RenalWEB Home Page
Last Updated 7/11/10

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

Prevalence and clinical implications of testosterone deficiency in men with end-stage renal disease - Advance Access abstract from NDT. - July 11, 2010
I'm going Rogue, and taking dialysis along for the ride - Blog entry from DSEN. - July 11, 2010
East Lansing man on dialysis will take 225-mile canoe trip - Article from the Lansing State Journal. - July 11, 2010
15 years on dialysis: Family celebrates man's milestone - Article from El Paso Times. - July 10, 2010
Transplant Donors And Recipients To Compete In National Games - Article from Hartford Courant (CT). - July 7, 2010
OPT: Narratives Under Siege (1): Dialysis in Paralysis - Article from Relief Web. - July 6, 2010
The Relationship of the Course of Depression Symptoms with the Left Ventricular Mass Index and Left Ventricular Filling Pressure in Chronic Hemodialysis Patients - Accepted Article abstract from Nephrology. - July 5, 2010
Depression may nearly double risk of dementia - Press release from the American Academy of Neurology. - July 5, 2010
NJ Judge Rejects Woman's Choice of 'Death over Dialysis' - Article from Cliffview Pilot. - July 4, 2010
A Psychological Intervention To Improve Quality of Life and Reduce Psychological Distress in Adults Awaiting Kidney Transplantation - Advance Access abstract from NDT. - July 4, 2010
For a Week, Kids with Renal Disease Get To Act Like Other Kids - Article from San Antonio Express-News. - July 2, 2010
Restless Legs Syndrome More Prevalent Among Hemodialysis Patients, Correlates With CRP Levels - Article from Medscape Today. - July 2, 2010
Effect of Acupressure on Thirst in Hemodialysis Patients - Issue-in-Progress abstract from Kidney and Blood Pressure Research. - July 2, 2010
Association of Cystatin C and Depression in Healthy Elders: The Health, Aging and Body Composition Study - Issue-in-Progress abstract from Nephron Clinical Practice. - July 2, 2010
The Ann and George Lopez Foundation Launch the Kidney Disease and Transplant Summer Camp Session - Article fro the San Fernando Valley Sun. - July 1, 2010
Aging in Kidney Disease: Key Issues and Gaps in Knowledge - Free, full-text article and related editorial from Advances in Chronic Kidney Disease. - July 2010
Health-Related Quality of Life in Hypertension, Chronic Kidney Disease, and Coexistent Chronic Health Conditions - Free, full-text article from Advances in Chronic Kidney Disease. - July 2010
Pregnancy in Women Treated With Dialysis: Lessons From a Large Series Over 20 Years - Free, full-text editorial from the American Journal of Kidney Diseases. - July 2010
Restless legs syndrome in hemodialysis patients: association with depression and quality of life - Article from Sleep and Breathing. - June 30, 2010
With Bad News, Families Often Don't Trust Docs - Article from Reuters. - June 30, 2010
New on KidneyTalk: Why Can't I Get Medigap Insurance? - Podcast from Renal Support Network. - June 29, 2010
Neuropsychiatric complications of chronic kidney disease - Article from Nature Reviews. - June 29, 2010
Influence of Physicians' Management and Communication Ability on Patients' Persistence With Antihypertensive Medication - Abstract from the Archives of Internal Medicine. - June 28, 2010
End-of-Life Care Has 'Room for Improvement' - Article from HealthDay. - June 28, 2010
Inspired by the King - Article from The Plano Star (Texas). - June 28, 2010
Longest-surviving kidney-failure patient gets service award - Article from The Seattle Times. - June 27, 2010
Level of Kidney Function Correlates with Cognitive Decline - Issue-in-Progress abstract from the American Journal of Nephrology. - June 25, 2010
Prevalence and Correlates of Cognitive Impairment in Hemodialysis Patients: The Frequent Hemodialysis Network Trials - CJASN Express abstract. - June 24, 2010
Obama Unveils Patient Bill of Rights - News item from HFMA. Article from AFP. - June 24, 2010
Behavioural abnormalities in children with nephrotic syndrome—an underappreciated complication of a standard treatment? - Advance Access abstract from NDT. - June 23, 2010
Encouraging Results from the Largest Clinical Study Ever Conducted on Treating Depression with Omega-3 - Press release from the Centre hospitalier de l'Université de Montréal. - June 21, 2010
Measurement of health-related quality of life in patients with chronic kidney disease in Japan with EuroQol - Article from Clinical and Experimental Nephrology. - June 21, 2010
A Longitudinal Study of Uremic Pruritus in Hemodialysis Patients - CJASN Express abstract. - June 17, 2010
Dr. Robin Eady to receive the Clyde Shields Distinguished Service Award - Blog Entry from DSEN. - June 17, 2010
The Royal Wedding of the Year? - Article from ABC News. - June 17, 2010
New Study Shows Patient Advocacy Leads to Better Care, Treatment and Quality of Life - Press release from Kidney Cancer Canada. - June 14, 2010
RSN Announces the First Ever Chronically Happy YouTube Video Contest - Press release. - June 10, 2010
Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews - Free Full-Text article from British Medical Journal. - June 10, 2010
Erectile dysfunction among hemodialysis patients - Online first abstract from International Nephrology & Urology. - June 10, 2010
Understanding the Negative Effects of Depressive Symptoms in Patients with ESRD Receiving Hemodialysis - Full-text article (8-page pdf) from Nephrology Nursing Journal. - May/June 2010
Quality of Life Measures for Patients On Hemodialysis: A Review of Psychometric Properties - Full-text article (15-page pdf) from Nephrology Nursing Journal. - May/June 2010
 
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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 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 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
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 in End-Stage Renal Disease: Current Advances and Research full-text article 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
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
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
End-of-Life Resources from the Kidney End-Of-Life Coalition web site
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
Life on Dialysis: A Lived Experience - 7-page pdf from Nephrology Nursing Journal. - January/February 2010
Live & Give Newsletter - latest bi-annual update helping educate and motivate people living with chronic kidney disease from Renal Support Network
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.
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)

Patient Advocate Foundation (PAF) web site

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
 
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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

September 2-4, 2010 - 2010 American Association of Kidney Patients (AAKP) 37th Annual Convention, Tampa Marriott Waterside Hotel & Marina, Tampa, FL - convention page, (800) 749-2257, fax (813) 636-8122, e-mail
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
 
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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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