences along with their professional expertise make for an amazing and easy to read book.
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  • FD
    5.0 out of 5 stars Great content
    Reviewed in the United States on August 5, 2023
    Verified Purchase
    This book is written by experts who have lived what they are talking about, not just theoretical . The mental part of the illness is as important, if not more important that the actual illness. They authors speak about this in depth.
    One person found this helpful
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  • Meredith
    5.0 out of 5 stars So helpful for ACHD Providers!
    Reviewed in the United States on May 19, 2023
    As a social worker within an Adult Congenital Heart Disease center, I could not have asked for a more informative book. "Healing Hearts and Minds" distills complex topics and provides easy to follow and easy to share evidenced-based coping skills for patients with CHD. This book, the resources, skills, and the personal stories shared, has made me a stronger clinician in this field. I encourage my colleagues in the CHD community as well as those with CHD to read this book. - Meredith K, LCSW
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Top reviews from other countries

  • Amazon Customer
    5.0 out of 5 stars What a great resource!
    Reviewed in Canada on October 25, 2024
    Verified Purchase
    I have been living with Congenital Heart disease for 46 years and this book is helping me to finally process what I have gone through. I highly recommend.
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  • Mike O
    5.0 out of 5 stars For everyone living with Congenital Heart Conditions
    Reviewed in the United Kingdom on February 14, 2023
    Verified Purchase
    It feels very apt that I should finish reading this book today, the 14th of February, better known as World Congenital Heart Defect/Condition (CHD or CHC) Day.

    The book is amazing and what the CHD community has been waiting to read.

    The book is written by 2 CHD patients, who not only "get it" but, through their professional expertise in psychological support, bring authority to their words, recommendations and discoveries.

    For me, the book posed questions that I didn't even know needed asking, let alone answering. It highlighted how my life had been influenced by traits I'd acquired from birth and how those imposed complexities led to difficulties that I wasn't aware of before reading this book.

    On the 5th of August 2017, a month after my mental illness had been diagnosed, I wrote that I thought I was at the "end of the beginning" of my challenges.

    In December 2022, 5.5 years later, I looked back to the day I was born and started to recognise the life long traits. I now view this moment as the "beginning of the end".

    Reading this book has put everything into place and resolved so much for me. I spent most of my time nodding my head in agreement as the words rang true with my journey.

    It confirmed everything I'd been through and affirmed all the steps I'd taken. It brought a realisation that I've reached the "end of the end" to my struggles and I feel lighter, at peace, happy and ready for the future.
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  • Amazon Customer
    5.0 out of 5 stars A must have
    Reviewed in the United Kingdom on May 19, 2023
    Verified Purchase
    This book is a compendium of insights, psychological skills and knowledge for patients and professionals. CHD is a real physical condition, and living with such a condition invites in many challenges. I hope it shifts people from just being grateful to be alive, to owning their right to have a good quality of life, even in the presence of CHD. This book is clear and easy to read and understand. Packed with evidence, personal experience and key psychological tools for learning to live well and evidence based strategies for enhanced coping when challenges arise. My opinion is that it holds both the patients experience and the professionals guidance in an extraordinarily well balanced way. The authors write in a style that is very personable, engaging and honest. A great core text for the specialty.
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  • Amazon Customer
    5.0 out of 5 stars A unique and compassionate book.
    Reviewed in the United Kingdom on January 15, 2024
    Verified Purchase
    I came to this remarkable book with an interest in, but very little knowledge of, the subject matter and, as far as I know, no heart conditions. In addition to gaining an appreciation of the many and varied impacts of Congenital Heart Disease I now have a reference point to access coping strategies applicable to everyday life.
    (Adrian Smith)
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  • Elizabeth Taylor
    5.0 out of 5 stars Excellent resource for both those living with CHD and Health Care workers
    Reviewed in the United Kingdom on April 25, 2023
    Verified Purchase
    This is an excellent book and written in a way that is easy to read. As a health care professional, this has really helped my understanding of the psychological impacts of CHD and will help to inform my practice going forward.
    Report