RenalWEB Home Page
Last Updated 5/12/13

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

Camp O, for Kids with Kidney Disease, June 8-14 - Press release from (non-profit) DCI. - May 11, 2013

CDC: About 1 in 8 Seniors Report Cognitive Decline - Articles from Nurse.com and HealthDay. Morbidity and Mortality Weekly Report article. - May 8, 2013

Docs Should Ask Heart Patients About Quality of Life - Article from HealthDay. - May 8, 2013

A Long Unrecognized Syndrome: Failure to Thrive on Dialysis - Article from RenalWEB that includes a history, symptoms, causes, and possible interventions for this obvious, but long unrecognized, syndrome. It's a starting point. - May 7, 2013
Editor's note: It looks like Kent Thiry will be staying in his position at DaVita for some time. If so, this article provides a completely new way for him to view his dialysis patients. (I promise never to use this link again.)
I first published this article in late March with a different title. However, after seeing this story on misdiagnoses in The Washington Post today, I realized that my article really did describe a syndrome (depression, withdrawal from dialysis, unemployment, loss of life meaning, noncompliance, etc.) with causes that can be effectively addressed by the medical and business community. While the article obviously will need some further editing, I decided to simply republish it with a new title for now. The foundation and much of the structure for defining this syndrome is already there (and the closing quotation is still perfect.)
Making this a recognized medical syndrome/diagnosis would motivate nephrologists to provide the same care to all patients that they would want for themselves and their own family members. I hope Mr. Thiry can take the lead in the business community in addressing this syndrome that affects so many of his patients.

Understanding a Heart Patients' Quality of Life Can Improve Outcomes - Press release from the American Heart Association. Online first article (18-page pdf) from Circulation. Related article from HealthDay. - May 7, 2013

The Relationship between Depressive Symptoms and Erythropoietin Resistance in Stable Hemodialysis Patients with Adequate Iron Stores - Article in Press abstract from the International Journal of Artificial Organs. - May 6, 2013

4 Steps to Move From "Good" to "Great" Patient Experience - Article from Becker's Clinical Quality & Infection Control. - May 6, 2013
"The first step in moving to the next level of patient experience improvement is understanding that patient experience is more than "happiness" and being treated like a hotel guest. Rather, patient experience is a multifaceted concept including patients' physical, emotional and mental well-being."
Editor's note: Sitting in a chair for four hours does not capture the dialysis patient experience.

Chaos at Home Spells Trouble for Diabetic Kids - Article from MedPage Today. - May 5, 2013

Articles from Renal & Urology News - May 4, 2013
Dialysis Initiation Consensus Developed in Canada
Advanced Care Planning Urged for Dialysis Patients

Regional Variation in Care at the End of Life: Discontinuation of Dialysis - Provisional abstract and full-text article (18-page pdf) from BMC Geriatrics. - May 3, 2013

Risk Factors for Cognitive Dysfunction in CKD and Hypertensive Subjects - Article in Press abstract from International Urology and Nephrology. - May 3, 2013

Dermatological Manifestations Among Patients on Maintenance Hemodialysis - (Registration required, but free) Full-text article from Wounds via Medscape Nephrology. - May 2, 2013

Physicians Less Empathetic in Communicating with Heavy Patients - May 1, 2013

Dialysis Patient Transportation in Ohio County Ends Due to Federal Sequester Budget Cuts - News report from WKYC. - May 1, 2013

Psychological and Emotional Status, and Caregiver Burden in Caregivers of Patients With Peritoneal Dialysis Compared With Caregivers of Patients With Renal Transplantation - Abstract from Transplant Proceedings. - May 1, 2013

Experts Discuss Ways To Embed Patient Voices and Values in Clinical Research - Press release and full-text article from Mayo Clinic Proceedings. - May 1, 2013

Engaging Health Care Users for Better Health and Quality Care - Article from Hospitals & Health Networks. - May 1, 2013

Pregnancy and Kidney Disease in May 2013 Issue of Advances in Chronic Kidney Disease - May 2013
Pregnancy and Kidney Disease: Crossroads No More
Pregnancy and Kidney Disease—The Miracle Continues Against All Odds

