ICD Connection: Living with an Implantable Cardioverter Defibrillator. A Collection of Patient & Family Stories

Helen McFarland, RN
Device Clinic Nurse
University of Michigan Health System
Cardiovascular Center
Ann Arbor, Michigan

Helen McFarland, RN
Device Clinic Nurse
University of Michigan Health System
Cardiovascular Center
Ann Arbor, Michigan

ICD Connection: Living with an Implantable Cardioverter Defibrillator is a newly published book featuring ten personal stories in which seven ICD recipients and three family members (husband, father, and daughter) write about their unique journey of living life with an ICD, cardiac arrhythmia, and for some, surviving sudden cardiac arrest.

The inspiration for this book evolved from the University of Michigan’s Young ICD Connection Conference, which is an annual conference that offers ICD recipients and their family and friends the opportunity to connect with others who are living with an ICD and adjusting to similar experiences. The Young ICD Connection Conference is a multidisciplinary collaboration and is coordinated and hosted by the University of Michigan Cardiovascular Center and Congenital Heart Center. This conference, established in 1995, provides support, education, and social interaction for ICD recipients of all ages and their family and friends.

The conference opens each year with a general session in which an invited group of ICD recipients and family members individually share their personal story of living with an ICD. These guest speakers’ personal stories reflect how ICD implantation affected their lives and offer support, inspiration, and hope to others facing similar challenges. Each year, survey results from the attendees reflect overwhelming positive feedback about this session. The idea for the book was proposed to the attendees of the 15th Young ICD Connection Conference in 2011. Few educational resources for ICD recipients were available that offered a diverse collection of personal accounts of ICD implantation, ICD shock(s), cardiac arrhythmia, and survival of sudden cardiac arrest from the patient and family perspective. This idea received tremendous support from the ICD recipients and families who attended this particular conference. Soon afterward, ten ICD recipients and family members agreed to write about their personal journeys. The ICD recipients’ ages at the time of publication range from 13 to middle adulthood. The diagnoses of the recipients are also very diverse.

These ten stories, written in each author’s own words, detail their personal experience which led to ICD implantation or supporting a loved one with an ICD. The authors of the stories offer advice and encouragement to others on healing, coping, and living with an ICD. Many of the authors experienced anxiety and depression after ICD implantation, and convey in their personal stories about what helped and did not help with these difficulties. Upon offering to write and share their stories for the book, each author expressed that they wanted to help others who are dealing with similar experiences.

The foreword for the book is written by Frank Pelosi, Jr., MD, Director of Cardiac Electrophysiology Fellowship at the University of Michigan. Dr. Pelosi begins the foreword with the following: “If you are reading this book, your life or the life of someone you know has likely changed or is about to change. The stories you will read are about change. These lives have changed with a heartbeat — something we take for granted every second of every day. These stories are about a group of courageous individuals who have received a remarkable technology called an implantable cardioverter defibrillator or ICD. These are stories of suffering, grace, renewal and wisdom.”

Lauren D. Vazquez, PhD, clinical health psychologist, contributed the chapter, “Psychosocial Factors Related to Living with an Implantable Cardioverter Defibrillator and Proposed Strategies for Success.” Dr. Vazquez’s chapter addresses anxiety, depression, and other difficulties that may accompany ICD implantation. Dr. Vazquez offers a plan outlining specific strategies for help in adjusting to living with ICD implantation, and shares online resources available for concerns of ICD shock, recalls, and sexual health.

The book also includes general information about ICDs in the chapter, “Frequently Asked Questions about ICDs” by Laura Horwood, NP. A list of resources is provided in the back of the book, directing the reader to further information, education, and support resources available from a variety of organizations, including the Heart Rhythm Society.

Resources available through the University of Michigan made the publication of the book possible. The book was a collaborative effort between the book’s authors and staff from the University of Michigan Health System, University of Michigan Medical School, MPublishing, and University of Michigan Library.

The book made its debut at the 16th Young ICD Connection Conference on September 29, 2012. It was announced in the morning session with acknowledgement of the ICD recipients and family authors, who each received a copy of the first books printed. During the afternoon, an author book signing was available. The conference attendees received copies and were able to have them signed by the authors. The book was well received by the attendees, with very positive feedback.

The University of Michigan Health System plans to use the book as an educational and support resource for ICD recipients and families. Healthcare providers will also find the book insightful and valuable in understanding the patient and family perspective, as it is written in the ICD recipient/family voice. The book is also available on Amazon.com.

Nurses from the University of Michigan Device Clinic are looking for nurses, nurse practitioners, or physician assistants specializing in ICD follow-up who would be interested in reviewing a copy of the book. If you would be interested in reviewing the book and completing a short online survey, please contact through e-mail: hmcfarla@umich.edu

To see another article in the November 2012 issue of EP Lab Digest®, please visit: http://eplabdigest.com/articles/Keeping-Medical-Language-Patient-Centric