Pediatric Liver Transplantation Information for Healthcare Professionals

Chapter 15: Resources

Educational Resources

Articles

“A Critical Shortage of Live Transplant;” Washington Post (April 1991)

“A Leap of Faith – One Mother’s Extraordinary Choice;” Family Circle (December 1990)

“A New King of Kinship – Transplants,” National Geographic (September 1991)

Encore Magazine – Another Chance for Life; Free Subscription

“Greater Public Awareness is the Key – Life Giving Donations;” Howard County General Hospital

“Biliary Atresia;” National Organization for Rare Disorders (NORD) (March 1991)

“Routine Inquiries about Organ Donation – An Alternative to Presumed Consent;” The New England Journal of Medicine (October 24, 1991)

Newsletters

Bridges, The patient newsletter of the Johns Hopkins Comprehensive Transplant Center.  Bridges aims to provide support for patients and their caretakers, to connect the CTC to its transplant family, and to inform patients about news within the transplant community.

The Biliary Tree, 3835 Richmond Avenue, Box 190, Staten Island, New York 10312

Encore magazine, Chronimed Publishing, P.O. Box 46181, Minneapolis, Mn 55446-9920

Stadtlanders Lifetimes, Attn: Marketing Department, 600 Penn Center Blvd., Pittsburgh, Pa. 15235-9931

Transplant Chronicals, National Kidney Foundation, 30 East 33^rd Street, New York, NY 10016

Transplant News, TRIO, P.O. Box 7633, Arlington, Va. 22207

Other Reading Material

Whole Parent, Whole Child

By Patricia M. Moynihan R.N., P.N.P. M.P.H. and Broatch Haig R.D., C.D.E.A.

Parent’s guide to raising a child with a chronic illness.  Here’s everything parents of children with chronic health conditions need to know.  With authority, insight and compassion, this book shows you how to be the kind of parent you want to be and how to help your child with a chronic illness lead the fullest life possible. ($9.95, Order #00451)

Transplants: Unwrapping the Second Gift of Life

By Pat Starver Helmberger

The inside story of organ transplant as told by recipients and their families, donor families and health professionals.  Through fascinating interviews with organ recipients and their families, donor families and medical professionals, this book explores the human side of transplants, dispels the myths and offers insights from those who have gone through it. ($9.95, Order #004200

Organ Transplant: A Patient’s Guide

By the Massachusetts General Hospital Transplant Team and H.F. Pizer

Here’s a complete and easy to understand guide to kidney, heart, heart-lung, lung, liver, pancreas and bone marrow transplants. $24.95, Order #004626

We Have A Donor

By Mark Dowie

The bold new world of organ transplanting.  This well-researched, readable and thorough account explores the advanced medicine, ethic and human drama behind the new science of organ transplantation. ($16.95, Order #004621

The Chronically Ill Child

By Audrey T. McCollum, M.S., Little, Brown Company, 1975

How to Get Your Kid to Eat…But Not Too Much

By Ellyn Satter, Bull Publishing Company, 1987

Chronimed Publishing

P.O. Box 47945, Department 861, Minneapolis, Mn 55447-9729  Order by phone: 1-800-848-2793  Ext. 861

Organizations and Foundations

American Liver Foundation
National Capital Area Chapter
127 S. Peyton Street, Suite 220
Alexandria, VA 22314
www.alfdc.org

Biliary Atresia and Liver Transplant Network (BALT)
3835 Richmond Avenue
Box 190
Staten Island, N.Y. 10312
(718) 987-6200

National Kidney Foundation (NKF)
30 East 33^rd Street
New York, New York 10016
(800) 622-9010

(202) 244-7900

United Network for Organ Sharing (UNOS)
P.O. Box 13770
Richmond, Va. 23225-8700
(800) 292-9548

U.S. Dept. of Health and Human Services (HHS), Division of Transplantation (301) 443-7577

