RenalWEB Home Page
Last Updated 03/12/17

An active, fulfilling life does not end when dialysis treatments start. People who are on dialysis travel the world, attend medical school, have children, and pursue their life work and dreams. People have survived on dialysis for thirty years and some people on dialysis are over 100 years old.

This page presents articles, ideas, and sources to answer some of the questions you may have on how to make life with dialysis more comfortable and fulfilling. You will find links to web sites that people on dialysis have created to share information about coping with dialysis and kidney disease. Several links to discussion forums on kidney disease are also listed.

This page also provides resources for dealing with some of the discomforting aspects of end-stage renal disease such as itching (pruritus), dry mouth, constipation, and restless legs.

If you are seeking a inspirational public speaker on the challenges of end-stage renal disease, visit the web site of Lori Hartwell. Lori will be publishing a book shortly entitled "Chronically Happy".

If you have a concern, complaint or grievance about your care, you are encouraged to discuss it with the staff or patient representative at your dialysis center. Usually, the dialysis center will have a procedure for you to follow to make a complaint. If the problem cannot be resolved there, patients can take their concerns or grievances to their End-Stage Renal Disease (ESRD) Network for help. There are 18 ESRD Network agencies for different geographic areas of the country. The ESRD Networds are funded by the US government to monitor dialysis facility performance and to handle patient complaints. Each network agency has its own complaint handling procedure. As an example, here is the Grievance Protocol Guide for Kidney Patients from Network 16 (covers states AK, ID, MT, OR, WA).

Warning: Changes should never be made in a patient's treatment or care based solely on the information found here.  All patients have unique healthcare concerns and considerations and these must all be taken into account before any changes can be safely made.  All medical and therapeutic decisions must come from a qualified health care provider.  Read RenalWEB's Legal Disclaimer before proceeding.

  NEWS

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National Kidney Foundation 2017 Spring Clinical Meetings Abstracts from Advances in Chronic Kidney Disease - March 2017

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Hemodialysis Disparities in African Americans: The Deeply Integrated Concept of Race in the Social Fabric of Our Society - Early View abstract from Seminars in Dialysis. - March 9, 2017

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A Playbook For Managing Problems In The Last Chapter Of Your Life - Article from Kaiser Health News. PlanYourLifespan.org web site. - March 9, 2017

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Study: Medicare Prescription Drug Benefit Reduced Elderly Mortality by More Than 2 Percent - Press release from University of Illinois at Urbana-Champaign. - March 9, 2017

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50 Years, Same Kidney – The Remarkable Milestone of Thomas Hoag - Press release from Children's Hospital Los Angeles. - March 8, 2017

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For Organ Transplant Recipients, Skin Diseases and Risk Factors Differ by Race - Press release from Drexel University. - March 8, 2017

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Depression Doubles Risk of Death after Heart Attack, Angina - Press Release from the American College of Cardiology. - March 8, 2017

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Sertraline Can Reduce the Uremic Pruritus in Hemodialysis Patient: a Double Blind Randomized Clinical Trial from Southern Iran - Early View Abstract from Hemodialysis International. - March 6, 2017

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Exercise Helps Counter Cancer-Linked Fatigue - Article from HealthDay. - March 2, 2017

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An End-Of-Life Practice Survey among Clinical Nephrologists Associated with a Single Nephrology Fellowship Training Program - Free, full-text, Advance Article from Clinical Kidney Journal. - March 1, 2017

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Adults With Two or More Chronic Conditions More Likely to Use Care, More Likely to Delay Care - (Registration required, but free.) Article from Medscape Nephrology. - March 1, 2017

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Exercise Beats Weight Loss at Helping Seniors' Hearts - March 1, 2017

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The Effect of Intra-Dialytic Exercise on Inflammation and Blood Endotoxin Levels - Issue-in-Progress abstract from Blood Purification. - February 28, 2017

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Early View Abstracts from Journal of Renal Care - February 27, 2017

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New Concepts in the Management of Restless Legs Syndrome - Abstract from The BMJ. - February 27, 2017

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Pain Management in End Stage Renal Disease - Article from Pharmacy Times. - February 26, 2017

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Grievance Toolkit in Spanish - The National Forum of ESRD Networks has created a Spanish version of its new Dialysis Patient Grievance Toolkit. - February 2017

