RenalWEB Home Page
Last Updated 7/14/19

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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Free, Full-Text Articles from Journal of Nephrology - August 2019

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Early View Abstracts from Journal of Renal Care - July 11, 2019

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Does Dialysis Give You Memory Loss? - Posting and responses from the Dialysis Discussion Uncensored Facebook page. - July 10, 2019

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An Exploration of Symptom Burden and Its Management, in Saudi Arabian Patients Receiving Hemodialysis, and Their Caregivers: a Mixed Methods Study Protocol - Free, Open Access Article from BMC Nephrology. - July 9, 2019

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'It's a Terrible Existence:' The Crisis of Emergency Dialysis Care for Undocumented Immigrants - Article from The Nation. - July 8, 2019

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Treating Depression May Reduce Mortality in Diabetes Patients - Article from HealthDay. - July 8, 2019

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Dialysis Dilemma: With DaVita Closing in November, Where Will Local Residents Go? - Article from Republican Eagle (Redwing, MN, pop. 16,500). - July 5, 2019

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Alterations of Default Mode Functional Connectivity in Individuals with End-Stage Renal Disease and Mild Cognitive Impairment - Free, Open Access article from BMC Nephrology. - July 5, 2019

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Gait Abnormalities and the Risk of Falls in CKD - Published Ahead of Print CJASN abstract and editorial extract. - July 5, 2019

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Using Creativity to Banish Brain Fog - Posting from the KidneyViews blog. - July 4, 2019

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Antidepressants Reduce Deaths by More Than a Third in Patients with Diabetes - Press release from the Endocrine Society. - July 2, 2019

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Association of Initiation of Maintenance Dialysis with Functional Status and Caregiver Burden - Free, Full-Text, Published Ahead of Print CJASN Article. - June 2019

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Family Members' Experiences with Dialysis and Kidney Transplantation - Free, full-text, Article in Press from Kidney Medicine. - June 28, 2019

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Impact of Predialysis Psychosocial Conditions on Kidney Transplant Recipient Survival: Evidence Using Propensity Score Matching - Free, Open Access Article from Canadian Journal of Kidney Health and Disease. - June 27, 2019

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Erectile Dysfunction in Renal Failure and Transplant Patients - (Registration required, but free.) Article from Translational Andrology and Urology via Medscape Nephrology. - June 27, 2019

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Not a Warrior: The Value of Embracing Chronic Kidney Disease - Posting from the KidneyViews blog. - June 27, 2019

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How a State Advances Whole-Person Health Care - Article from NEJM Catalyst. - June 27, 2019

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Second-Chance Placement of Hemodialysis Patients After Involuntary Discharge for Disruptive Behavior - Articles in Press Abstract from American Journal of Kidney Diseases. - June 27, 2019

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Efficacy of a Moisturizer for Pruritus Accompanied With Asteatosis in Dialysis Patients: An Open-Label, Randomized, Exploratory Study - Free, full-text, Article in Press from Kidney Medicine. - June 27, 2019

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Prevalence of Cognitive Impairment among Peritoneal Dialysis Patients: a Systematic Review and Meta-Analysis - First Online abstract from Clinical and Experimental Nephrology. - June 27, 2019

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Free, Full-Text, New Online Articles from the Journal of the American Medical Association - June 26, 2019

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The Nurse's Role When a Patient Requests Medical Aid in Dying - Press release and position statement (6-page pdf) from the American Nurses Association. - June 26, 2019

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In Secret, Seniors Discuss ‘Rational Suicide’ - Article from Kaiser Health News. - June 25, 2019

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The Relationship among Coping Strategies, Quality of Life and Anxiety and Depressive Disorders in Hemodialysis Patients - Accepted Article abstract from Therapeutic Apheresis and Dialysis. - June 24, 2019

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If You're Chronically ill, Setting Limitations Can Make Your Symptoms Manageable - Posting from the KevinMD blog. - June 24, 2019

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Non-English Speakers Face Health Setback If Trump Loosens Language Rules - Article from Kaiser Health News. - June 24, 2019

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Mental Health and Psychosocial Adjustment in Pediatric Chronic Kidney Disease Derived from the KNOW-Ped CKD Study - First Online abstract from Pediatric Nephrology. - June 20, 2019

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View from the Chair: Taming Terrible Tape Troubles - Posting from the KidneyViews blog. - June 20, 2019

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The Kidney Patient Reported Experience Measure (PREM) - Annual UK national survey of kidney patients and previous year's results from Kidney Care UK.  2019

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Late-Life Diabetes Status Tied to New Cognitive Impairment - Article from HealthDay. - June 19, 2019

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People with Multiple Physical Conditions Have Faster Brain Decline, Higher Suicide Risk - Press release from University of Michigan. - June 19, 2019

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How Much Work Brings Happiness? Not Much, Study Shows - Article from HealthDay. - June 19, 2019

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Postural Stability during Standing and Its Association with Physical and Cognitive Functions in Nondialysis Chronic Kidney Disease Patients - Free, full-text, First Online article from International Urology and Nephrology. - June 18, 2019

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Advances in Rehabilitation for Chronic Diseases: Improving Health Outcomes and Function - Free, full-text, state-of-the-art review from The BMJ. - June 17, 2019

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Muscle Relaxant Use in Dialysis - Posting from the AJKD blog. - June 17, 2019

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Women's Reproductive Health for the Nephrologist - Article in Press abstract from American Journal of Kidney Diseases. - June 17, 2019

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Facebook Posts Better at Predicting Diabetes, Mental Health Than Demographic Info - Press release from the University of Pennsylvania School of Medicine. - June 17, 2019

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As Price of Insulin Soars, Americans Caravan to Canada for Lifesaving Medicine - Article from The Washington Post. - June 16, 2019

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Articles from NEJM Catalyst - June 12, 2019

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Anxiety Symptoms in Patients Treated With Hemodialysis: Measurement and Meaning - Free, Full-Text, Articles in Press from American Journal of Kidney Diseases. - June 11, 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

Depression 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

blue ball Home Dialyzors United Face Book discussion page
I Hate Dialysis web site
I Hate Dialysis Face Book discussion page
Kidney Disease, Dialysis, and Transplantation Face Book discussion page
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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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