BRING THIS BOOK TO EVERY APPOINTMENT
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1 BRING THIS BOOK TO EVERY APPOINTMENT PATIENT/FAMILY EDUCATION GUIDE This University of Michigan Health System patient education guide for pediatric heart transplant patients does not provide specific medical advice and does not endorse any medical or professional service obtained through information provided within this guide. Use of this guide does not replace medical consultation with a qualified health or medical professional to meet the health and medical needs of you or others. While the content of this guide is frequently updated, medical information changes rapidly and therefore, some information may be out of date, and/or contain inaccuracies or typographical errors. UNIVERSITY OF MICHIGAN CONGENITAL HEART CENTER PEDIATRIC HEART TRANSPLANT PROGRAM 6/13
2 Welcome To Our Patients and Their Families: As you and your family prepare to undergo heart transplantation, the staff of the Pediatric Heart Transplant Team would like you to know that we are dedicated to providing quality care. We are committed to the health care team philosophy and consider all of you to be important members of that team. Your job is to work with the Heart Transplant Team to ensure that the candidate has a healthy, active life before and after the transplant operation. Once you arrive at the Medical Center, you will meet many health care professionals who will be offering their expertise regarding the physical and emotional needs of the candidate throughout the transplant process. As you read the enclosed materials you will learn about the various team members and their specific roles, as well as some of the medical aspects of the candidate s stay. As you will learn, all of you are important and active participants in making the heart transplant a success. If at any time you have questions or concerns regarding the upcoming transplant, please do not hesitate to contact our office. We look forward to working together as a team in caring for the candidate at the Michigan Congenital Heart Center. Sincerely, Your Pediatric Heart Transplant Team University of Michigan Congenital Heart Center C.S. Mott Children s Hospital
3 PEDIATRIC HEART TRANSPLANT PROGRAM WHAT S INSIDE Your Transplant Team Transplant Team Who s Who...1 Transplant Team Information and Phone Numbers...5 Healthcare Team Working With Your Family...7 Evaluation When is a Heart Transplanted?...1 Medical Evaluation...2 Psychosocial Evaluation...3 Financial and Residential Considerations...4 What s Next...5 Listing Process...1 Financial and Additional Information Insurance...1 Travel and Parking...3 Lodging...4 Other Information...6
4 Post-Transplant The Operation...1 Pediatric Cardiothoracic Intensive Care Unit (PCTU)...2 What to Expect West...4 Discomfort...5 Discharge/Going Home...5 Medicines...1 Routine Lab Studies...1 Complications and Long-Term Care Rejection...1 Long-Term Complications...1 Recognizing Infection...2 Hygiene...4 Physical Activity...4 Home Environment...5 Follow-up Visits...5 Immunizations...6 School...8 Pets...8 Drugs, Alcohol or Tobacco Products...9 Medic-Alert Identification...9 Diet and Nutrition...1 Transition to Adult Care...1
5 Resources and Glossary Questions...1 Becoming an Organ Donor...2 Raising Funds to Cover Medical Expenses...3 Transplant-Related Websites...4 MLabs...5 Transplant Specialty Pharmacy Services...7 Glossary of Terms...9 Donor Family...21 Durable Power of Attorney for Health Care...25 Temporary Consent Medical Treatment...31 This Pediatric Heart Transplant Patient Education Guide was developed by the University of Michigan Transplant Center and Congenital Heart Center s Pediatric Heart Transplant Program members: Stacy Brand, MBA Regine Caruthers, PharmD Bethany Lechtanski, RN, BSN Nicole Mammo, LMSW Megan Rose, RD Barb Shaltis, LMSW Christina Tikkanen, LMSW Donna Wilkin Heather Young, MA Mary (Meg) Zamberlan, CPNP The Pediatric Heart Transplant Team would like to thank all of our past and present patients and their families for their contributions to this book.
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