aakp RENALIFE™ Volume 22 • Number 5 The Voice Of All Kidney Patients March/April 2007 Lexi’s Story Fun In The Sun With History As Her Guide Enjoy a Springtime Picnic! A Publication of the American Association of Kidney Patients Renalife Sept-Oct Ad v3:Fresenius Ad 1/16/07 5:17 PM Page 1 DISCOVER WHAT ULTRACARE, FROM FRESENIUS Whether in-center or in a home environment, our MEDICAL CARE, CAN MEAN FOR YOU. It means UltraCare® commitment is the same – deliver treatment options in the setting that is right for excellent patient care with superior customer you. It also means the convenience of the nation’s service. Call our national patient admission office largest network of dialysis care, with more than at the toll-free number below or find our closest 1500 locations across the United States. In location on the web. addition to in-center hemodialysis and peritoneal dialysis, which we offer nationwide, many of our 1.866.4DIALYSIS | ultracare-dialysis.com centers support an overnight nocturnal in-center hemodialysis program, as well as hemodialysis The technological edge. The human touch. programs at home. Contents March/April 2007 8 10 12 FEATURES 6 COVER STORY 10 Patient Profile COLUMNS Lexi’s Story With History As Her Guide President’s Message .............4 Lexi Martinez is an active, outgoing In 1968, Andrea Zislen was a candy 7-year-old. At the age of 5, she was striper at Kings County Hospital in New Executive Director’s Note ....4 diagnosed with fibromuscular dysplasia York. Andrea recalls the now-famous Dear Doctor ..........................5 (FMD). FMD causes abnormal cellular dialysis patients she interacted with as a development or growth in the walls of volunteer. Andrea is now a kidney patient Kidney Kids ..........................6 arteries, and is usually found in the as well, and tells her remarkable story. arteries that supply the kidneys with Feature Article ......................8 blood. We will learn more about FMD, Food For Thought Patient Profile .....................10 and about this remarkable young patient 14 who does not let her diagnosis slow her Enjoy the Outdoors for a Washington Report ............12 down! Springtime Barbeque! Food for Thought ...............14 By Mansi Mehta, RD, LDN Feature Article 8 There is the smell of fresh air and the DEPARTMENTS Fun In the Sun feel of wet grass beneath our toes that By Amy L. Friedman, MD lets us know spring is here again! Some AAKP News ........................17 patients trying to stay loyal to a strict Amy Friedman, MD, discusses the renal diet may find this time of the year Life Membership ................27 importance of limiting sun exposure and difficult. Mansi Mehta helps us answer the provides tips on protecting ourselves question, “Can I have fun without these AAKP Chapters .................31 against the effects of the sun. foods?” aakp aakpRENALIFE is published six times a year by the American Association of Kidney Patients (AAKP). It provides articles, news items and information of interest to kidney disease patients and their families, RENALIFE as well as individuals and organizations in the renal healthcare field. Kris Robinson aakpRENALIFE is distributed in January, March, May, July, September Executive Director/CEO and November and is a membership benefit. Patient or family membership Medical Editors is $25 per year. Stephen Z. Fadem, MD, FACP, FASN Opinions expressed in aakpRENALIFE by authors are not necessarily those held by AAKP, its Board of Directors or publisher. Contrasting Thomas G. Peters, MD, FACS views of readers are welcome. All letters to the editor received by AAKP Officers of AAKP will be treated as having been submitted for publication unless otherwise Roberta Wager, RN, MSN noted in writing. AAKP reserves all rights to reject, edit and/or condense President unsolicited material for reasons of space and clarity. Stephen Z. Fadem, MD, FACP, FASN Non-profit postage paid at Tampa, Fla., and additional mailing offices. Vice President © The American Association of Kidney Patients is a national non-profit Amy L. Friedman, MD organization. AAKP’s mission is to improve the lives of fellow kidney Secretary patients and their families by helping them deal with the physical, Kelly M. Mayo, MS emotional and social impact of kidney disease. All rights reserved. Treasurer For reprint requests or information on advertising, please contact the Brenda Dyson AAKP National Office at (800) 749-2257 or [email protected]. Immediate Past President American Association of Kidney Patients Advertising PolicY Statement 3505 E. Frontage Rd., Suite 315 • Tampa, Florida 33607-1796 The acceptance of advertising in this publication does not constitute (813) 636-8100 • (800) 749-AAKP or imply endorsement by the American Association of Kidney Patients Visit our Web