RenalWEB Home Page
Last Updated 10/22/17

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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Palliative Nephrology: Time for New Insights - Free, Full-Text Article from American Journal Of Kidney Diseases. - November 2017

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Pollution Linked to One in Six Deaths - Articles from the BBC and NPR. - October 20, 2017

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2 Strangers, A 6-Page List And A Plan Hatched To Help Puerto Rico - Article from NPR. - October 19, 2017
"Elizabeth Rodríguez Santana, 63, is one of them. She suffers from acute kidney failure and she's been on dialysis for nine years. Hurricane Maria shut down the clinic in Mayagüez where she received treatment three times a week, four hours a pop. There were no doctors at the clinic even when it reopened, says Rodríguez Santana. She says she went days without treatment and then she got an appointment two months out. While she's desperately trying to find treatment on the island, her daughter in Jacksonville, Fla. was desperately working the phones trying to get Rodríguez Santana evacuated to the mainland."

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Comparison of Quality of Life in Patients Undergoing Hemodialysis and Peritoneal Dialysis: a Systematic Review and Meta-Analysis - Free, Open Access, Issue-In-Progress Article from Kidney & Blood Pressure Research. - October 19, 2017

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Sociodemographic, Psychologic Health, and Lifestyle Outcomes in Young Adults on Renal Replacement Therapy - CJASN Express Abstract. - October 19, 2017

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Reflux Episodes Spike BP in People With GERD and Hypertension - Article from Medscape Nephrology (registration required, but free). - October 19, 2017

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Walking below Minimum Recommended Levels Linked to Lower Mortality Risk - October 19, 2017

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Helping Dialysis Patients Gain Independence - Article from Nephrology News & Issues. - October 18, 2017

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Ethics and the Legalization of Physician-Assisted Suicide: An American College of Physicians Position Paper - Free, full-text, position paper from Annals of Internal Medicine. - October 17, 2017

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Infrequent Provision of Palliative Care to Patients with Dialysis-Requiring AKI - CJASN Express abstract. - October 17, 2017

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Keeping Your Job When You Need Dialysis - Article from Home Dialysis Central. - October 55, 2017

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Johns Hopkins Finds Training Exercise That Boosts Brain Power - October 17, 2017

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Family Members Play Important Role in Managing Chronic Illness - Press release from Penn State. - October 16, 2017

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Emory Hospital Won't Let Dad Donate Kidney to His Sick 2-Year-Old Son Because of Gun Arrest - Posting from the Hit & Run Blog. - October 16, 2017

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The Association of Obstructive Sleep Apnea and Renal Outcomes — A Systematic Review and Meta-Analysis - Free, Open Access Article from BMC Nephrology. - October 16, 2017

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Skimping on Sleep May Contribute to Gestational Diabetes - October 16, 2017

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Inpatient Satisfaction Improved by Five-Minute Intervention, Study Finds - Press release from University of Virginia Health System. - October 16, 2017

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Peritoneal Dialysis Is Associated with Better Cognitive Function Than Hemodialysis over a One-Year Course- Articles in Press Abstract from Kidney International. - October 14, 2017

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Restless Legs Syndrome Study Identifies 13 New Genetic Risk Variants - October 13, 2017

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Gene’s “Big Dumb Kidneys” - KidneyTalk podcast from Renal Support Network. - October 12, 2017

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Brief Mindfulness Meditation for Depression and Anxiety Symptoms in Patients Undergoing Hemodialysis - CJASN Express Abstract. - October 12, 2017

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'Ridiculously Healthy' Elderly Have the Same Gut Microbiome As Healthy 30-Year-Olds - October 11, 2017

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In Oregon, End-of-Life Wishes Are Just A Click Away - Article from Kaiser Health News. - October 10, 2017

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Study Examines Racial Differences in Quality of End-Of-Life Care - Press release and New Online abstract from JAMA Internal Medicine. - October 9, 2017

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Following Disaster Teams In Puerto Rico - Link to article and audio report from NPR. - October 5, 2017
"Puerto Rico's death toll from Hurricane Maria has jumped to 34 because of the "indirect deaths" from heart attacks and dialysis failure."

