TRANSPLANTPROGRAM

PEDIATRIC LIVER

BRING THIS BOOK TO EVERY APPOINTMENT

PATIENT/FAMILY EDUCATION GUIDE

This University of Michigan Health System patient education guide for pediatric liver transplant patients does not provide specific medical advice and does not endorse any medical or professional service obtained through information provided within this guide.

Use of this guide does not replace medical consultation with a qualified health or medical professional to meet the health and medical needs of you or others. While the content of this guide is frequently updated, medical information changes rapidly, and therefore, some information may be out of date, and/or contain inaccuracies or typographical errors.

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WHAT’S INSIDE

Your Transplant Team

• Important Numbers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1• Team Mission and Team Structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2• Members of the Pediatric Liver Transplant Team . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Evaluation and Listing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Pre-Transplant

• Listing for Transplant . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1• After Being Listed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6• Pre-Transplant Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6• Maintaining Health While Waiting for Transplant . . . . . . . . . . . . . . . . . . . . . . . . . 8• Being “On Hold” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Financial Information

• Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1• Travel and Parking . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5• Lodging . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6• Other Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

TRANSPLANTPROGRAM

PEDIATRIC LIVER

Diet and Nutrition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Post-Transplant . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Medicines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Routine Lab Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Long-Term Care and Complications

• Monitoring Your Child’s Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1• Special Care and Potential Complications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2• Immunizations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10• Activity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12• School . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12• Pets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13• Traveling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13• Sexual Behavior and Reproduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14• Tattoos and Piercings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15• Drug, Alcohol or Tobacco Products . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Transition to Adult Care

Resources

• Glossary of Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1• Safe Use of Acetaminophen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20• Drugs to Avoid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23• Raising Funds to Cover Medical Expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24• Transplant-Related Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25• UMHS Blood Draw Stations• Durable Power of Attorney• Policy on Substance Abuse• Transplant Specialty Pharmacy Services

This Pediatric Liver Transplant Patient Education Guide was developed by the University of Michigan Transplant Center and Pediatric Liver Transplant program members:

Kila Ahlijian, RD

Ruth Barsan, RN, BSN

Stacy Brand, MBA

Emily Fredericks, PhD

Keri Gisslen, RN, MS, CPNP

M . James Lopez, MD, PhD

Amanda Knepfler, MAS

Victoria Shieck, RN, BSN, CCTN

Tanya Smith, LMSW

The Pediatric Liver Transplant Team would like to thank all of our past and present patients and their families for their contributions to this book .