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Cognitive Remediation in Pediatric Chronic Kidney Disease and End-Stage Kidney Disease: Rationale, Candidate Interventions, and Applicability - First Online abstract from Pediatric Nephrology. - February 25, 2017

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System-Level Barriers and Facilitators for Foregoing or Withdrawing Dialysis: A Qualitative Study of Nephrologists in the United States and England - Article in Press Abstract from American Journal Of Kidney Diseases. - February 24, 2017

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Advocates Across U.S. to Bring “My Kidneys, My Life” Mantra to Washington DC for 4th Annual Kidney Patient Summit on March 6-7 - Press release from the National Kidney Foundation. - February 55, 2017

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Prevalence of Frailty in End-Stage Renal Disease: a Systematic Review and Meta-Analysis - First Online abstract from International Urology and Nephrology. - February 22, 2017

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Protecting the Tired, the Poor, the Huddled Masses - Free, full-text, perspective piece from the New England Journal of Medicine. - February 22, 2017

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Right to Try, Right to Buy, Right to Test - Opinion piece from The Washington Post. - February 21, 2017

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Testosterone Treatment and Cognitive Function in Older Men With Low Testosterone and Age-Associated Memory Impairment Testosterone Treatment Improves Bone Density and Anemia, May Lead to Cardiac Risk - Press releases from the University of Pennsylvania School of Medicine, Yale University and the JAMA Network Journals. Article from HealthDay. Free, full-text articles from JAMA and Online First articles from JAMA Internal Medicine. - February 21, 2017

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3,000 Steps in 30 Minutes Improves the Prognosis for Heart Failure - February 21, 2017

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Life Expectancy Study Shows Many Likely to Live beyond 90 by 2030 - Articles from Reuters and HealthDay. - February 21, 2017

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Place Emotional Harms on a Par with Physical Ones - Posting from the KevinMD blog. - February 20, 2017

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Effect of Magnesium Oxide Supplementation on Nocturnal Leg Cramps — A Randomized Clinical Trial - New Online abstract from JAMA Internal Medicine. - February 20, 2017

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Time, Timing, Talking and Training: Findings from an Exploratory Action Research Study to Improve Quality of End of Life Care for Minority Ethnic Kidney Patients - Free, Open Access, Advance Access Article from Clinical Kidney Journal. - February 18, 2017

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Chronic Pain More Likely for Poor, Less Educated - February 17, 2017

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Kidney Disease Is Not For the Faint of Heart - Posting via the KidneyView blog. - February 16, 2017

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Why Does Quality of Life Remain an Underinvestigated Issue in Chronic Kidney Disease and Why Is It Rarely Set As an Outcome Measure in Trials in This Population? - Advance Article abstract from NDT. - February 16, 2017

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Right-To-Die Fight Hits National Stage - Article from Kaiser Health News. - February 16, 2017

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Abstracts from Nephrology - February 16, 2017

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Patients Are Unique with Individual Needs. That Is the Art of Medicine - Posting from the KevinMD blog. - February 15, 2017

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Pain, CKD, and What to Do About It - Posting from the AJKD blog. - February 15, 2017

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Vitamin D Deficiency Is Significantly Associated with Depression in Patients with Chronic Kidney Disease - Free, Open Access Article from PLOS ONE. - February 14, 2017

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Pregnancy in Chronic Kidney Disease and Kidney Transplantation - Article in Press abstract from Kidney International. - February 13, 2017

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Try Drug-Free Options First for Low Back Pain, New Guidelines Say - Article from HealthDay. Latest clinical guidelines and summary for patients from Annals of Internal Medicine. - February 13, 2017

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Death Doesn't Have To Be So Scary - Article from Kaiser Health News. - February 13, 2017

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The Limits of Compassion: Dialysis and the Undocumented – A Solution - Part 2 blog posting from the Center for Ethics and Health Policy — Baylor College of Medicine. - February 10, 2017

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Caregivers Should Be Screened Early, Often to Prevent Depression, Anxiety - Press release from University of Missouri. - February 10, 2017

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Free, Full-Text Articles from Journal of Renal Care - February 3, 2017

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The Choice of Renal Replacement Therapy (CORETH) Project: Dialysis Patients' Psychosocial Characteristics and Treatment Satisfaction - Free, Full-Text Article from NDT - February 02, 2017

