Pediatric Lung Transplantation at Johns Hopkins

Table of Contents

Forward      

Overview

Function of the Lungs

Anatomy of the Lungs

Lung Dysfunction

Types of Lung Disease

• Alveolar Proteinosis (Al-vee-oh-lar Pro-ten-oh-sis)
• Bronchiectasis (Bron-key-eck-ta-sis)
• Bronchiolitis Obliterans (Bron-key-oh-light-iss Oh-blit-er-anz)
• Bronchopulmonary dysplasia (BPD) (Bron-ko-pull-mon-airy Dis-play-sha)
• Cystic Fibrosis (CF) (Sis-tick Figh-bro-sis)
• Interstitial Lung Disease
• Pulmonary Hypertension

Medical Management of Advanced Lung Disease

The Immune System

Lung Transplantation

• Types of Lung Transplants
• Organ Donation
• The Waiting List
• Timing of Transplant Evaluation

The Evaluation Process

The Transplant Team

Finances

What to Expect

• Waiting
• Before Surgery (Pre-op)
• Surgery
• After Surgery (Post-op)
• Outpatient Follow-up

Life after Transplant

Stephanie’s Story

Medications

• Immunosuppressants
• Anti-hypertensives
• Antacids
• Antibiotics/Antivirals/Antifungals
• Immunoglobulins
• Insulin

Long-term Issues

• Outcomes
• Complications

Resources

• Support Groups
• Organizations and Foundations
• Books and Newsletters
• Internet Resources

Glossary

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

This handbook was created with the help of many people including physicians, transplant coordinators, social workers, parents and friends. Portions of this handbook were made possible by The Johns Hopkins Comprehensive Transplant Center and 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.