RenalWEB Home Page
Last Updated 12/18/16

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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Exercise Limitation in Chronic Kidney Disease: Deep Seas and New Shores - Free, Full-Text Article from NDT - December 2016

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Drive-Through Dialysis - Posting from the KidneyViews blog. - December 15, 2016

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Experiences of Patients Undergoing Dialysis Who Are from Ethnic and Racial Minorities - Early View abstract from Journal of Renal Care. - December 15, 2016

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Palliative Care for Patients with End-Stage Renal Disease: Approach to Treatment That Aims to Improve Quality of Life and Relieve Suffering for Patients (and Families) with Chronic Illnesses - Free, full-text, Advance Access article from Clinical Kidney Journal. - December 15, 2016

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Celeste Castillo-Lee: Choosing Hospice - KidneyTalk podcast from Renal Support Network. - December 15, 2016

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“Zombie” Outbreak Caused by a Synthetic Cannabinoid in New York - Free, full-text, Online First article from The New England Journal of Medicine. Article from HealthDay. - December 14, 2016
Editor's note: Why haven't zombie outbreaks been reported in US dialysis centers? U.S. nephrology's longtime targets for dialysis care, "not dead" and "not in the hospital," turn far too many patients into zombies. Without any emphasis on patient employment and rehabilitation, U.S. dialysis centers default to becoming zombie factories.

Who would be attracted to this field of medicine today? (Is it the American Society of Junk-Bond Nephrology or the American Society of Zombie Nephrology?)

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Cognition in Chronic Kidney Disease: a Systematic Review and Meta-Analysis - Free, Open Access article from BMC Medicine. - December 14, 2016

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Not All Patients Share the Same Views on End of Life - Posting from KevinMD blog. - December 14, 2016

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Sustained Enjoyment of Life and Mortality at Older Ages - Free, full-text article from the BMJ. Article from HealthDay. - December 13, 2016

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CMS Releases Its Person and Family Engagement Strategy - Posting from The CMS Blog. - December 13, 2016

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Targeting Unmet Social Needs—Next Steps Toward Improving Chronic Disease Management - New Online commentary extract and article abstract from JAMA Internal Medicine. Press release from Massachusetts General Hospital. - December 12, 2016

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Dementia and Alzheimer’s Disease Are Serious Health Concerns for Older Kidney Transplant Recipients - Press release and JASN Express abstract from the American Society of Nephrology. - December 9, 2016

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Dialysis Clinic Surveys: Waiting, Waiting, Waiting - Article from Nephrology News & Issues - December 9, 2016

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Yoga Called Good Medicine for High Blood Pressure - December 8, 2016

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Mortality, Hospitalization, and Quality of Life among Patients with Hepatitis C Infection on Hemodialysis - Free, full-text, CJASN Express article. - December 7, 2016

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Effects of a 12-Week Program of Tai Chi Exercise on the Kidney Disease Quality of Life and Physical Functioning of Patients with End-Stage Renal Disease on Hemodialysis - Article in Press abstract from Complementary Therapies in Medicine. - December 7, 2016

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Association Between 900 Steps a Day and Functional Decline in Older Hospitalized Patientsus - December 5, 2016

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Simple Walking Program Provides Physical and Mental Benefits to Dialysis Patients - Press release and JASN Express abstract from the American Society of Nephrology. - December 1, 2016

Editor's note: Perhaps exercise equipment should be built into dialysis center stations (with lower blood flow rates during exercise?).

