RenalWEB Home Page
Last Updated 4/21/19

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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Pruritus and Patient Reported Outcomes in Non-Dialysis CKD - CJASN press release; article from HealthDay - Published Ahead of Print CJASN Articles. - April 2019

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Physical Activity After Solid Organ Transplantation — Comprehensive Guidance Is Needed to Advance Future Research Effort - Free, Full-Text Article from Transplantation. - April 2019

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Laugh Out Loud Hemodialysis (LOL-HD): Improving the Dialysis Experience at Satellite Healthcare - Posting from the KidneyViews blog. - April 18, 2019

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How Do Multiple Symptoms Really Affect Older Adults? - Free, full-text, New Online article from the Journal of the American Medical Association. - April 17, 2019

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Intensive BP Lowering May Up Cognitive Decline in Elderly - Article from HealthDay. - April 16, 2019

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Replacing 30 Minutes of Sitting With Activity May Cut Mortality - Article from HealthDay. - April 16, 2019

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Predictors of Short-Term Successful Discontinuation of Continuous Renal Replacement Therapy: Results from a Prospective Multicenter Study - Free, Open Access article from BMC Nephrology. - April 15, 2019

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How To Tell the Difference between Kidney Pain and Back Pain - Article from MedicalNewsToday. - April 15, 2019

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"How To Manage the Symptoms of ESKD" by Prof Sara Davison, University of Alberta, Canada - Presentation at ISN World Congress. Tweet thread by Sourabh Sharma, MD. - April 14, 2019

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Person-Centered Care for Older Adults With Kidney Disease: Core Curriculum 2019 - Free, Full-Text, Articles in Press from American Journal of Kidney Diseases. - April 11, 2019

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Once-Weekly Ketamine Infusions Keep Resistant Depression at Bay - (Registration required, but free.) Article from Medscape Medical News. - April 11, 2019

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Lower Pension, Shorter Life - April 11, 2019

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Psychoactive Medications and Adverse Outcomes Among Older Adults Receiving Hemodialysis - (Registration required, but free.) Article from Journal of the American Geriatrics Society via Medscape Nephrology. - April 11, 2019

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Kidney Disease Triggers Cognitive Impairment, Even in Early Stages - Press release from ERA-EDTA. - April 10, 2019

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Research Underscores Value of Cognitive Training for Adults with Mild Cognitive Impairment - Press release from Center for Brainhealth. - April 10, 2019

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Are Dialysis Patients Too Frail to Exercise? - Early View abstract from Seminars in Dialysis. - April 10, 2019

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People With Obesity Are Blatantly Dehumanized - Article from HealthDay. - April 10, 2019

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Early View Abstracts from Seminars In Dialysis - April 9-10, 2019

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Mild Cognitive Impairment and Kidney Disease: Clinical Aspects - Free, Full-Text, Advance Articles from NDT. - April 9, 2019

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Accuracy of Patient Health Questionnaire-9 (PHQ-9) for Screening to Detect Major Depression: Individual Participant Data Meta-Analysis - Free, full-text article from The BMJ. - April 9, 2019

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Randomized Controlled Trial of Exercise in Chronic Kidney Disease— the RENEXC Study - Free, Open Access, Article in Press from Kidney International Reports. - April 9, 2019

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Lethal Plans: When Seniors Turn To Suicide In Long-Term Care - Article from Kaiser Health News. - April 9, 2019

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Depression in Primary Care: Part 1—Screening and Diagnosis - State of the Art Review from The BMJ. - April 8, 2019

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Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies - Article in Press from American Journal of Kidney Diseases. - April 5, 2019

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Swallowable Vibrating Pill Shakes Faecis to Relieve Constipation - Article from MedGadget. - April 4, 2019

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Esketamine and Psychedelics Will Require Restructuring Mental Health Care Visits - Article from STAT. - April 4, 2019

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Days like Today Are the Reason That I Skip (Dialysis)… - Posting with over 100 comments from the Dialysis Discussion Uncensored Facebook page. - April 3, 2019

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Online First Abstracts from Blood Purification - April 3, 2019

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Identifying Needs for Self-Management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study - Article in Press abstract from American Journal of Kidney Diseases. - April 2, 2019

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Under-the-Tongue Allergy Pills Replacing Shots for Many - Article from HealthDay. - April 2, 2019

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Reimagining Health—Flourishing - Free, full-text, New Online viewpoint article from the Journal of the American Medical Association. Related article from Health Affairs. - April 1, 2019

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Relationships between Illness Representations, Physical Activity and Depression in Chronic Kidney Disease - Early View Abstract from Journal of Renal Care. - April 1, 2019

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Barriers and Facilitators for Engagement and Implementation of Exercise in End-Stage Kidney Disease: Future Theory-Based Interventions Using the Behavior Change Wheel - Early View Abstract from Seminars in Dialysis. - April 1, 2019

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"I Won't Let Kidney Disease Define Me or Stop Me Achieving My Dreams" - Article from Kidney Research UK. - March 2019

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Studies Examine Ways to Assess Quality of Life in Patients with Kidney Disease - Press release and Published Ahead of Print JASN abstracts from the American Society of Nephrology  - March 2019

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Published Ahead of Print CJASN Abstracts - March 2019

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Addressing the Caregiving Crisis - Article from the Chronic Disease Coalition. - March 29, 2019

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Quality of Life after the Initiation of Dialysis or Maximal Conservative Management in Elderly Patients: a Longitudinal Analysis of the Geriatric Assessment in OLder Patients Starting Dialysis (GOLD) Study - Free, Open Access Article from BMC Nephrology. - March 29, 2019

