RenalWEB Home Page
Last Updated 2/21/10

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

The Views of Patients and Carers in Treatment Decision Making for Chronic Kidney Disease: Systematic Review and Thematic Synthesis of Qualitative Studies - Free, full-text article from British Medical Journal. - February 19, 2010
"The experiences of other patients greatly influenced the decision making of patients and care (givers)."
Depression as a Potential Explanation for Gender Differences in Health-Related Quality of Life among Patients on Maintenance Hemodialysis - Issue-in-Progress abstract from Nephron Clinical Practice. - February 19, 2010
Happiness Makes for a Healthy Heart - Article from Reuters. - February 18, 2010
Kidney and Brain—a Renal Perspective of ‘Les Liaisons Dangereuses’ - Free, full-text, Advance Access editorial commentary from NDT. - February 17, 2010
Nurse-Patient Communication While Perfroming Home Dialysis: The Patients' Perceptions - Abstract from Journal of Renal Care. - February 15, 2010
Physical and Psychological Burden of Chronic Kidney Disease among Older Adults - Issue-in-Progress abstract from American Journal of Nephrology. - February 13, 2010
Effects of Interleukin-6 on Depression Risk in Dialysis Patients - Issue-in-Progress abstract from The American Journal of Nephrology. - February 13, 2010
Taking Peritoneal Dialysis to Sea: Jean Louis Clémendot Crosses Atlantic Alone; Eyes Tour of the US East Coast and then the Pacific! - Blog entry by Bill Peckham from Dialysis from the Sharp End of the Needle. - February 12, 2010
Quality of Life and Alternate Nightly Nocturnal Home Hemodialysis - Abstract from Hemodialysis International. - February 11, 2010
Survival Benefit with High-Intensity End-of-Life Approaches - Press release from the University of Pittsburgh Schools of the Health Sciences. - February 11, 2010
Urgent Need for Four-Wheel-Drive Rides for Dialysis Patients Continues in Mid-Atlantic Region - News item from USA Today. - February 11, 2010
Being Bored Could Be Bad for Your Health - Article from AP. - February 10, 2010
End-of-life Care Must Reflect Patient Wishes and Values - Press release from Brown University. Article from HealthDay. (Also see section below.) - February 9, 2010
The Right Start Program: Do You Remember How You Felt When You Started Dialysis? - KidneyTalk! podcast from Renal Support Network. - February 9, 2010
Youth Advocate in Connecticut Uses Motivational Skills To Cope with Dialysis Sessions - Article from The New Haven Register.. - February 9, 2010

The Doctor Will Never See You Again - Article from The Wall Street Journal. - February 8, 2010
Editor's note: The article concludes with the well-known case that went to a U.S. Court of Appeals concerning Dr. John Bower, a Mississippi nephrologist. Related links from The Renal Network, Inc.:

Brain Damage Seen in People With Severe Sleep Apnea - Article from HealthDay. - February 3, 2010
In UK, Petition Campaign Gains Momentum To Keep Dialysis Clinic Open Longer Hours for Working Patients - Article from Scarborough Evening News. - February 3, 2010

Diabetes Patients Rank Health Concerns Differently Than Their Doctors - News release from the University of Michigan Health System. - February 2, 2010
Editor's Note: I believe a similar study on dialysis patients and nephrologists would show ENORMOUS differences on which health conditions each group considers most important.

I think the nephrologists would name their usual biochemical markers and the patients would list several quality-of-life measures. This is the big "disconnect" in ESRD care.

Patient Views About Treatment of Stage 5 CKD: A Qualitative Analysis of Semistructured Interviews - Article in Press abstract from the American Journal of Kidney Diseases. - February 1, 2010
Poker's Jennifer Harman Will Donate 1 Percent of Winnings to NephCure Foundation - Article from CardPlayer.com. - February 1, 2010
"I'm Sorry": Why Is That So Hard for Doctors To Say? - Article from American Medical News. - February 2010
World Kidney Day 2010: Diabetic Kidney Disease—Act Now or Pay Later - Article from American Journal of Kidney Disease - February 2010
Sexual Function in Women Receiving Maintenance Dialysis - Abstract from Hemodialysis International. - January 2010
Pennsylvania Man Overcomes Cancer and Kidney Transplant To Compete in Winter World Transplant Games - Article from Lehigh Valley Live. - January 31, 2010
Reports Says N. Korean Leader Kim Jong-il 'Undergoing Regular Kidney Dialysis' - Article from Chosun.com. - January 29, 2010
Even Mild Kidney Disease Deteriorates a Child's Quality of Life - Press release from Johns Hopkins Medical Institutions. - January 28, 2010
Gout and CKD - A New Era of Hope - Article from Peter Laird, MD on KidneyTimes™. - January 2010
Severe Complications of Diabetes Higher in Depressed Patients - Press release from the University of Washington. - January 27, 2010
Transitioning out of Childhood for Young People with CKD - KidneyTalk™ podcast from Renal Support Network. - January 26, 2010
More High Blood Pressure Worries: It's Linked to Dementia - Article from AP. - January 26, 2010
Medical Marijuana Patients Denied Organ Transplants - Blog from The Huffington Post. - January 25, 2010
In related news: Los Angeles to close hundreds of marijuana vendors
Doctors Delay Talking About End-Of-Life Care - Article from Kaiser Health News. - January 25, 2010
Arranging Your Life When Dialysis Comes Home - Article from Home Dialysis Central. - January 20, 2010
Sleep Quality, Mood, Alertness and Their Variability in CKD and ESRD - Issue-in-Progress abstract from Nephron Clinical Practice. - January 20, 2010
Jack Black Gives Back at RSN Renal Teen Prom - Press release and video from ABC7. - January 18, 2010

PPS Comments to Medicare show the way forward: higher dialysis doses for better health - Blog entry from DSEN. - January 14, 2010
READ THESE PATIENT COMMENTS!! Summary provided by Bill Peckham from Dialysis from the Sharp End of the Needle.
Bill's comments:
"Story, after story of being cured of the symptoms of too little dialysis. All of the symptoms that people mistakenly attribute to dialysis, are reported cured. And not one of these commentators talk of urea."
"There are over 90 times as many people on conventional incenter dialysis as are on frequent home hemo, yet I can think of very few who, by any stretch, wrote to endorse their care. Only those at home, dialyzing more frequently, were moved to do so. They know the truth, their stories tell of a better way."

End-of-Life Care Preferences and Needs: Perceptions of Patients with Chronic Kidney Disease - Press release and CJASN Express abstract. - January 14, 2010

End of Life Wishes May Not Be Guiding Principle - Article from MedPage Today. - January 14, 2010

NxStage Wonkery on the Freedom Cruise - Blog entry by Bill Peckham from Dialysis from the Sharp End of the Needle. - January 13, 2010

Foreign Travel on Dialysis Is Something You Can Do - Blog entry by Bill Peckham from Dialysis from the Sharp End of the Needle. - January 10, 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 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!
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
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)

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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