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Adult Heart Transplant Handbook

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Adult Heart Transplant Handbook THE ADULT HEART TRANSPLANT HANDBOOK A REFERENCE GUIDE FOR HEART TRANSPLANT RECIPIENTS, THEIR FAMILIES, AND CAREGIVERS. This reference guide belongs to: Patient Name: Transplant Date: HEART TRANSPLANT PROGRAM Cedars-Sinai Medical Center Advanced Health Sciences Pavilion 127 S. San Vicente Blvd., Suite A6100 Los Angeles, CA 90048 USA Tel: (310) 423-5460 Fax: (310) 423-0852 www.cedars-sinai.edu/heart In the event this handbook is lost and found, please be advised: The information contained herein is considered Protected Health Information (PHI) and is protected under applicable law. This personal identifiable health information is private, confidential, and privileged. Any review, dissemination, distribution, or disclosure in any manner whatsoever is strictly prohibited and violations committed thereon are prosecuted. Upon immediate determination that handbook has been lost, please secure its safety and call the Heart Transplant Program at (310) 423-5460 and arrange for its return at the expense of the hospital. Thank you for your cooperation. Foreward 5 PREFACE This handbook is designed to provide a better understanding of the heart transplant program, the associated postoperative recovery, and the lifetime follow-up care required of all heart transplant recipients. Please consult with a transplant nurse coordinator, transplant cardiologist, or other appropriate clinician to assist you in finding answers to the questions you could not find in this handbook. Contents 7 TABLE OF CONTENTS PREFACE .......................................................................................... 5 TABLE OF CONTENTS ..................................................................... 7 WELCOME ...................................................................................... 11 HEART TRANSPLANT FACULTY & STAFF ................................... 13 Transplant Cardiologists .............................................................13 Transplant Surgeons ...................................................................14 Transplant Psychiatry ................................................................. 14 Nurse Transplant Coordinators ................................................... 14 Transplant & Heart Failure Nurse Practitioners ........................... 15 Transplant Social Workers ........................................................ 166 Transplant Financial Coordinators .............................................. 16 Transplant Clinical Pharmacology ............................................... 16 Transplant Nutrition and Dietetics ............................................... 17 Patient Service Representatives ................................................. 17 Transplant Clinic Nurses .............................................................17 Administrators .............................................................................1 8 Advanced Heart Disease Center – P a tie nt Clinic ........................ 18 Answering Service ......................................................................1 8 HEART TRANSPLANTATION AT CEDARS-SINAI ........................ 19 TRANSPLANT EVALUATION ........................................................ 21 Laboratory Tests .........................................................................21 Diagnostic Tests .........................................................................22 Me dica l & S urgica l Eva lua tion ............................................... 22 Psychosocial Evaluation ........................................................ 23 Psychiatric Evaluation ........................................................... 23 Dental Evaluation ..................................................................23 Nutrition Evaluation ...............................................................23 Fina ncia l Eva lua tion ..............................................................24 Decision Making Process ............................................................25 GENERAL SURGICAL RISKS .......................................................... 27 EARLY PROBLEMS OF TRANSPLANT .......................................... 29 Re na l Fa ilure .........................................................................29 Rejection ...............................................................................29 Acute Rejection .....................................................................29 Chronic Rejection ..................................................................29 CONSIDERATIONS ........................................................................ 31 Alternative Treatments .......................................................... 31 Protected Health Information ................................................. 31 Potential Medical/Psychosocial Risks .................................... 31 National Results and Transplant Center-Specific Outcomes . 31 Medicare Notification and Outcome Requirements ................ 31 Health and Life Insurance ..................................................... 32 Contents 8 Right to Refuse Transplant .................................................... 32 Te a ching Fa cility ...................................................................32 Waiting Time Transfer and Multiple Listing ............................ 32 Concerns or Grievances ........................................................ 32 Program Coverage ................................................................33 WA I TI NG FOR A HEART ................................................................ 35 National Waiting List ...................................................................35 Waiting List Status ................................................................35 Multiple Lis ting Option ...........................................................36 Waiting period .......................................................................36 Wa iting Time .........................................................................36 Listed Patient Responsibilities..................................................... 37 Insurance Approval and Insurance Changes ............................... 37 Organ Donors .............................................................................37 High Risk Donors ..................................................................38 Donor Privacy .......................................................................39 The Matching Process...........................................................39 HEART TRANSPLANT EVENT ....................................................... 41 Orga n Offe r ...........................................................................41 Organ Donor Related Risks .................................................. 41 Transplant Notification...........................................................41 ANATOMY OF THE HEART ........................................................... 43 HEART TRANSPLANT SURGERY .................................................. 45 ICU Nurs ing S ta ff ..................................................................46 ICU Expectations ..................................................................46 Length of Stay .......................................................................47 CLINIC AND YEARLY VISITS ......................................................... 49 Diagnostic Invasive Procedures .................................................. 49 Right Heart Catheterization (RHC) and Endomyocardial Biopsy 49 Left Heart Catheterization (LHC) or Angiogram ..................... 50 Intravascular Ultrasound (IVUS) ............................................ 51 Diagnostic Non-Invasive Procedures & Testing .......................... 51 Echocardiogram (Echo) .........................................................52 Electrocardiogram (EKG) ...................................................... 52 Blood Work ...........................................................................52 MEDICATIONS ............................................................................... 53 Anti-Rejection Medication (Immunosuppression) ........................ 53 Neoral® or Gengraf® (Cyclosporine) .................................... 53 Prograf® (Tacrolimus) ........................................................... 54 CellCept® (Mycophenolate Mofetil) ....................................... 54 Rapamune ® (Sirolimus) ....................................................... 55 Zortress® (Everolimus) .........................................................55 Prednisone ............................................................................55 Infe ction-Fighting Medications..................................................... 56 Bactrim SS® (Trimethoprim/Sulfamethoxazole) .................... 56 Contents 9 Valcyte® (Valganciclovir) ...................................................... 56 Clotrimazole® .......................................................................57 Over-the-Counter Medications .................................................... 57 Constipation ..........................................................................57 Diarrhea ................................................................................57 Headaches, Muscle Aches, and Pain .................................... 57 Allergy/Cold Symptoms .........................................................57 Indigestion/Heartburn ............................................................58 S le e p Aids .............................................................................58
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