RenalWEB Home Page
Last Updated 10/21/18

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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Improve Caregiver Patient Quality Time - Article from Healio. - October 2018

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Age-Related Macular Degeneration in Chronic Kidney Disease: A Meta-Analysis of Observational Studies - Online First abstract from American Journal of Nephrology. - October 18, 2018

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Spirituality, Coping, and Thriving with Home Dialysis - Posting from the KidneyViews blog. - October 18, 2018

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Latest Generation of the Artificial Wearable Kidney Is Focused on Quality of Life - Article from Healio. - October 17, 2018

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In Puerto Rico, Patients Are Still Waiting For A Dialysis Clinic That May Never Come - Article from The Huffington Post. - October 16, 2018

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Factors Linked with Well-Being and Medication Adherence in Young Adults with Kidney Failure - Press release and free, full-text, CJASN Published Ahead of Print articles - October 16, 2018

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For-Profit Nursing Home Residents More Likely to Be Diagnosed with Neglect Issues - Press release from University of Illinois at Chicago. - October 16, 2018

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As U.S. Suicides Rates Rise, Hispanics Show Relative Immunity - Article from Kaiser Health News. - October 15, 2018

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Sex Hormones and Their Influence on Chronic Kidney Disease - Published Ahead of Print abstract from Current Opinion in Nephrology and Hypertension. - October 12, 2018

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The Impact of CKD on Cognition: An Inside and Outside View - Posting from the KidneyViews blog. - October 11, 2018
Excerpt of comment by Dr. John Agar:
"Allowing TIME for slow diffusion is critical, yet we deploy dialysis by ‘blitzkreig’, rather than by ‘assimilation’.
"Using a smaller surface area dialyser for our nocturnals also seems to work well ... and we do that, pretty much routinely.
"So, Henning, there is your dialysis fog, in a nutshell.
"Have we researched this? ... No!
"Do we understand this any better than in the days when disequilibration was common? ... No!
"Am I embarrassed, and ashamed of myself and my colleagues on your behalf? ... Yes!"
Editor's note: Until renal rehabilitation is recognized — and finally established — as an essential part of dialysis care, the vast majority of patients will continue to live in the "fog."

Why has this field of medicine seen virtually no improvements in the outcomes that matter to the patients?

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Helping Older Kidney Patients Make Fundamental Care Decisions - National Kidney Foundation press release on a new project launched in conjunction with Tufts University. - October 10, 2018

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Online Positive Psychology Exercises Improve Quality of Life in Hemodialysis Patients - Press release from University of Illinois at Urbana-Champaign. Abstract from Social Work in Health Care. - October 9, 2018

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Over 8000 Yemeni Dialysis Patients on Verge of Death: Health Minister - Article from PressTV (Iran). - October 9, 2018

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Depressive Symptoms Associates with Race and All-Cause Mortality in Patients with CKD - (26-page PDF) - Articles in Press Abstract and Full-Text PDF from Kidney International Reports. - October 9, 2018

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Tina Turner Pens Emotional Book Detailing Kidney Failure and Transplant - October 5, 2018

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Puerto Rico Patients to Get Kidney Dialysis in Vieques — a Year after Hurricane - Article and video from Miami Herald. - October 4, 2018

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Psychosocial Health and Lifestyle Behaviors in Young Adults Receiving Renal Replacement Therapy Compared to the General Population: Findings From the SPEAK Study - Free, Open Access, Article in Press from American Journal of Kidney Diseases. - October 4, 2018

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Utility of Regular Management of Physical Activity and Physical Function in Hemodialysis Patients - Free, Open Access, Online First Article from Kidney & Blood Pressure Research. - October 4, 2018

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An Open and Honest Discussion about Addiction - KidneyTalk podcast from Renal Support Network. - October 3, 2018

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New Geriatrics Research Demonstrates the Feasibility, and the Promise, of Care Based On Patient Priorities - Press release from NYU Langone Health. - October 3, 2018