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Free Issue (January 2017) of Hemodialysis International - January 2017
Included among the 23 Articles and Case Reports:

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Patients Receiving Frequent Hemodialysis Have Better Health-Related Quality of Life Compared to Patients Receiving Conventional Hemodialysis - Free, full-text article from Kidney International. Also see this recent supplemental issue on intensive hemodialysis from AJKD. - January 14, 2017

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The Prevalence, Association, and Clinical Outcomes of Frailty in Maintenance Dialysis Patients - Free, Full-Text Article from Journal Of Renal Nutrition. - January 4, 2017

 
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  DAILY COMFORTS

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Mayo Clinic Q and A: Restless Legs Syndrome 

blue ball Why Am I So Thirsty? and Porqué Me Da Tanta Sed? (pdf format requires Adobe Acrobat reader) from the ESRD Network of Texas web site
Sleep and Sleep Disorders from the Centers for Disease Control and Prevention (CDC) web site (page down if you don't see the article)
Obstructive sleep apnoea clinical signs, diagnosis and treatment full-text editorial commentary from Nephrology Dialysis Transplantation
Just the Facts: Restless Legs Syndrome and Información esencial: Síndrome de piernas inquietas (pdf format requires Adobe Acrobat Reader) from the Life Options web site
Just the Facts: Skin and Hair Problems on Dialysis and Información esencial:Problemas del cabello y de la piel por la diálisis (pdf format requires Adobe Acrobat Reader) from the Life Options web site
Skin Problems in Chronic Kidney Disease - free, full-text , advance online review from Nature Clinical Practice Nephrology - February 2009
comfort AND dialysis - PubMed search Continually Updated!
restless leg syndrome - PubMed search Continually Updated!
constipation and dialysis - PubMed search Continually Updated!
exercise and dialysis - PubMed search Continually Updated!
thirst AND dialysis - PubMed search Continually Updated!
itching AND dialysis - PubMed search Continually Updated!
 
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  VACATIONS & TRAVELING

Just the Facts: Traveling on Dialysis and Información esencial: Viajes con diálisis (pdf format requires Adobe Acrobat Reader) from the Life Options web site
AKFCamp List for Pediatric ESRD Patients from the American Kidney Fund (AKF)
Peritoneal Dialysis Travel “Tool Box” (pdf format requires Adobe Acrobat reader) from the ANNA web site
Dialysis at Sea Cruises - cruises for hemodialysis, CAPD, CCPD, and transplant patients
Dialysis Travel Websites - dialysisfinder.com and Nephron Information Center
 

  EMOTIONAL EFFECTS AND DEPRESSION

Just the Facts: Dealing with Depression and Información esencial: Cómo enfrentar la depresión (pdf format requires Adobe Acrobat Reader) from the Life Options web site
New Book: Dialysis without Fear from the Oxford University Press - Dr. Offer brings his years as a psychiatrist to bear as he provides practical advice on how patients can overcome fears and hardship
Depression on Dialysis full-text minireview from Nephron Clinical Practice
When Your Loved One is Depressed from the American Association of Kidney Patients (AAKP)
Depression in End-Stage Renal Disease: Current Advances and Research abstract from Seminars in Dialysis. - January/February 2010
Depression and its association with peritonitis in long-term peritoneal dialysis patients - abstract from the American Journal of Kidney Diseases (AJKD) - August 2003
The Emotional Effects of Kidney Failure from the Kidney Patient's Guide (UK site) web site
Depression AND dialysis - PubMed search Continually Updated!
 
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  INSPIRATIONAL RESOURCES

Chronically Happy is an inspirational book, by Lori Hartwell, that helps people living with chronic illness create joyful, fulfilling lives.
Strength and Compassion in Kidney Failure, a book by Mildred Friedman
Tips & Stories from the Life Options Rehabilitation Program web site
Caregivers, Partners, Family and Friends from the Kidney Patient's Guide (UK site) web site
Dialysis without Fear: A Guide to Living Well on Dialysis for Patients and Their Families - book about dialysis from the patient's perspective

Hope, Inspiration & Wisdom: A Treasury of Thoughts on Coping with Kidney Disease book from Renal Support Network