Recent Insights Into Life Expectancy With and Without Dialysis - (Registration required, but free) Full-text article from Current Opinion in Nephrology and Hypertension via Medscape Nephrology. - April 30, 2013

Influence of Psychosocial Factors on the Energy and Protein Intake of Older People on Dialysis - Articles in Press Abstracts from Journal of Renal Nutrition. - April 30, 2013

Articles in Press Abstracts from American Journal Of Kidney Diseases - April 29, 2013
Association Between Depression and Death in People With CKD: A Meta-analysis of Cohort Studies
Trends in Hip Fracture Rates in US Hemodialysis Patients, 1993-2010

Changes in Certain Facial Structures Associated With Polycystic Kidney Disease - Article from Nature World News. Abstract from Human Molecular Genetics. - April 25, 2013

NEJM: Chronic Pruritus - April 25, 2013

Study Finds That Dialysis Patients Who Use DaVita Rx Live Longer - Press release. - April 24, 2013
Editor's note: The only new projects or products likely to be approved by upper management in large for-profit corporations are those that offer high profit margins. This project ideally fits that criteria.
Projects and products that could greatly improve patient care and improve Medicare patient survival, but offer no additional or small profit margins, are not likely to be championed by any business executive in these organizations. The chief medical officers report to these businessmen.
Ironically, the same logic applies for most patient advocacy organizations. They will only champion causes that guarantee continued corporate funding. Guess who controls the patients' fates.
We need leadership that wants more for patients.

Patient-Centered Outcomes Research Institute to Invest Up to $68 Million to Develop a National Patient-Centered Clinical Research Network - Press release. - April 23, 2013

Relationship between Fatigue and Social Support in Hemodialysis Patients - Early View abstract from Nursing & Health Sciences. - April 22, 2013

Does More Frequent Hemodialysis Impact Mental Health? - Posting from the eAJKD blog. - April 22, 2013

Cancer Center Goes Public with Assisted-Suicide Protocol - (Registration required, but free) Article from American Medical News. - April 20, 2013

Slow Walking Speed Linked with Premature Death in Kidney Disease Patients - Press release and JASN Express abstract from the American Society of Nephrology. - April 20, 2013

Skin Lesions in Dialysis - Part 5 - Posting from the Renal Fellow Network blog. - April 18, 2013

Psychological Factors Associated with Successful Outcomes in Home Hemodialysis - Accepted Article abstract from Nephrology. - April 18, 2013

How Baseline, New Onset, and Persistent Depressive Symptoms Are Associated with Cardiovascular and Non-Cardiovascular Mortality in Incident Patients on Chronic Dialysis - Article in Press abstract from Journal of Psychosomatic Research. - April 18, 2013

Skin Lesions in Dialysis - Part 4 - Posting from the Renal Fellow Network blog. - April 16, 2013

Patient Satisfaction May Not Be A Good Indicator Of Surgical Quality, Study Finds - Posting from the Kaiser Health News blog. Press release from Johns Hopkins Medicine. - April 16, 2013

Renal Supportive Care — Accepted Articles Abstracts and Free, Full-Text PDFs from Nephrology - April 16, 2013
The Often Difficult Decision of Which Patients Will Benefit from Dialysis
Legal Issues concerning Withholding and Withdrawal of Dialysis
Educational Needs in Supportive and End of Life Care
Management Guidelines for Patients Choosing the Renal Supportive Care (RSC) Pathway: Information and Web-based Treatment Protocols Available to All
Research Issues in Elderly Patients: Gaps in Knowledge and Suggested Directions
Renal Supportive Care and the Primary Care Physician
Issues and Models of Renal Supportive Care in Rural Areas
Models of Care – End of Life Pathways
Running and Setting up a Renal Supportive Care Program
Inappropriate Interventions in the Dying Patient
Holistic Palliative Care Approach-Physical, Spiritual, Religious and Psychological Needs
Appropriate Assessment of Symptom Burden and Provision of Patient Information
Ethical Principles for Patients, Families and Doctors to Consider
Quality of Life. What Information Is Already Available and What Evidence Is This Based on?
Predictive Modelling Risk Calculators and the Non Dialysis Pathway

'Art' of Interpersonal Medicine Improves Patient Outcomes - Articles from HealthDay and Medscape Medical News. Abstract and editorial extract from Annals of Internal Medicine. - April 15, 2013
"Therefore, to achieve desired health outcomes, it is essential to focus on optimizing both the technical and the interpersonal processes in care."

