RenalWEB Home Page
Last Updated 09/10/17

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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Steps Toward Sustainable Change in Advance Care Planning - Free, Full-Text Article from American Journal of Kidney Diseases. - September 2017

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Physical Activity in End-Stage Renal Disease Patients: The Effects of Starting Dialysis in the First 6 Months after the Transition Period - Free, Full-Text Article from Nephron. - September 2017

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A Silly Web Series with a Serious Aim: to Find Gene a Kidney Donor - Article From STAT. - September 8, 2017

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Meta-Analysis of Cognitive Functioning in Patients Following Kidney Transplantation - Free, full-text, Advance Article from NDT. - September 7, 2017

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Intimidated Patients May Act like Hostages - Article from Reuters Health News. - September 7, 2017

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Development and Validation of a Prediction Model for Loss of Physical Function in Elderly Hemodialysis Patients - Advance Article from NDT. - September 5, 2017

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Uremic Restless Legs Syndrome Pleads "Not Guilty" - Free, full-text, Issue-in-Progress editorial and related abstract from American Journal of Nephrology. - September 5, 2017

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Scientists Find Link between Cognitive Fatigue and Effort and Reward - Press release from the Kessler Foundation. - September 5, 2017

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Free, Full-Text Articles from Annals of Internal Medicine - September 5, 2017

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Longest-Surviving Person with Kidney Failure Passes Away - Notice from the International Society of Nephrology. 2010 article on Dr. Robin Eady from The Seattle Times. Also see his mention and picture in "The Record Holders" (The Seattle Programme) from the History of Nephrology web site. - September 4, 2017

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'He's Going To Die': Dialysis Patients Airlifted from Flooded Town near Beaumont - Posting from Dallas News blog. - September 1, 2017

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For Vulnerable Older Adults, a Harrowing Sense of Being Trapped - Article from The New York Times. (Sept. 1). - September 1, 2017

"More than 100 dialysis centers in the regions are closed, and in some cases patients have not been able to get transportation to the few that are open. Patients are separated from caregivers by flooded highways. And at the downtown convention center here that shelters thousands of people, a crew of volunteer doctors has been treating evacuees around the clock."

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Lifestyle Factors May Affect How Long Individuals Live Free of Disability - September 1, 2017

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Association between Testosterone and Mortality Risk among U.S. Males Receiving Dialysis - Issue-in-Progress abstract from American Journal of Nephrology. - September 1, 2017

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Free, Full-Text, CJASN Express Articles - August 2017

Editor's note: Two big problems here. The first is that this is just an expansion of the sick-patient model of care using clinical trials. This approach will not drive rapid innovations in dialysis care or changes in technology. What is needed instead is a well-patient model that responds directly and immediately to patient needs. The second problem is that without a significant financial incentive, the large for-profit providers will not embrace change in any meaningful way. In the U.S., payment drives practice.
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Patterns of NSAIDs Use and Their Association with Other Analgesic Use in CKD - CJASN Express abstract. - August 2017

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Causes and Management of Postrenal Transplant Diarrhea: an Underappreciated Cause of Transplant Associated Morbidity. - Published Ahead-of-Print abstract from Current Opinion in Nephrology and Hypertension. - August 31, 2017

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For Houston Dialysis Patients, Getting Treatment during the Disaster Means Life or Death - Video and article from PBS NewsHour. - August 30, 2017

Editor's note: Is KCER even mentioned — or relevant?

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Lower BP Targets Preserve Cognition in Older Adults - Article from Medscape Nephrology (registration required, but free). - August 30, 2017

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Pregnancy-Associated Plasma Protein A2 in Hemodialysis Patients: Significance for Prognosis - Free, Open Access, Issue-in-Progress article from Kidney and Blood Pressure Research. - August 30, 2017

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Tweets on Impact of Harvey/Katrina on Dialysis Patients - Observations by journalist Maryn McKenna. - August 29, 2017

Editor's note: Why doesn't any U.S. nephrologist articulate this?

Instead, U.S. nephrology is letting KCER take the lead. Is KCER more concerned with protecting business interests than patients' interests? Keeping information hidden from view only protects the kind of decision making that has led to higher mortality and hospitalization rates at large for-profit dialysis providers for the last 14 years (USRDS data).