Sorrow's Reward - book by author and Nephrologist Robert Bear provides shocking insights into this environment, AND revelations on mortality, and the nature of courage.
THAT DAMN DIALYSIS - book about dialysis from the patient's perspective
 
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  SEX & PREGNANCY

Pregnancy After Transplant from the Transplant Living web site
Sexuality and Chronic Kidney Disease from the National Kidney Foundation (NKF)
sexual function AND dialysis - PubMed search Continually Updated!
childbirth AND dialysis - PubMed search Continually Updated!
Efficacy of Oral Sildenafil in Hemodialysis Patients with Erectile Dysfunction - abstract from the the Journal of the American Society of Nephrology (JASN) - November 2002
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Dialysis and Pregnancy: No Longer The Impossible - free full-text editorial from NDT. Related abstracts:

 
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  WEB RESOURCES

Latest Scientific Journal Articles on Quality of Life
The Fund's Help Line - A Community Service Lifeline from the American Kidney Fund web site
aakpRenalife a magazine for dialysis patients from the American Association of Kidney Patients (AAKP)
BenefitsCheckUpRx - this fast, free, and confidential service will help you or someone you love find public and private programs to save the most money on prescription drugs - from the National Council on Aging (NCOA)

Kidney Living is a FREE magazine for dialysis patients from the National Kidney Foundation's web site

Live & Give Newsletter - from of the Renal Support Network web site
The Advance Health Care Directive Act (pdf format requires Adobe Acrobat Reader) from the Southern California Renal Disease Council web site
CDC-TV online video resource from the Centers for Disease Control and Prevention (CDC) web site
DaVita Patient Citizens from the DaVita web site

Delicious! 2nd Edition- AAKP recipe cookbook

DPC Education Center - dedicated to improving kidney patients’ quality of life and reducing the occurrence of ESRD through education and by developing awareness of dialysis and kidney disease issues, improving the partnership between patients and caregivers, and developing favorable public policy solutions.
Employment: A Kidney Patient's Guide to Working and Paying for Treatment (pdf format requires Adobe Acrobat reader) from the Life Options web site

Engaging Patients in Care Design - from Hospital & Health Networks

Empowering Caregivers - Choices, Healing, Love, For All Articles, emotional & spiritual support, tools for caregivers
End-of-Life Resources from the Coalition for Supportive Care of Kidney Patients
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new Grievance Toolkit in Spanish - The National Forum of ESRD Networks has created a Spanish version of its new Dialysis Patient Grievance Toolkit. 

Help! I Need Dialysis! -- E-book by Dori Schatell, John Agar

Just the Facts: How to Talk to Your Healthcare Team and Información esencial:Cómo hablar con su equipo de atención médica (pdf format requires Adobe Acrobat Reader) from the Life Options web site
KidneyTalk from the Renal Support Network web site
Life Options Teaching Tools from Life Options
NeedyMeds Kidney Disease Resource Page from NeedyMeds. The resource page is intended to streamline and simplify the way those with kidney disease may find assistance paying for their medications.
PatientsLikeMe is here to help. Our researchers, doctors, and patient caregivers are committed to helping collect and share information that makes a difference.
Quackwatch - A Guide to Health Fraud, Quackery, and Intelligent Decisions.

Taking Care of What Matters — You - 1-page pdf from Northwest Renal Network.

Just the Facts: Rehabilitation and Información esencial: Rehabilitación (pdf format requires Adobe Acrobat Reader) from the Life Options web site
Staying Fit With Kidney Disease from the National Kidney Foundation (NKF)
 
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  PATIENT WEB SITES

Barbara's Kidney Web Site
Dialysis & Kidney Disease Face Book discussion page
Care-Partners for Home Dialysis Face Book discussion page

Communications from the Heart web site by Lori Hartwell

I Hate Dialysis web site
I Hate Dialysis Face Book discussion page
Kidney Disease, Dialysis, and Transplantation Face Book discussion page
Polycystic Kidney Disease Face Book discussion page
Women's Renal Failure Support Face Book discussion page
 
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  ORGANIZATIONAL & EDUCATIONAL WEB SITES