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One Hour of Exercise a Week Can Prevent Depression - October 3, 2017

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End-of-Life Care Among Immigrants — Disparities or Differences in Preferences? - Free, full-text, New Online editorial and related article from the Journal of the American Medical Association. - October 2, 2017

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PDI in Press Abstracts - September 2017

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Older Adults with Chronic Kidney Disease (CKD) Report More Disability than Older Adults Without CKD - Report from the CDC 's Chronic Kidney Disease Surveillance System. - September 2017

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Renal Support Network's Annual Essay Contest Winners - The theme this year was "Describe a positive decision that you have made about your healthcare." - September 2017

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Articles from ASN's Kidney News Online - September 2017

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Fear after Maria as Dialysis Patients in Puerto Rico in 'Desperate Need' of Help - Article from WJLA (Washington, DC). - September 29, 2017

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For Dialysis Patients, Hurricanes Are A Race Against The Clock For Survival - Article from WLRN Miami/S.Florida. - September 27, 2017

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Researchers Uncover the Source of Diabetic Pain - September 27, 2017

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(No Dialysis) Treatment Helps Kidney-Failure Patients Preserve Quality of Life - Article from Alberta Health Services. - September 26, 2017

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Mild Cognitive Impairment in Older Adults with Predialysis Patients with Chronic Kidney Disease: Prevalence and Association with Physical Function - Accepted Article abstract from Nephrology. - September 26, 2017

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Itching: Another Patient Commentary - Posting from the Nephrology Journal Club. - September 25, 2017

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How Patient Preferences Contribute to Regulatory Decisions for Medical Devices - Article from FDA Voice. - September 25, 2017

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Should You Just Scratch the Itch? - Nephrology Journal Club chat scheduled for Wednesday Sep 27. Related patient commentary videos. - September 22, 2017

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Narrow Networks Get Even Tighter When Shopping For Mental Health Specialists - Article from Kaiser Health News. - September 22, 2017

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Puerto Rico's Power Outage Could Be A Death Sentence For Many - Article from The Huffington Post. 5-day forecast cone for Hurricane Maria. Puerto Rico and the Virgin Islands are part of ESRD Network 3. - September 21, 2017

In one instance, 89 kidney disease patients at Puerto Rico's Fresenius Kidney Care clinic were transferred to the Fresenius location in Miami to continue their lifesaving dialysis treatment after Maria hit. Those same 89 patients had just been transferred from Saint Thomas, part of the U.S. Virgin Islands, after Hurricane Irma pummeled that island earlier this month.

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Free, Full-Text, News Online Articles from The Journal of the American Medical Association - September 21, 2017

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Antidepressants Tied to a Significantly Increased Risk for Death - (Registration required, but free.) Article from Medscape Nephrology. - September 21, 2017

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Ethics and the Legalization of Physician-Assisted Suicide: An American College of Physicians Position Paper - Free, full-text Latest Article from Annals of Internal Medicine. - September 19, 2017

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International Comparisons of Prevalence, Awareness, and Treatment of Pruritus in People on Hemodialysis - Free, full-text CJASN Express article. - September 18, 2017

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Both High, Low Levels of Magnesium in Blood Linked to Risk of Dementia - September 15, 2017

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Impaired Sleep May Have Serious Health Consequences for Kidney Disease Patients - Press release and JASN Express abstract from the American Society of Nephrology. - September 14, 2017

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Diabetes Threatens Kidneys, Vision of Millions of Americans - Article from HealthDay. - September 13, 2017

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Caregiver Fatigue Increases Healthcare Costs - Article from HealthLeaders Media. - September 13, 2017

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Puerto Rico Takes Post-Irma Dialysis Patients - Article from MedPage Today (registration required, but free). - September 12, 2017

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Effect of Renal Transplantation on Cognitive Function in Hemodialysis Patients: a Longitudinal Study - First Online abstract from International Urology and Nephrology. - September 12, 2017

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Preventing Anxiety: It Can Be Done - Article from Medscape Nephrology (registration required, but free). - September 12, 2017

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Cost is Top Reason for Not Filling a Medication Prescription - September 12, 2017

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The Impact of Frailty on Outcomes in Dialysis - Published Ahead-of-Print Abstract from Current Opinion in Nephrology & Hypertension. - September 11, 2017

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Efficacy of Blood Flow Restriction Exercise during Dialysis for End Stage Kidney Disease Patients: Protocol of a Randomized Controlled Trial - Free, Open Access article from BMC Nephrology. - September 11, 2017

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Sitting Most of the Day May Lead to an Early Grave - Articles from Reuters and HealthDay. Latest Article abstract and full-text Summary for Patients from Annals of Internal Medicine. - September 11, 2017

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Physical Activity Dose for Hemodialysis Patients: Where to Begin? Results from a Prospective Cohort Study - Article in Press abstract from Journal of Renal Nutrition. - September 8, 2017

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Heading Off The Dreaded Cramp! - Posting from the KidneyViews Blog. - September 7, 2017

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Free, Open Access Articles from PLOS ONE - September 6, 2017

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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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Returning to Work While on Dialysis - Press release from the National Kidney Foundation. - Spring 2012

 
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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

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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

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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