site www.aakp.org • [email protected] (AAKP) or its Chapters of any advertised product or service. People Design and Production with kidney disease should consult their physicians before using any DebraRobertsDesign, LLC medication or therapy. AAKP accepts no responsibility for any claims made in advertisements in this publication. president’s message I hope this message finds AAKP is also working very hard to plan for its you all in good health. I 34th Annual Convention. Mark your calendar would like to introduce now! The Convention will be in St. Louis, myself. I am Bobbi Wager. I MO, from Aug. 30 – Sept. 2. Whether you’re am a transplant patient and a CKD patient, a long-term dialysis patient or the new AAKP president. a transplant recipient, you’ll want to join us in I am so pleased to be a St. Louis to learn all you can about a variety of part of this wonderful important topics. Of course, the Convention will organization helping feature exciting social events as well. I hope to patients like you remain see you there! Bobbi Wager, RN, MSN as active and healthy as possible. Once again AAKP has partnered with Ortho Biotech, L.P. to host the popular Kidney This month AAKP hosted the 12th Annual Beginnings: Live program for 2007. Kidney Medal of Excellence Award Dinner in Baltimore, Beginnings: Live is a FREE, educational MD. The Medal of Excellence Award is AAKP’s program developed for those who have recently most prestigious honor, and this year AAKP been diagnosed with reduced kidney function, honored Robert Fennell, MD as the recipient. For those with risk factors for chronic kidney disease more than 30 years, Dr. Fennell has exemplified (CKD) such as diabetes and/or hypertension, the best in the field of pediatric nephrology. As or those who have a family history of kidney Professor and Chief of the Pediatric Nephrology disease. AAKP has added dates to the program, Division of the University of Florida College of and you can find a list of locations across the Medicine, he is known by his fellow colleagues country in this magazine (Page #15). as the “consummate hands-on clinician” who is regarded as one of the most outstanding teachers, Best wishes to you all, and may your Spring scholars and healers. 2007 be safe and healthy! executive director’s note Isn’t the picture on the tests. I can only imagine how my parents worried. cover of this issue just All I really knew was that Monkey Bars, Dodge too adorable? Every Ball and other contact sports were not a part of time we spotlight a my life. I really don’t think Dodge Ball would child’s story I am truly have been one of those sports I would have taken moved and amazed by up, anyhow! the incredible strength children have. Lexi has Lexi reminds me of the importance of not taking a tremendous spirit that life too seriously. She is a strong young lady who outshines the challenges of has not made her kidney disease the focus of her Kris Robinson kidney disease and is an life. It is a lesson from which we can all learn. For inspiration to all of us as all of us, fun should come first; laughter should adults. ring often and life should be lived. There’s something different about being a child with kidney disease. I was diagnosed when I was 5 years old with a single small kidney. I never really thought anything of the doctor visits and aakpRENALIFE • MARCH/APRIL 2007 • Dear Doctor Questions From Patients • Answers From Doctors The Dear Doctor column provides readers with an opportunity to submit kidney-related health questions to healthcare professionals. The answers are not to be construed as a diagnosis and, therefore, alterations AAKP WOULD LIKE TO in current healthcare should not occur until the patient’s physician is consulted. INVITE READERS TO SUBMIT ANY MEDICAL Why does salt cause high blood pressure? QUESTIONS THEY MAY HAVE FOR REPLY Answer: When we look at our modern way The physiology of salt of life, we must admit we have come a long Eating as we do, many IN THIS COLUMN. way. Yet, while we have developed a culture people accumulate more Interested readers may based on fast foods and supermarkets, our salt and water than their mail their questions to: kidneys can handle. kidneys have not really changed. They were AAKP Dear Doctor originally designed to enable ancient ancestors Some people have genes 3505 E. Frontage Rd., Suite 315 to concentrate urine in order to become more that control cellular Tampa, FL 33607 mobile on land, i.e. to wander away from the channels, enzymes and or e-mail: [email protected] lake or pond to forage for food. The kidneys also hormones at various sites or fax: (813) 636-8122 adapted to climate - becoming more efficient at in the kidney, conserving retaining sodium (a component of salt) in hot, dry salt to enable adaptation to the (4,5) climates.