Healing Hearts and Minds

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 *