RenalWEB Home Page
Last Updated 04/17/18

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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Catheter-Based Renal Denervation As Therapy for Chronic Severe Kidney Related Pain - Free, Full-Text Article from NDT. - April 2018

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A Timely Evaluation of the Psychometric Properties of the KDQOL-36 - Free, Full-Text Article from American Journal Of Kidney Diseases. - April 2018

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Guinness World Record for Longest Time on Dialysis - Article from Hillingdon and Uxbridge Times (UK). - April 16, 2018

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So Just a Bit of Reflection Here... - Posting from the Dialysis Discussion Uncensored blog. - April 16, 2018

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Ketamine Has 'Fast-Acting Benefits' for Depression - Article from the BBC. - April 16, 2018

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Treatment of Depression in CKD Patients with an SSRI — Why Things Don't Always Turn Out as You Expect - Free, Full-Text, CJASN Express Article. - April 13, 2018

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Effect of Dialysis on Cerebral Blood Flow and Cognition - Article from Medscape Nephrology. Abstract from the Journal of the American Society of Nephrology. - April 13, 2018

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Combined Contribution of Reduced Functional Mobility, Muscle Weakness, and Low Serum Albumin in Prediction of All-Cause Mortality in Hemodialysis Patients: A Retrospective Cohort Study - Article in Press abstract from Journal of Renal Nutrition. - April 13, 2018

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Dialysis Patients (in Puerto Rico) are Still Trekking 12 Hours for Care After Hurricane Maria - Article from The Atlantic. - April 13, 2018

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Researchers: Screen Depressed Dialysis Patients for Suicidality - (Registration required, but free.) Article from MedPage Today. - April 12, 2018

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Factors Associated with Functional Performance among Patients on Hemodialysis in Taiwan - Issue-in-Progress Abstract from Blood Purification. - April 12, 2018

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Continuous Glucose Monitors Proven Cost-Effective, Add to Quality of Life for Diabetics - Press release from the University of Chicago Medical Center. - April 12, 2018

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Physicians' Political Preferences and the Delivery of End of Life Care in the United States: Retrospective Observational Study - Free, full-text article from The BMJ. - April 11, 2018

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Family Consultation to Reduce Early Hospital Readmissions among Patients with End Stage Kidney Disease—A Randomized Controlled Trial - CJASN Express Abstract. - April 10, 2018

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Risk Profile, Quality of Life and Care of Patients with Moderate and Advanced CKD : The French CKD-REIN Cohort Study - Advance Article Abstract from NDT. - April 9, 2018

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Breaking the Cycle of Functional Decline in Older Dialysis Patients - Early View abstract from Seminars in Dialysis. - April 5, 2018

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Health Service Utilization during the Last Year of Life: a Prospective, Longitudinal Study of the Pathways of Patients with Chronic Kidney Disease Stages 3-5 - Free, Open Access article from BMC Palliative Care. - April 5, 2018

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Dialysis Patient Needs vs. Social Worker Caseloads - Posting from the KidneyViews blog. - April 5, 2018

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Chronic Illnesses, Functional Limitations a Risk in Older Adults with Heart Failure - Press release from the American Geriatrics Society. - April 5, 2018

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Posttransplant Skin Conditions Vary Widely by Ethnicity - Article from Internal Medicine News. - April 4, 2018

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Turning Negatives into Positives When You're Chronically ill - Posting from the KevinMD blog. - April 4, 2018

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Sudden Loss of Wealth Associated with Increased Risk of Death - Press release and free, full-text article from the Journal of the American Medical Association. - April 3, 2018

Editor's note: Here's yet another reason to focus on patient employment and renal re/habilitation in dialysis care.

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HHS CTO: Opioids, Open Data, Kidney Disease Are Key Focus Areas for Department - Article from MobileHealthNews. - April 2, 2018

"Dialysis machines haven't innovated substantially in more than sixty years," he said. "Compare that to say oncology or cardiology, that have made amazing advances at the same time. My mom died of kidney disease, of end-stage renal she died in 2007. She was on dialysis for 14 years. Her treatment looked exactly the same on her last day as it did on her first day. No innovation in that that space in that time."

Editor's note: When there is no emphasis on improving patient employment or re/habilitation rates, there is little reason to seek patient feedback and improve dialysis technology.