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ASN Supports Hurricane Harvey Kidney Patient Relief Efforts - Press release from the American Society of Nephrology. - August 29, 2017

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When a Fellow Dialysis Patient Died, I Feared I Was Next - Article from The Fresno Bee. - August 29, 2017

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Self-Identifying As Disabled and Developing Pride in Disability Aid Overall Well-Being - August 28, 2017

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More Than Half of Americans Will Need Nursing Home Care - Article from HealthDay. - August 28, 2017

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Therapy Dogs in Dialysis - YouTube video from DCI Yorktown (NY). - August 27, 2017

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Pregnancy and the Kidney Transplant Recipient- Published Ahead-of-Print Abstract from Current Opinion in Nephrology and Hypertension. - August 24, 2017

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Usefulness of Questionnaires on Advance Directives in Hemodialysis Units - Advance Article Abstract from NDT. - August 23, 2017

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Two Studies Support Intensive Blood Pressure Control for Long-Term Health, Quality of Life - Press release from University of Utah Health. Article abstract and special article abstract from The New England Journal of Medicine. Article from HealthDay. - August 23, 2017

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Life Expectancy for Patients from the Southeastern United States with IgA Nephropathy - 20-page pdf - Article in Press Abstract and Full-Text PDF from Kidney International Reports. - August 22, 2017

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Dying At Home In An Opioid Crisis: Hospices Grapple With Stolen Meds - Article from Kaiser Health News. - August 22, 2017

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Lower Blood Pressure Best for Seniors' Minds - Article from HealthDay. Free, full-text, New Online article from JAMA Neurology. Article from MedPage Today (registration required, but free). - August 21, 2017

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Intradialytic Cognitive and Exercise Training May Preserve Cognitive Function - Article in Press abstract and Open Access article (29-page pdf) from Kidney International Reports. - August 19, 2017

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2017 Update on Pain Management in Patients with Chronic Kidney Disease - Free, full-text, Advance Article from Clinical Kidney Journal. - August 18, 2017

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Renal Allograft Histology at 10 Years After Transplantation in the Tacrolimus Era: Evidence of Pervasive Chronic Injury - Early View abstract from American Journal of Transplantation. - August 18, 2017

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Medicare Unveils ‘Skeletal’ Site For Hospice Comparison Shopping - Article from Kaiser Health News. - August 18, 2017

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Predictors of Health Deterioration Among Older Adults After 12 Months of Dialysis Therapy: A Longitudinal Cohort Study From New Zealand - Article in Press abstract from American Journal of Kidney Diseases. - August 17, 2017

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Young People with Chronic Illness More Likely to Attempt Suicide - Press release from the University of Waterloo. - August 17, 2017

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The Associations of Hemodialysis Access Type and Access Satisfaction with Health-Related Quality of Life - Articles in Press Abstract from Journal of Vascular Surgery. - August 16, 2017

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Lack of Sleep May Raise Child's Type 2 Diabetes Risk - Article from HealthDay. - August 15, 2017

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CDC: Antidepressant Use Up 65% over 15 Years - August 15, 2017

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Sharing Experiences of Illness and Care - Free, full-text, New Online viewpoint article from JAMA Internal Medicine. - August 14, 2017

"... the concept of patient experience should be separated from the concept of patient satisfaction. Patient experience refers to the totality of the person's care, including appropriateness of care and the degree to which it meets the multiple goals of each individual, not merely the immediate satisfaction it provides. For example, it is easy to improve satisfaction through excessive tests, prescriptions, and procedures."
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Free, Open Access Articles from Renal Failure - August 14, 2017

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Considerations on the Off-Label Use of Ketamine as a Treatment for Mood Disorders - Free, full-text, New Online viewpoint article from the Journal of the American Medical Association. - August 14, 2017

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End-Of-Life Advice: More Than 500,000 Chat On Medicare's Dime - Article from Kaiser Health News. - August 14, 2017

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A Patient-Centered Approach to Measuring Quality in Kidney Care: Patient Reported Outcome Measures and Patient-Reported Experience Measures - Published Ahead-of-Print abstract from Current Opinion in Nephrology and Hypertension. - August 12, 2017

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Marijuana and Cannabinoids in ESRD and Earlier Stages of CKD - Article in Press Abstract from American Journal Of Kidney Diseases. - August 12, 2017

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Death Rate for People with Heart Disease and Depression Double Than for Non-Depressed Heart Patients - Press release from Intermountain Medical Center. - July 27, 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
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Sleep Disorders in People Who Have Chronic Kidney Disease - KidneyTalk podcast from Renal Support Network. - May 2017

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
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 Network 18 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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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.
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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
Care-Partners for Home Dialysis Face Book discussion page

Communications from the Heart web site by Lori Hartwell

blue ball Home Dialyzors United Face Book discussion page
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
blue ball HealthUnlocked web site - Ask questions. Get answers. Connect with others like you.
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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Except where noted, no information within the RenalWEB web site can be copied, duplicated, or reproduced in any form without the express written consent of RenalWEB.