ARPKD/CHF Newsletters from 1996 to 2000 Table of Contents SPRING/SUMMER 1996; ISSUE NO. 1 ...................................................................................... 4 INTRODUCTION TO THE NEWSLETTER ............................................................................. 4 LETTERS FROM READERS .................................................................................................... 4 DIET CORNER ........................................................................................................................... 5 Fall/WINTER 1996; Issue No. 2 .................................................................................................... 5 LETTER FROM THE EDITOR ................................................................................................. 6 HIDDEN GRIEF WHEN PARENTING A CHRONICALLY ILL CHILD ................................ 6 PREPARING YOUR CHILD FOR ORGAN TRANSPLANT ................................................... 6 Mom‘s Thoughts ....................................................................................................................... 7 Dad‘s Perspective ..................................................................................................................... 7 TIDBITS ...................................................................................................................................... 8 PREDNISONE—AN IMPORTANT MEDICINE YOU LOVE TO HATE! .............................. 8 COMMON SIDE EFFECTS OF PREDNISONE .................................................................... 9 ―FAMILY NOTES‖ ..................................................................................................................... 9 SPRING/SUMMER 1997; ISSUE NO. 3 .................................................................................... 10 LETTER FROM THE EDITOR ............................................................................................... 10 RESULTS OF THE ARPKD FUNDRAISER ........................................................................... 10 QUESTIONS YOU SHOULD ASK the salespeople if you are choosing an HMO for your child: .......................................................................................................................................... 11 LIFE AFTER TRANSPLANT - Exploring the Myths and Realities ........................................ 11 ORGAN & TISSUE DONATIONS: Some Facts To Know ...................................................... 13 SOCIAL WORKERS AS RESOURSES ................................................................................... 13 Information and Referral ........................................................................................................ 13 Advocacy ................................................................................................................................ 13 Counseling .............................................................................................................................. 13 How to get connected with a social worker: .......................................................................... 14 WHAT TYPE OF PKD DO YOU HAVE? ............................................................................... 14 THOUGHT FOR THE DAY.......... ........................................................................................... 14 HOW NOT TO STARVE ON A RENAL DIET ........................................................................ 14 FALL/WINTER 1997 ISSUE No. 4 ........................................................................................... 16 LETTER FROM THE EDITOR ............................................................................................... 16 Dr. Campbell‘s Top Ten Ways On How Best To Get What You Want For Your Child From The Medical System ......................................................................................................................... 16 PARENTHOOD AFTER TRANSPLANT ................................................................................ 18 TIPS AS AN ALTERNATIVE TREATMENT … ..................................................................... 19 TOPIC: IS ARPKD REALLY A LIVER DISEASE? ............................................................... 19 WHAT IS CONGENITAL HEPATIC FIBROSIS? ................................................................ 19 FOUR MAIN PROBLEMS LIVER DISEASES MAY HAVE .............................................. 20 BLOOD FLOW ABNORMALITY AND DUCTAL PLATE MALFORMATION ............... 20 1 ARPKD/CHF Newsletters from 1996 to 2000 Table of Contents WHAT ARE SOME OF THE CLINICAL MANISFESTATIONS OF DUCTAL PLATE MALFORMATION OR CHF? ............................................................................................... 20 WHAT ABOUT THE CHICKEN POX VACCINE? ................................................................ 21 SPRING/SUMMER 1998 Issue No. 5 ......................................................................................... 21 THE FAMILY IS AFFECTED BY THE ILLNESS TOO ......................................................... 21 CAN MILK THISTLE HELP PROTECT THE LIVER? ......................................................... 22 GUESS WHO‘S COMING TO DINNER! ............................................................................... 23 QUESTIONS TO CONSIDER RE: HOSPITALIZATION ..................................................... 24 TRANSPLANT—Signs of liver graft rejection by Jeffrey Punch, MD ....................... 25 UNDERSTANDING THE TEEN YEARS ............................................................................... 26 ABOUT SPLIT LIVER TRANSPLANTS ................................................................................ 27 LETTERS FROM READERS .................................................................................................. 28 FALL/WINTER 1998 ISSUE NO. 6 ............................................................................................ 29 LETTER FROM THE EDITOR ............................................................................................... 29 YOUNG TRANSPLANT RECIPIENTS—an age-appropriate guide to helping your child with a transplant ........................................................................................................................ 29 A noted physician finds tangible proof . .WHEN SCIENCE INVESTIGATES PRAYER .... 30 SIBLINGS—The Children Who Sometimes Get Lost in the Raindrops .................................. 32 HELPFUL HINTS ..................................................................................................................... 33 SPRING/SUMMER 1999 ISSUE NO. 7 ..................................................................................... 33 LETTER FROM THE EDITOR ............................................................................................... 33 A CHILLY PEAK AT THE NEAR FUTURE ........................................................................... 33 WHAT IS POLYCYSTIC KIDNEY DISEASE? ...................................................................... 34 AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE—(ADPKD) ................. 35 AUTOSOMAL RECESSIVE POLYCYSTIC KIDNEY DISEASE—(ARPKD) ................. 35 WHEN WILL YOUR CHILD NEED A LIVER TRANSPLANT? .......................................... 36 About the liver ........................................................................................................................ 37 LETTER FROM A READER IN Hawaii: ................................................................................ 37 IDEAS FOR SELF-CARE ........................................................................................................ 38 FALL/WINTER 1999 ISSUE NO. 8 ............................................................................................ 38 1999 Annual Conference-COMMENTS FROM ATTENDEES ............................................... 38 CONGENITAL HEPATIC FIBROSIS—THE LIVER LESION OF ARPKD ......................... 40 Diagnosis ................................................................................................................................ 40 Treatment ................................................................................................................................ 41 GROWTH HORMONE THERAPY ......................................................................................... 41 ANYTHING BUT ROUTINE .................................................................................................. 42 GLOSSARY OF LABORATORY TESTS — A LOOK AT COMMON LAB TESTS ............ 43 BLOOD TESTS: ..................................................................................................................... 43 URINE TESTS: ...................................................................................................................... 44 OTHER LABORATORY TESTS: ......................................................................................... 45 2 ARPKD/CHF Newsletters from 1996 to 2000 Table of Contents BLOOD PRESSURE: ............................................................................................................. 45 WELCOME TO HOLLAND .................................................................................................... 45 SPRING/SUMMER 2000 ISSUE NO. 9 ..................................................................................... 45 POLYCYSTIC KIDNEY DISEASE: AN OVERVIEW AND COMMENTARY by Colleen B. Zak, RN .....................................................................................................................................