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Cape Town (South Africa) Drought Limits People to 13 Gallons of Water a Day - Report from PBS News Hour. - March 31, 2018

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"I Wanted My Life To Have Some Meaning" - Posting from the Dialysis Discussion Uncensored Facebook Page. - March 30, 2018

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I Won't Let Kidney Disease Define Me or Stop Me Achieving My Dreams - Posting from the KidneyViews blog. - March 29, 2018

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Scrutinizing Medicare Coverage For Physical, Occupational and Speech Therapy - Article from Kaiser Health News. - March 29, 2018

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Self Managed Health Care Technology Should Consider Chronic Disease Patients' Values - Press release from Washington State University. - March 29, 2018

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Effects of Intradialytic Cycling Exercise on Exercise Capacity, Quality of Life, Physical Function and Cardiovascular Measures in Adult Hemodialysis Patients: a Systematic Review and Meta-Analysis - Advance Article abstract from NDT. - March 28, 2018

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Pregnancy Outcomes in French Hemodialysis Patients - Issue-in-Progress abstract from American Journal of Nephrology. - March 27, 2018

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Health-Related Quality of Life in End-Stage Renal Disease Patients: the Effects of Starting Dialysis in the First Year after the Transition Period - Free, Open Access, First Online article from International Urology and Nephrology. - March 26, 2018

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Positive Mindset Leads to Life's Purpose with CKD - Press release from the National Kidney Foundation. 

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As Trump Targets Immigrants, Elderly Brace To Lose Caregivers - Article from Kaiser Health News. - March 26, 2018

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Functional Impairment and Risk of Mortality in Patients on Chronic Hemodialysis: Results of the Lazio Dialysis Registry - First Online abstract from Journal of Nephrology. - March 23, 2018

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Socioeconomic Status, Noncommunicable Disease Risk Factors, and Walking Speed in Older Adults: Multi-Cohort Population Based Study - Free, full-text article from The BMJ. - March 23, 2018

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About Me: Before, During And After Starting Dialysis - Posting from the KidneyViews blog. - March 22, 2018

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Serum Bicarbonate Concentration and Cognitive Function in Hypertensive Adults - CJASN Express abstract. - March 22, 2018

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Depression Could Be a Risk Factor for A-Fib: Study - Article from HealthDay. - March 22, 2018

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Younger Dialysis Patients and Those With Depression More Likely to Struggle With Prescribed Treatment Regimen - Survey results from the American Kidney Fund. - March 21, 2018

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Islet Transplantation Improves Quality of Life for People with Hard-to-Control Type I Diabetes - Press release from the National Institutes of Health. - March 21, 2018

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Filling The Void: Making End-Of-Life Care A Medicare “Skilled Need” To Span The Spectrum Of Care Needed For High-Quality, End-Of-Life Care In The United States - Posting from the Health Affairs blog. - March 21, 2018

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NxStage Medical: NxStage PureFlow B Solution - FDA Product Recall Notices from Enforcement Report. - March 21, 2018

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Practice Pattern of Physician's Directions of Exercise Restriction in Patients with Chronic Kidney Disease: Results from the Chronic Kidney Disease Japan Cohort Study - Free, Open Access, First Online article from Clinical and Experimental Nephrology. - March 19, 2018

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The Patient CV - Tweet from Nikhil Shah. #patientCV. - March 16, 2018

"This is an absolutely wonderful idea! Nothing makes improves patient care more than knowing our patients' careers, lives and values better."

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The Burden of Out-Of-Pocket Costs for Canadians with Kidney Failure – 2018 - (10-page PDF) Report from the Kidney Foundation of Canada. - March 15, 2018

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I Will Not Let This Illness Define Me – Part 2 - Posting from the KidneyViews blog. - March 15, 2018

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Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis: A Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop Report - Article in Press abstract from American Journal of Kidney Diseases. - March 15, 2018

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Medicaid Work Requirements Could Be Disastrous for Chronic Disease Patients and Caregivers - Article from the Chronic Disease Coalition. - March 15, 2018

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"What Do You Need to Make Things Better?" — The Importance of Peer Support in Self Management of Chronic Diseases - Article from The BMJ. - March 14, 2018

"Peer support can offer a level of knowledge, understanding, and confidence in managing conditions that are impossible to get from doctors".

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Lifting Therapy Caps Is A Load Off Medicare Patients' Shoulders - Article from Kaiser Health News. - March 14, 2018

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The Relationship between Hydration Status, Male Sexual Dysfunction and Depression in Hemodialysis Patients - Full-text article from Therapeutics and Clinical Risk Management. - March 13, 2018

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Calendar Kids Art Contest - American Kidney Fund announcement. They must receive all artwork by March 23, 2018. - March 13, 2018

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Social Determinants of Health: Addressing Unmet Needs in Nephrology - Article in Press abstracts from American Journal of Kidney Diseases. - March 13, 2018

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Health Care Reform and EHR Design Should Be Built around Patients' Goals - Press Release from the American Academy of Family Physicians. - March 13, 2018

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Muscle Loss in Old Age Linked to Fewer Nerve Signals - March 12, 2018

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Menopause in CKD - Article in Press abstract from American Journal of Kidney Diseases. - March 9, 2018

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The Effect of Pregnancy on the Long-Term Risk of Graft Loss, Cardiovascular Disease and Death in Kidney Transplanted Women in Norway: a Retrospective Cohort Study - Online First abstract from Transplantation. - March 9, 2018

 
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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.
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
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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