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Life-Saving Dialysis at 19 Leads to Career in Nursing - Article from The Journal-News (Hillsboro, IL). - October 3, 2018

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Researcher: 'Selfie Deaths Have Become a Major Public Health Problem' - Article from The Hill. - October 3, 2018

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More Research on 'Dying Healthy' Will Also Help Us Live Healthier - Article from STAT. - October 3, 2018

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Baxter, Mayo Clinic Ink Collaborative Deal To Develop US-Based Renal Care Center - Article from Mass Device. Press release from the Mayo Clinic and Baxter Renal Care Services. - October 2, 2018

"... new collaboration to develop a renal care center of excellence in the U.S. The center will serve patients across the continuum of renal care — from chronic kidney disease (CKD) management through transplant — and drive better patient outcomes."

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Academic Achievement and Employment in Young Adults with End-Stage Kidney Disease - Early View abstract from Journal of Renal Care. - October 2, 2018

Editor's note: It is time to differentiate between the different standards of dialysis care which result in either patient debilitation, habilitation (dialysis is my job), or rehabilitation.

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Diabetes, Dementia Can Be Deadly Combination - Article from HealthDay. - October 2, 2018

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Testosterone Deficiency, Frailty and Muscle Wasting in CKD: a Converging Paradigm? - Free, full-text, Advance Article from NDT. - October 1, 2018

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Towards Adulthood with a Solitary Kidney - First Online Abstract from Pediatric Nephrology. - October 1, 2018

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Dialysis and Pregnancy - Article from Kidney News Online. - September 2018

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‘Contraception Deserts’ Likely To Widen Under New Trump Administration Policy - Article from Kaiser Health News. - September 28, 2018

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Deaths of Despair in the Era of Donald Trump: the Opioid Epidemic Is Just Part of the Problem - Press release from Columbia University's Mailman School of Public Health. - September 27, 2018

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People Can Die from Giving up the Fight - Press release from the University of Portsmouth. - September 27, 2018

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I Am Brand-New to This Dialysis, and Having a Very Rough Time; Are Many of You Able to Work Full Time and Do Dialysis? - Posting from the Dialysis Discussion Uncensored Facebook page. - September 26, 2018

Editor's note: As long as U.S. nephrology refuses to recognize the necessity of establishing a renal rehabilitation subspecialty, patients will be unsupported and unheard in their efforts to remain employed. After 50 years, we still have no evidence of what "works" for patients and what does not.

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New Kidney Care Companies Intend To Make Money by Keeping Patients Out of the Dialysis Chair - Article from FierceHealthCare. - September 26, 2018

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The Incidence Prognosis and Risk Factors of Cognitive Impairment in Maintenance Haemodialysis Patients - Online First Abstract from Blood Purification. - September 25, 2018

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Video Presentations from 2018 CANN-NET Symposium on Managing Vexing Symptoms for Patients with Advanced Kidney Disease - 5 videos from the Canadian Kidney Knowledge Translation and Generation Network. 2018

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A Dialysis Patient Helps Others as a Peer Mentor - Press release from the National Kidney Foundation. - September 2018

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Transplant Games S-P-I-R-I-T - KidneyTalk podcast from Renal Support Network. - September 24, 2018

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Lack Of Medications Threatens Lives Of 425 Kidney Patients in Gaza - September 24, 2018

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Conventional Dialysis in the Elderly: How Lenient Should Our Guidelines Be? - Early View abstract from Seminars in Dialysis. - September 21, 2018

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Development and Preliminary Validation of a Depression Assessment Tool for Maintenance Hemodialysis Patients - Early View Abstract from Therapeutic Apheresis and Dialysis. - September 21, 2018

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Health-Related Quality of Life Compared between Kidney Transplantation and Nocturnal Hemodialysis - Free, Open Access Article from PLOS ONE. - September 20, 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

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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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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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