RenalWEB Home Page
Last Updated 06/14/09

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

Camp Sunshine Celebrates 25th Anniversary - Article from PRNewswire. - June 10, 2009
Natalie Cole To Resume Singing Tour After Kidney Transplant - Article from Reuters. - June 9, 2009
American Kidney Fund Receives 7th Consecutive 4-Star Rating from Charity Navigator - Article from PRWeb. - June 9, 2009
National Kidney Foundation of Hawaii Launches On-Line Auction - Article from the Honolulu Advertiser. - June 9, 2009
Cyclist's message: Dialysis doesn't restrict activity - Article from the Abilene Reporter News. - June 6, 2009
Prevalence of Major Depressive Episode in CKD - Article in Press abstract from the American Journal of Kidney Diseases. - June 4, 2009
Dialysis in the Elderly - Blog entry from Renal Fellow Network. - June 2, 2009
Elderly Patients and Elderly Donors - Viewpoint from Medscape Nephrology. - May 28, 2009
Expert Says Avoiding End-of-Life Care Discussions May Give Patients "Misguided Sense of Hope" - Article from The New York Times. - May 28, 2009
Couple May Divorce To Qualify For Dialysis Health Benefits - Article from WCCO TV (Minnesota). - May 28, 2009
Circadian Sleep–Wake Rhythm Disturbances in End-Stage Renal Disease - Free, full-text review from Nature Reviews Nephrology. - May 26, 2009
Planning a Social Activity to Improve Psychological Well-being and Quality of Life of Hemodialysis Patients: A Pilot Study - Early View abstract from Therapeutic Apheresis and Dialysis. - May 26, 2009
"This pilot study showed that social activity primarily improved depression and self-esteem in hemodialysis patients."-
AAKP Mourns the Passing of Former President Joseph D. White - Article from the American Association of Kidney Patients (AAKP). - May 26, 2009
Intervention Helps Reduce Pain and Depression - News release and free, abstract from the Journal of the American Medical Association. - May 26, 2009
American Kidney Fund's New Podcast "Strength in Caring" Offers Care Providers an Overview of Compassion Fatigue - Article from dMediaWire. - May 26, 2009
Sleeping Through Dialysis: No Nightmare for Kidney Patients - News release and CJASN ePress abstract from the American Society of Nephrology. Article from HealthDay. - May 21, 2009
Community Dialysis Patient Support Group in St. Petersburg - Article from The Weekly Challenger. - May 21, 2009
Natalie Cole Recovering After Kidney Transplant - Article from WebMD. - May 21, 2009
Cognitive–Behavioral Group Therapy Is an Effective Treatment for Major Depression in Hemodialysis Patients - Abstract of Advance Online article from Kidney International. - May 20, 2009
Last Call for Nominations to the AAKP Board of Directors - Article from the American Association of Kidney Patients (AAKP). - May 19, 2009
Nephrologist Uses Photos To Take ill Patients' Minds to Other Places - Article from The Oregonian. - May 19, 2009
Hospital Room Design Can Have Effect on Patient Care, Outcomes, Studies Show - News summary from Kaiser Network. - May 19, 2009
American Kidney Fund Welcomes David Frazer as Vice President of Patient Services and Kidney Disease Education - Article from PRWeb. - May 19, 2009
2010 Freedom Cruise Information - 7-day cruise for Jan. 3-10, 2010 planned by dialysis patients. - May 2009
Kidney-Themed 30 Rock Episode - Article from Renal Fellow Network. - May 16, 2009
 
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  DAILY COMFORTS

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 Apnea and Dialysis Patients news summary from RenalWEB - last updated on April 26, 2004
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
Restless Legs Syndrome - news summary from RenalWEB - last updated on December 30, 2004
Q&A on Restless Legs Syndrome from the BBC Health web site
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
Getting on your nerves: neuropathy and dialysis - article from Home Dialysis Central 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
Uremic pruritus in chronic hemodialysis patients - review (pdf format requires Adobe Acrobat Reader) from the Journal of Nephrology - March/April 2008
End-of-Life Care news summary from RenalWEB - last updated on December 29, 2004
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
AKF 2006 Camp List for Pediatric ESRD Patients (pdf) from the American Kidney Fund (AKF)
What do I Need to do Before Traveling as a Dialysis Patient? - from the AAKP web site
Peritoneal Dialysis Travel “Tool Box” (pdf format requires Adobe Acrobat reader) from the ANNA web site
Island Dialysis - Jamaica, St. Lucia and Barbados
Dialysis at Sea Cruises - cruises for hemodialysis, CAPD, CCPD, and transplant patients
Dialysis Travel Websites - dialysisfinder.com and Nephron Information Center
Also consider using Yahoo to locate web sites on dialysis travel services.
 

