Pediatric Liver Transplantation Information for Healthcare Professionals

1. The Function Of The Liver

2. The Dysfunction Of The Liver

             Types Of Liver Disease

                   Biliary Atresia
                   Alagille’s Syndrome
                   Alpha-1-Antitrypsin Deficiency
                   Chronic Active Hepatitis
                   Acute Viral Hepatitis
                   Autoimmune Hepatitis
                   Fulminant Hepatitis and Toxic Liver Failure
                   Tyrosinemia
                   Glycogen Storage Diseases
                   Congenital Hepatic Fibrosis
                   Prolonged Familial Intrahepatic Cholestasis
                   Wilson’s Disease
                   Hepatoblastoma

3. Medical Management

             Nutrition
             Treatment Of Pre-Transplant Conditions
             Lab work/Testing
                  Liver Function Tests
                  Laboratory Tests and Values
             Pediatric Transplant Parent Support

4. Finances

             Insurance
             Financial Assistance
                  Maryland Medical Assistance/Medicaid (MA)
                  Out-Of-State Medicaid
                  Maryland Pharmacy Assistance
                  Supplemental Security Income (SSI)
                  Children’s Medical Services (CMS)
            Fundraising
            Medical Bills

5. Transplant Team   

6. Transplantation Evaluation

7. Types Of Liver Transplantation

8. Immune System

9. Organ Donation And UNOS Criteria

10. Waiting

11.  Transplantation And The Immediate Post-Operative Period

     Pediatric Intensive Care Unit
     Complications
          Biliary Leaks
          Hepatic Artery Thrombosis
          Rejection
          Infection
          Post-Transplant-Lymphoproliferative Disorders
     Transfer To The Transplant Unit

12. Medication

     Immunosuppressants
          Cyclosporine
          Neoral
          Prograf
          Cellcept
          Imuran
          Prednisone
          OKT3
     Diuretics
          Aldactone
          Lasix
          Antihypertensives
          Nifedipine

     Antacids
          Pepcid

     Antibiotics/Antivirals/Antifungals
          Bactrim
          Acyclovir
          Ganciclovir
          Cytomegalovirus Immune Globulin
          Intravenous Immune Globulin
          Nystatin

     Others
          Asperin

13. Discharge Needs And Life After Transplant

   Medications
           When To Call The Doctor/Clinical Nurse Specialist
           Blood Pressure Monitoring
           Life After Transplant
                Nutrition
                Activity
                Dental Care For Your Child
                Sun Exposure
                Medical Alert
                Immunizations
                Childhood Illness
                Behavioral Changes
                Return To School And Daily Routine
                The Future

14. Glossary

15. Resources

              Educational
              Articles
              Newsletters
              Other Reading Material
              Organizations And Foundations
              Internet Addresses

         Baltimore
              Places To Visit
              Places To Eat
              Getting Around
              Shopping

         Johns Hopkins
              Stories About Our Children
                   Nicole
                   Danielle

FOREWORD

The goal of this book is to provide the families of children awaiting liver transplantation information on what to expect pre and post transplant.  Hopefully, the increased knowledge will help alleviate some of the fears associated with transplantation.  We tried to include all aspects of the transplantation process:  medical, emotional, psychological and financial.

Many people contributed to its creation, including surgeons, transplant coordinators, social workers, parents and friends.  Many thanks to the pediatric transplant staff at the Johns Hopkins Children’s Center, especially Barbara Wise for the content and Josie Pirro for the illustrations.

This book’s creation was made possible by a generous grant from the H.N. and Frances C. Berger Foundation of Arcadia, California in honor of Colleen Elizabeth Mitchel’s second chance at life.

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