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Mortality, Hospitalization, and Quality of Life among Patients with Hepatitis C Infection on Hemodialysis - CJASN Express abstract. - December 1, 2016

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Hallucinogenic Drug Psilocybin Eases Existential Anxiety in People with Life-Threatening Cancer - December 1, 2016

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Psilocybin May Be a Psychiatry Game Changer - (Registration required, but free.) Article from Medscape Medical News. Article from STAT. - December 1, 2016

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RSN's 18th Annual Renal Teen Prom - Jan. 15 - November, 2016

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Standing or 'Easy' Walks May Help Type 2 Diabetics Control Blood Sugar - November 30, 2016

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Closing On December 1, 2016 - Public Comment for Draft Nutrition and Hydration at the End of Life - Notice from the American Nurses Association Center for Ethics and Human Rights. - November 30, 2016

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New Findings Cement Ties Between Kidney Disease, Cognitive Woes - Article from Medscape Nephrology (registration required, but free). - November 27, 2016

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Comparison of Goals of Care Between Hemodialysis Patients and Their Health Care Providers - Full-text article from Canadian Journal of Kidney Health and Disease. - November 24, 2016
"Health care providers' understanding of their hemodialysis patients' GoC (goals of care) was found to have poor agreement with their patients' reported GoC. This finding supports the importance of frequent and effective goals of care discussions and illness education for this population."

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Knowledge, Barriers and Facilitators of Exercise in Dialysis Patients: a Qualitative Study of Patients, Staff and Nephrologists - Free, Open Access Article from BMC Nephrology. - November 24, 2016

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Depression Prevalence in Patients with Mild Cognitive Impairment - November 23, 2016

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Dialytic Hemodynamics Are Associated with Changes in Gait Speed - Early View abstract from Hemodialysis International. - November 22, 2016

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Yogic Breathing Helps Fight Major Depression - Press release from University of Pennsylvania School of Medicine. - November 22, 2016

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Palliative Care Raises Quality of Life, But Doesn't Extend It - November 22, 2016

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Frailty, Kidney Function, and Polypharmacy: The Atherosclerosis Risk in Communities (ARIC) Study - Articles in Press Abstract from American Journal Of Kidney Diseases. - November 21, 2016

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Dramatic Decline in Dementia Seen among Older Adults in the US - Articles from STAT and HealthDay. Free, full-text, New Online article and commentary from JAMA Internal Medicine. - November 21, 2016

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Self-Reported Physical Activity, Quality of Life, and Psychological Status in Relation to Plasma 25-Hydroxyvitamin D Concentration in Patients Treated with Hemodialysis - Free, Open Access, Issue-In-Progress Article from Kidney and Blood Pressure Research. - November 21, 2016

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Comparison of Saudi Arabian Hemodialysis and Peritoneal Dialysis Patients' Illness Perceptions - Free, Open Access Latest Article from Renal Failure. - November 21, 2016

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Pain Management in CKD: A Guide for Nephrology Providers - Articles in Press Abstract from American Journal Of Kidney Diseases. - November 20, 2016

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Short and Poor Quality Sleep May Have Negative Effects on Kidney Function - Article from HealthDay - Press Release from the American Society of Nephrology. - November 19, 2016

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Opioid Rx Linked to Higher Mortality in Dialysis Patients - Article from MedPage Today (registration required, but free). - November 18, 2016

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Cognitive Performance Is Highly Stable over a 2-Year-Follow-Up in Chronic Kidney Disease Patients in a Dedicated Medical Environment - Free, Open Access Article from PLOS ONE. - November 8, 2016

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Patient-Driven Dialysis Care at Ryhov Hospital (Sweden) - Case study abstract from Hospitals in Pursuit of Excellence (HPOE). Related article on Donald Berwick from Hospitals & Health Networks. - Janurary 2013

"Sweden's Ryhov Hospital has initiated a self-dialysis program that allows patients to come and go as they please and administer their own dialysis."

"Berwick was joined on stage by two patients from Ryhov, who challenged hospital leaders hesitant to give up such control, to "see the person behind the patient" and "challenge the culture" of your own institution."

 
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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
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
New Book: 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 Southern California Renal Disease Council 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

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
Dialysis & Kidney Disease Face Book discussion page
Care-Partners for Home Dialysis Face Book discussion page

Communications from the Heart web site by Lori Hartwell

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
Congressional Kidney Caucus 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
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
Ask Beth (Beth Witten, MSW, ACSW, LSCSW) from the Life Options web site
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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