Implementing a Death with Dignity Program at a Comprehensive Cancer Center - Abstract from The New England Journal of Medicine. - April 11, 2013

Articles from the Heartland Kidney Network - April 2013
Is Communication the Root Cause of All Root Causes?
Survey Highlight Task 4 & 5

 
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  DAILY COMFORTS

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
Restless Legs Syndrome from the BBC Health web site
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
Uremic pruritus in chronic hemodialysis patients - review (pdf format requires Adobe Acrobat Reader) from the Journal of Nephrology - March/April 2008
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
Island Dialysis - Jamaica, St. Lucia and Barbados
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

How Depression Affects Dialysis (1-page pdf) Poster from the Northwest Renal Network.

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
Requiring Higher Doses of Erythropoietin Suggests Pregnancy in Hemodialysis Patients - abstract from The Nephron Journals - 1998
 
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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 Access to Benefits Coalition web site

Kidney Living is a FREE magazine for dialysis patients from the National Kidney Foundation's web site

Home At Last Newsletter from the NxStage 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! - 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 - Video 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
Keeping Fit On Dialysis from the UK National Kidney Foundation web site
Continuing Education Webinar Series from the Coalition for Supportive Care of Kidney Patients web site
Kidney Health Podcast Series from the American Kidney Fund (AKF) 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.
Just the Facts: Rehabilitation and Información esencial: Rehabilitación (pdf format requires Adobe Acrobat Reader) from the Life Options web site
renalinfo web site from Baxter International Inc.
Staying Fit With Kidney Disease from the National Kidney Foundation (NKF)
 
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  PATIENT WEB SITES

Health Platform for Kidney Disease web site by Shad Ireland Foundation

Communications from the Heart web site by Lori Hartwell

Barbara's Kidney Web Site
 
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  ORGANIZATIONAL & EDUCATIONAL WEB SITES

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

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
Everyday Choices for A Healthier LIFE 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
Improving Patient Advocacy in Chronic Kidney Disease (ImPACKD) web site

Innovation Center a new website for a new approach to healthcare from the Center for Medicare and Medicaid

InteliHealth  is the top-rated web site for general health information (subsidiary of Aetna U.S. Healthcare)
Kidney & Urology Foundation of America (KUFA) 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
KidneySpeakers - Patient speakers' organization from Renal Support Network (RSN) 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"

Lupus Foundation of America web site

Mayo Clinic's Online Health Community 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 Advocate Foundation (PAF) web site

Polycystic Kidney Research Foundation web site

Renal Health web site

Renal Support Network (RSN) web site and HOPEline

Restless Legs Syndrome Foundation web site (opens new browser window)

Safe Kidney Care web site
S.L.E. Lupus Foundation web site - helping people with lupus for over 35 years
Small Comforts Foundation is a not-for-profit organization dedicated to funding and administering programs which will improve the quality of life and raise the morale of people living with chronic illness or other medical problems.
 

  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
DIALYSIS_SUPPORT - from Yahoo Groups - end-stage renal disease (ESRD) support and educational forum
HealCam - from MedGadget.

Hope Street web site from the National Kidney Foundation

Nephkids - a cyber-support group for Parents of Children with Kidney Disease
 
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  PRODUCTS

Communication Prescription: A video education program for the renal care professional RN (Price $399 plus shipping and handling) from the Hartwell Communications
Poignant Moments...A Caregiver's Perspective - New book written by John Francis Wissler, caregiver to his spouse Lois, an ESRD patient.
Equipment for the disabled web sites from Yahoo.com
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 - 2013 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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