  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
Understanding Depression in Kidney Disease from the American Association of Kidney Patients (AAKP)
When Your Loved One is Depressed from the American Association of Kidney Patients (AAKP)
Depression and Dialysis Patients news summary from RenalWEB - last updated on September 14, 2004
Depression and its association with peritonitis in long-term peritoneal dialysis patients - abstract from the American Journal of Kidney Diseases (AJKD) - August 2003
Exercise Lowers Depression, Increases Stamina news summary from RenalWEB - last updated on October 5, 2004
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.
Religion and Medicine news summary from RenalWEB - last updated on February 10, 2004
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
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!
Narrative Literature Review: Sexual Dysfunction in the Patient on Hemodialysis - (pdf format requires Adobe Acrobat reader) article from the Nephrology Nursing Journal
Pregnancy: Kidney Diseases and Hypertension - free, full-text core curriculum outline from American Journal of Kidney Diseases (AJKD) - February 2007
Efficacy of Oral Sildenafil in Hemodialysis Patients with Erectile Dysfunction - abstract from the the Journal of the American Society of Nephrology (JASN) - November 2002
Requiring Higher Doses of Erythropoietin Suggests Pregnancy in Hemodialysis Patients - abstract from The Nephron Journals - 1998
 
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  WEB RESOURCES

Latest Scientific Journal Articles on Quality of Life - list compiled by RenalWEB's Journal Watch
AAKP Diet Tips and Bits from the American Association of Kidney Patients (AAKP) web site
The Fund's Help Line - A Community Service Lifeline from the American Kidney Fund web site
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 Access to Benefits Coalition web site
Kidney Beginnings (pdf format requires Adobe Acrobat reader) - from the American Association of Kidney Patients (AAKP) web site
Kidney Beginnings: The Magazine - from the American Association of Kidney Patients (AAKP) web site
aakpRENALIFE - from the American Association of Kidney Patients (AAKP) 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
Employment: A Kidney Patient's Guide to Working and Paying for Treatment (pdf format requires Adobe Acrobat reader) from the Life Options web site
Empowering Caregivers - Choices, Healing, Love, For All Articles, emotional & spiritual support, tools for caregivers
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
Keeping Fit On Dialysis from the UK National Kidney Foundation web site
Keeping Your Job When You Need Dialysis from the Home Dialysis Central web site
Kidney Health Podcast Series from the American Kidney Fund (AKF) web site
Kidney Patient HealthLine - free, one-hour conference call designed to educate kidney patients on a variety of topics affecting them and their families, from the American Association of Kidney Patients
KidneyTalk from the Renal Support Network web site
Life Options Teaching Tools from Life Options
Living Day-to-day with Kidney Dialysis+ from the FDA Consumer magazine web site+
Managing your Life with Kidney Failure from the National Kidney Foundation web site
The National Kidney Foundation’s, People Like Us is offering a series of monthly educational telephone forums entitled Coffee House Conversations™ telephone series.
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.
Quality of Life: Subjective Descriptions of Challenges to Patients With End Stage Renal Disease from the Nephrology Nursing Journal
Just the Facts: Rehabilitation and Información esencial: Rehabilitación (pdf format requires Adobe Acrobat Reader) from the Life Options web site
renalinfo web site from Baxter International Inc.
Spanish Resource Guide - list of resources in Spanish from the American Nephrology Nurses Association (ANNA) - September 2006
Staying Fit With Kidney Disease from the National Kidney Foundation (NKF)
 
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  PATIENT WEB SITES

Communications from the Heart web site by Lori Hartwell

Barbara's Kidney Web Site
 
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  ORGANIZATIONAL & EDUCATIONAL WEB SITES

American Association of Kidney Patients (AAKP) web site

American Diabetic Association (ADA) web site

American Kidney Fund (AKF) web site

Association of Dialysis Advocates web sites
Dialysis/Transplant Patient web sites
The Disabled Living Foundation web site
European Kidney Patients' Federation web site (UK version)
Everyday Choices for A Healthier LIFE web site

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

Home Dialysis Central web site

Hope Street web site from the National Kidney Foundation

InteliHealth  is the top-rated web site for general health information (subsidiary of Aetna U.S. Healthcare)
Kidney & Urology Foundation of America (KUFA) web site
Kidney End-Of-Life Coalition web site
Kidney Patient News web site
Kidney School web site and Printed Life Options Kidney School Modules
Kidney Times web site from the Renal Support Network (RSN)
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"

Lupus Foundation of America 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)

Polycystic Kidney Research Foundation web site

Renal Health web site

Renal Support Network (RSN) web site and HOPEline

Restless Legs Syndrome Foundation web site (opens new browser window)

S.L.E. Lupus Foundation web site - helping people with lupus for over 35 years
Small Comforts Foundation is a not-for-profit organization dedicated to funding and administering programs which will improve the quality of life and raise the morale of people living with chronic illness or other medical problems.
 

  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
Ask Beth (Beth Witten, MSW, ACSW, LSCSW) from the Life Options web site
DIALYSIS_SUPPORT - from Yahoo Groups - end-stage renal disease (ESRD) support and educational forum
Nephkids - a cyber-support group for Parents of Children with Kidney Disease
United States Renal Data System (USRDS) Discussion Forum
 
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  PRODUCTS

Communication Prescription: A video education program for the renal care professional RN (Price $399 plus shipping and handling) from the Hartwell Communications
Poignant Moments...A Caregiver's Perspective - New book written by John Francis Wissler, caregiver to his spouse Lois, an ESRD patient.
The Lighter Side of Dialysis - book of comic illustrations by a dialysis patient
Equipment for the disabled web sites from Yahoo.com
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
Renal Support Network Patient Lifestyle Meetings 2009-2010 Schedule
Kidney Beginnings: Live Schedule presented by the American Association of Kidney Patients (AAKP) - AAKP web site, (800) 749-2257, fax (813) 5639-8122, e-mail

September 3-5, 2009 - 2009 American Association of Kidney Patients (AAKP) Annual Convention: Going the Extra Mile, Hyatt Regency Denver, Denver, CO - convention page, AAKP web site, (800) 749-2257, fax (813) 636-8122, e-mail

 
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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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