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Vision Impairment in CKD Patients: Epidemiology, Mechanisms, Differential Diagnoses, and Prevention - Article in Press abstract from American Journal of Kidney Diseases. - March 28, 2019

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Additional Hemoperfusion Is Associated with Improved Overall Survival and Self-Reported Sleep Disturbance in Patients on Hemodialysis - OnlineFirst abstract from The International Journal of Artificial Organs. - March 28, 2019

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Brain White Matter Microstructure in End-Stage Kidney Disease, Cognitive Impairment, and Circulatory Stress - Early View Abstract from Hemodialysis International. - March 28, 2019

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Religiosity, Spirituality and Quality of Life of Dialysis Patients: a Systematic Review - First Online abstract from International Urology and Nephrology. - March 27, 2019

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Intradialytic Virtual Reality Exercise: Increasing Physical Activity through Technology - Early View abstract from Seminars in Dialysis. - March 27, 2019

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The Uncertain Effect of Financial Incentives to Improve Health Behaviors - Free, full-text, viewpoint article from the Journal of the American Medical Association. Article from HealthDay on Workplace Wellness Programs. - March 25, 2019

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Working on Dialysis - KidneyTalk podcast from Renal Support Network. - March 25, 2019

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Improved Detection and Evaluation of Depression in Patients with Chronic Kidney Disease: Validity and Reliability of Screening (PHQ-2) and Diagnostic (BDI-FS-Fr) Tests of Depression in Chronic Kidney Disease - Free, full-text, Online First article from Kidney Diseases. - March 25, 2019

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Sleep Disturbance among Malaysian Patients with End-Stage Renal Disease with Pruritus - Free, Open Access Article from BMC Nephrology. - March 25, 2019

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Early View Abstracts from Seminars In Dialysis - March 24, 2019

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Postings from the Dialysis Discussion Uncensored Facebook Page:  - March 23-24, 2019

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Patient Comfort: Dialysis vs. Cancer Treatment - Posting from the KidneyViews blog. - March 21, 2019

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Chronically Heal - Article on original documentary by KSLA (New Orleans). Patients explain difficulties of living without health insurance in new documentary. - March 21, 2019

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Treating Symptoms to Improve the Quality of Life in Patients on Chronic Hemodialysis - Free, full-text, First Online article from International Urology and Nephrology. - March 21, 2019

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Psychosocial Considerations and Recommendations for Care of Pediatric Patients on Dialysis - Free, full-text, First Online article from Pediatric Nephrology. - March 20, 2019

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Design and Methodology of the Impact of HemoDiaFIlTration on Physical Activity and Self-Reported Outcomes: a Randomized Controlled Trial (HDFIT trial) in Brazil - Free, Open Access Article from BMC Nephrology. - March 20, 2019

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"Exercise during Hemodialysis and Health Promoting Behaviors: a Clinical Trial" - Free, Open Access Article from BMC Nephrology. - March 19, 2019

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Comparing the Effectiveness of Depression Treatments for Patients Undergoing Maintenance Hemodialysis - Free, full-text, Summary for Patients from Annals of Internal Medicine. - March 19, 2019

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Sobering Reminder of the Perceived Quality of Life among Our Pediatric Patients on Dialysis - Tweet by Michelle Starr. - March 17, 2019

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Identifying Important Outcomes for Young People With CKD and Their Caregivers: A Nominal Group Technique Study - Article in Press abstract from American Journal of Kidney Diseases. - March 15, 2019

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Family Involvement in Decisions to Forego or Withdraw Dialysis: A Qualitative Study of Nephrologists in the United States and England - Free, full-text, Article in Press from Kidney Medicine. - March 14, 2019

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Older Adults with Multiple Chronic Illnesses - Press release from the American Geriatrics Society. - March 14, 2019

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Chronic Pain Following Laparoscopic Living-Donor Nephrectomy: Prevalence and Impact on Quality of Life - Accepted Article abstract from American Journal of Transplantation. - March 14, 2019

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Transitional Care Units Set Patients up for Successful Dialysis - Article from Healio. - March 13, 2019

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Lights Go Out on Venezuela's Kidney Patients - March 12, 2019

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PDI in Press Abstracts - March 9, 2019

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How Can We ASCEND from the Depths of Depression? - Nephrology Journal Club chat scheduled for Tuesday, April 9, 9 PM ET. - February 26, 2019

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Effect of Chronic Kidney Disease on Progression of Clinical Attachment Loss in Older Adults: a 4-Year Cohort Study - Early View abstract from Journal of Periodontology. - February 2, 2019

 
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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)
blue ball Understanding restless legs syndrome Mayo Clinic Q and A
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

newDepression in Primary Care: Part 1—Screening and Diagnosis - State of the Art Review from The BMJ.

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

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A Prescription for Resilience - KidneyTalk podcast from Renal Support Network. - June 2018

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!
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A Best Practice Position Statement on Pregnancy after Kidney Transplantation: Focusing on the Unsolved Questions. The Kidney and Pregnancy Study Group of the Italian Society of Nephrology - Free, Open Access, First Online article from Journal of Nephrology. - June 14, 2018

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

End-of-Life Resources from the Coalition for Supportive Care of Kidney Patients
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Part 1: Facing Your Biggest Life Challenges - 8 Steps to Recovery - Posting from the KidneyViews blog.

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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
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Living the Fullest Life Possible with Kidney Disease – Part One - KidneyTalk podcast from Renal Support Network

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
Care-Partners for Home Dialysis Face Book discussion page

Communications from the Heart web site by Lori Hartwell

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I Hate Dialysis web site
I Hate Dialysis Face Book discussion page
Kidney Disease, Dialysis, and Transplantation Face Book discussion page
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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

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
 
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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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