Internet Addresses

American Liver Foundation: http://sadieo.ucsf.edu/alf/alffinal/homepagealf.html

American Share Coalition of Transplantation (ASCOT): http://www.asf.org

Biliary Atresia and Liver Transplant Network (BALT): http://www.asf.org/balt.html

Coalition of Donation: http:www.infi.net/-donation/

NIH National Library of Medicine: http://www.nlm.nih.gov/

Transweb: http://www.transweb.org/

United Network for Organ Sharing (UNOS): http:www.infi.net/-shreorg/unos.html

U.S. Dept. of HHS, Division of Transplantation:http://www.hrsa.dhhs.gov/bhrd/dot

Washington Regional Transplant Consortium (WRTC): http://www.clark.net/pub/wrtc/

Other Resources

National Resources Directory, published by Stadtlanders Pharmacy (800) 238-7828

Sandoz Drug Share Program (N.O.R.D.) (800) 447-6673

Transplant Support Group Directory, published by Chronimed Pharmacy (800) 753-5583

Baltimore

The Inner Harbor is the city’s centerpiece, a showcase of shops and restaurants. The summer is especially vibrant as the city celebrates its ethnic and cultural roots in a series of colorful festivals.  History buffs will enjoy visiting Fort McHenry which inspired the “Star-Spangled Banner”.  Lovers of the visual arts can visit the Cone Collection of early 20^th century works housed at the Baltimore Museum of Art.  Sports fans can cheer the world famous Orioles, Ravens, Skipjacks ice hockey or the Blast indoor soccer during their seasons.

Places to Visit in Baltimore

Maryland Science Center                  (410) 685-5525
601 Light Street

B&O Railroad Museum                    (410) 752-2490
901 W. Pratt Street

Baltimore Zoo                                   (410) 366-LION ext.  5466
Druid Hill Park

Baltimore Children’s Museum           (410) 823-2250
10440 Falls Road

National Aquarium                             (410) 576-3810

Babe Ruth Birthplace                          (410) 727-1539

Fort McHenry                                      (410) 837-1743
East of E. Fort Avenue

Discovery Zone

Loch Raven Reservoir, Park with places to swim and boat

Places to Eat in Baltimore

AMERICAN:

American Café                         
Light Street Pavilion   
Harbor Place                            
Phone: 962-8800                       

Bertha’s                                      The Red Star
734 South Broadway                  906 S. Wolfe St.
Fells Point                                   Fells Point
Phone: 327-5795                         Phone: 327-2212
                                                     $7.95-$13.95

CHINESE:

Bamboo House                             Tony Cheng’s Szechuan
Pratt Street Pavilion                      801 N. Charles Street
Harbor Place                                 Downtown
Phone: 625-1191                           Phone: 539-6666
$7.95-$27.00                                 $8.95-$28.95

ITALIAN:                  

Sabatino’s                                     Chiapparelli’s
901 Fawn Street                             327 S. High Street  
Little Italy                                      Little Italy
Phone: 727-9414                            Phone: 837-0309

Getting Around Baltimore

Buses                 539-5000
Subway              539-5000
Lightrail             539-5000
MARC train       1-800-325-7245
AMTRAK          1-800-872-7245
Yellow Cab        685-1212

Shopping in Baltimore

Golden Ring Mall
6400 Rossville Boulevard
Baltimore, Md. 21237
Phone: 391-8400

White Marsh Mall, Inc.
8200 Perry Hall Boulevard
Baltimore, Md. 21236
Phone: 931-7100

East Point Mall
7839 Eastpoint Mall
Baltimore, Md. 21224
Phone: 284-0934

Harbor Place and The Gallery at Inner Harbor
Pratt and Calvert Streets

Johns Hopkins Important Telephone Numbers:

Pediatric Intensive Care (PICU)
(410) 955-5260

Eating in the Hospital:

Cafeteria – 1^st floor
Tower Terrace Restaurant – 1^st floor
Corridor Café – Monument & Rutland
Hampton House Café – 624 N. Broadway
The Grille – Outpatient Center