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Living with Liver Transplantation Canadian Cataloguing in Publication Data Main Entry Under Title: Living with Liver Transplantation Includes Index

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Living with Liver Transplantation Canadian Cataloguing in Publication Data Main Entry Under Title: Living with Liver Transplantation Includes Index Living with Liver Transplantation Canadian Cataloguing in Publication Data Main entry under title: Living with liver transplantation Includes index. 1. Liver--Transplantation 2. Liver--Transplantation--Patients--Care. I. British Columbia Transplant Society. RD546.L48 1995 617.5’560592 C95-911011-9 Copyright © British Columbia Transplant Society, 1996 No part of this manual may be reproduced without the written permission of the Director (or designate) of the British Columbia Transplant Society. 2 Living with Liver Transplantation Acknowledgments I would like to thank all of the health care professionals of the various transplant teams who participated in the development of this manual. Their time, patience, and guidance was appreciated. I would like to extend a very special thank you to the manual committee members from the Vancouver Hospital and Health Sciences Centre, St. Paul’s Hospital, and BC Transplant Society for their involvement in the monumental task of writing multi-organ manuals. Without their commitment of time, sharing of expertise, and genuine concern for providing the best possible patient education material, this manual would not be possible. I would also like to thank the Kidney Foundation of Canada for permission to use some of the graphics in this manual. Yours Sincerely, Sue Howard Clinical Coordinator British Columbia Transplant Society Manual Committee Chairperson Living with Liver Transplantation 3 Table of Contents Introduction Chapter 1: Transplantation History of Transplantation ............................................................7-8 How Your Liver Works ......................................................................8 How Cirrhosis of the Liver Affects Your Health .........................8-10 When to seek immediate medical help ...........................................10 British Columbia Transplant Society .............................................10 Your Transplant Team ...............................................................10-11 Overview of Transplant Phases .................................................12-13 Pre-transplant Assessment ......................................................12 Waiting for a Transplant ..........................................................12 Receiving a Transplant .............................................................13 Recovery on the Transplant Unit ............................................13 Living with a Transplant ..........................................................13 Chapter 2: The Gift for Life Organ Donors ................................................................................... 14 How are Organs Allocated? .............................................................15 Thanking the Donor’s Family .........................................................15 Donor Memorial Service ..................................................................15 Chapter 3: Waiting for Your Organ Waiting List .....................................................................................16 Stress During the Waiting Period ..............................................16-17 Emotional and Physical Symptoms of Stress .................................18 Dealing with Stress ..............................................................18-19 Support Group ..........................................................................20 Monitoring Your Health ..................................................................20 Preparing for the Call ......................................................................21 Your Pager .................................................................................21 Checklist: Getting Ready for the Call ......................................22 Chapter 4: Receiving the Call Travelling to the Hospital ...............................................................23 Preparation for Surgery ..................................................................24 Chapter 5: Your Transplant Surgery .............................................................................................25 After the Operation .........................................................................25 Tubes and Lines ........................................................................26 Recovery ....................................................................................26 Visitors .......................................................................................27 Transfer to Transplant Unit ....................................................27 4 Living with Liver Transplantation Chapter 6: The Road to Recovery Recovery on the Transplant Unit ...................................................28 Physical Exercise .................................................................28-29 Breathing Exercises ..................................................................29 Diet ............................................................................................29 Length of Stay ...........................................................................29 Emotional Support ....................................................................30 Support Group ..........................................................................30 Rejection Episodes ...........................................................................30 Signs of Rejection ......................................................................31 Biopsies ......................................................................................31 Treatment of Rejection .............................................................31 Chronic Rejection ......................................................................32 Anti-rejection Drugs ........................................................................32 Cyclosporine or Neoral .............................................................33 Tacrolimus .................................................................................34 Azathioprine ..............................................................................35 Mycophenolate Mofetil .............................................................36 Prednisone .......................................................................................37 Taking Anti-rejection Drugs ...........................................................38 Infection ...........................................................................................38 Preventing Infection .................................................................39 Signs of Infection ......................................................................40 Treatment of Infection .............................................................40 Biliary Complications ...............................................................40 Cancer ..............................................................................................40 Becoming Self-reliant ......................................................................41 Monitoring Your Own Health...................................................41 Taking Your Own Medications .................................................41 Preparing for Discharge ...........................................................41 Chapter 7: Adjusting to Your New Life Monitoring Your Health ..................................................................42 Weight ........................................................................................42 Temperature ..............................................................................43 Transplant Clinic Visits ..................................................................43 Medication and Other Costs ...........................................................44 Routine Health Care ..................................................................44-45 Guidelines for Healthy Living ........................................................46 Exercise ............................................................................................46 Driving .............................................................................................47 Travelling ....................................................................................47-48 Sexual Activity .................................................................................48 Pregnancy ..................................................................................48 Community Resources .....................................................................49 When to Call the Transplant Team ................................................49 Glossary .........................................................................................................50-53 Living with Liver Transplantation 5 Introduction To the transplant recipients and their families: Each of you plays a role and has a responsibility in the recovery process. The best way that you can accomplish this is to have a full understanding of transplantation. This manual is written to help you understand the process involved, and your responsibilities within this process. It is our hope that this manual will answer some questions, and be the catalyst for others. Questions you have should be written down and directed to one of the members of your transplant team. “Nothing in life is to be feared. It is only to be understood.” —Marie Currie 6 Living with Liver Transplantation Transplantation Learning that you have a serious illness is never easy, but dealing with the situation can be more challenging.
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