Pediatric Heart Transplantation:
A Practical Parent Guide

Heart Transplantation Team, Children's Hospital Boston

TABLE OF CONTENTS

PART 1: PROGRAM STAFF

• Children's Hospital Boston Heart Transplant Team
• Heart Transplant Program Contact Numbers

PART 2: OVERVIEW

PART 3: EVALUATION PRIOR TO TRANSPLANTATION

• Heart Failure
• Tests of Heart Function
• Tests of Other Body Systems
• Consultations

PART 4: LISTING AND WAITING FOR TRANSPLANTATION

• When the Evaluation is Complete
• Listing for Transplantation

PART 5: THE HEART TRANSPLANTATION

• The Operation
• After the Operation
• Preparing for Discharge
• Discharge Follow-Up

PART 6: POST TRANSPLANT MEDICATIONS

• Induction Medications
• Maintenance Immunosuppressive Drugs
• Anti-Rejection Immunosuppressive Drugs
• Other Common Medications

PART 7: MEDICAL ISSUES AFTER TRANSPLANTATION

• Rejection
• Infection
• Post Transplant Lymphoproliferative Disease (PTLD)
• Coronary Artery Disease

PART 8: FOLLOW-UP CARE AT HOME

• Medication Management Tips
• Infection Precautions
• Immunizations
• Nutrition
• Physical Activity
• Growth and Development
• Exposure to Sun
• Pets
• Travel
• When to Call the Heart Transplant Team

PART 9 : COMING BACK TO THE HOSPITAL

• Clinic Visits
• Annual Studies
• Common Tests and Studies

PART 10: RESOURCES AND INFORMATION

PART 11: TIME TABLE: HEART FAILURE/TRANSPLANT