Aging with Dignity web site
Alliance for Home Dialysis web site

American Association of Kidney Patients (AAKP) web site

American Diabetic Association (ADA) web site

American Kidney Fund (AKF) web site

B.Braun Avitum web site

CaregiverStress web site
Coalition for Supportive Care of Kidney Patients web site
Dialysis/Transplant Patient web sites
The Disabled Living Foundation web site
European Kidney Patients' Federation web site

Forum of End Stage Renal Disease Networks with links to all 18 ESRD Networks

Health Library from the Renal Support Network (RSN) web site
Home Dialysis Central web site
Home Dialyzors United web site

Innovation Center a new website for a new approach to healthcare from the Center for Medicare and Medicaid

Kidney & Urology Foundation of America (KUFA) web site
Kidney Care Partners web site
Kidney Community Emergency Response web site
Kidney Patient News web site
Kidney School web site and Printed Life Options Kidney School Modules

Kidney Smart web site from DaVita

KidneysDoThat.org web site

Module Twelve: Staying active with kidney disease from the Life Options Rehabilitation Program: Kidney School™

Life Options Rehabilitation Program web site - "Dedicated to helping dialysis patients realize their fullest potential"

Living Kidney Donor Search web site

Lupus Foundation of America web site

Mayo Clinic's Online Health Community web site

National Association of Professional Home Care web site

National Family Caregivers Association (NFCA) web site

National Institute of Diabetes & Digestive & Kidney Disease (NIDDK) web site

National Kidney Foundation (US site) web site

National Kidney Federation (UK site) web site

National Patient Safety Agency web site (UK organization)
Patient Access Network Foundation web site - medication assistance

Patient Advocate Foundation (PAF) web site

Polycystic Kidney Research Foundation web site

Renal Support Network (RSN) web site and HOPEline

Restless Legs Syndrome Foundation web site

Safe Kidney Care web site
S.L.E. Lupus Foundation web site - helping people with lupus for over 35 years
Supportive Care Coalition web site

Willis-Ekbom Disease Foundation (Restless Legs Syndrome Foundation) web site (opens new browser window)

 

  PUBMED SEARCHES (National Library of Medicine's MEDLINE Database)

PubMed Search Tool of the National Library Of Medicine's MEDLINE Database (allows you to search through over 11 million indexed articles). Due to copyright laws, only the abstracts (summaries) of the articles are usually listed. Some articles appear in full text on the publishers' web sites that are linked to PubMed. This page provides an Overview of PubMed.
quality of life AND life style AND dialysis - PubMed search Continually Updated!
well-being AND dialysis - PubMed search Continually Updated!
coping AND dialysis - PubMed search Continually Updated!
 

  DISCUSSION FORUM

Patient-Centered Dialysis Care Discussion Forum on RenalWEB
Renal Rehabilitation Discussion Forum on RenalWEB
Dialysis Nursing Discussion Forum on RenalWEB
HealCam - from MedGadget.
Nephkids - a cyber-support group for Parents of Children with Kidney Disease
 
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  PRODUCTS

Poignant Moments...A Caregiver's Perspective - New book written by John Francis Wissler, caregiver to his spouse Lois, an ESRD patient.
Smart Technology for Aging, Disability and Independence: The State of the Science - 379 page book by William C. Mann (hardcover $84.95)
Guided Imagery Tape for Dialysis Patients (Beware of claims that are not supported by medical evidence.)
 
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  UPCOMING EVENTS

National Kidney Foundation (NKF) Health Screening Schedule
Kidney Walk Schedule - NKF web site, e-mail NKF (800) 622-9010, (212) 889-2210, Fax (212) 689-9261
Renal Support Network (RSN) Renal Events Calendar
How the HealthWell Foundation Helps Patients Afford Therapies They Need - Audio conferences from the HealthWell Foundation® web site
 
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  RELATED TOPICS

RenalWEB's Patient Education Topic Page Continually Updated!
RenalWEB's Well Nourished Patient Topic Page Continually Updated!
RenalWEB's Adequate Hemodialysis Therapy Topic Page Continually Updated!
RenalWEB's Adequate Peritoneal Dialysis Therapy Topic Page Continually Updated!
RenalWEB's Kidney Transplantation Topic Page from RenalWEB Continually Updated!
 
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  INPUT / SUGGESTIONS

E-mail to RenalWEB on Comfort & Living A Full Life
 
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