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Last Updated 01/22/12

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

Fresenius Medical Care Salutes Patients Who Prioritize Fitness and Health - Press release. - January 19, 2012
Editor's note: 40 years after the start of the federal dialysis program, this is where the largest dialysis provider is at in terms of patient quality of life — encouraging exercise and a good diet. No mention of patient employment. No mention of rehabilitation programs.
Is this what taxpayers deserve after spending hundreds of billions of dollars over the last 40 years?

The Correlation of Antidepressive Agents and the Mortality of End-Stage Renal Disease: a Health Insurance Research Database Study in Taiwan - Accepted Article abstract from Nephrology. - January 19, 2012

Enhancing Cognition in Older Adults Also Changes Personality - January 18, 2012

"Southern Food" Chef Paula Deen Hid Diabetes, Pushed High-Fat Food - Article from AP. - January 17, 2012

New Jersey Parents Say Mentally Disabled Girl, Three, Denied Kidney Transplant; Experts Say Situation Is Complex - Articles from The Washington Post and AP. Blog posting from BioEdge. - January 17, 2012
Also see: 15,000 Demand Transplant for Mentally Delayed Child

Xerostomia (dry mouth) in Patients on Chronic Hemodialysis - Advance Online abstract from Nature Reviews Nephrology. - January 17, 2012

Jack Black Skips Golden Globes and Reigns at 13th Annual Renal Teen Prom ? - Article from Patch.com. Video from KARE. - January 16, 2012

'Team Amelia' Backs Kidney Transplant for Special Needs Child - Article from USA Today. - January 16, 2012

A Washington State Patient Writes about Dialysis: It's a Really Bad Part-Time Job - January 16, 2012

Renal Support Network's Annual Renal Teen Prom is Jan. 15

Quality of Life and Protein Energy Wasting in Kidney Transplant Recipients - Online First Abstract from International Urology and Nephrology - January 14, 2012

Data: Hospice Programs Grow in Popularity - Article from Hospitals & Health Networks. - January 13, 2012

Kidney Dysfunction and Cognitive Decline in Women - CJASN Express Abstract - January 2012

Jack Black To Attend Renal Teen Prom - January 12, 2012

Depression in Dialysis Patients and Its Association with Nutritional Markers and Quality of Life - Articles in Press Abstract from Journal of Nephrology - January 11, 2012

Combine Diabetes, Depression Care for Best Results - Article from MedPage Today. - January 10, 2012

Los Angeles Area Teens With Kidney Problems Getting A Dream Prom - Video from CBS Los Angeles. - January 10, 2012

Evening Option for Dialysis Patients (in Malta) - Article from the Times of Malta. - January 9, 2012
"Called the “twilight shift”, the evening session started being offered earlier this month between 8 p.m. and midnight at Mater Dei Hospital’s Renal Unit – allowing patients to get on with their daily lives."

On Our Own: Why We Who Struggle To Live With Diabetes Could Use A Helping Hand - Full-text article from Health Affairs. - January 2012
A woman with diabetes points out the shortcomings of a system that blames people with the disease—rather than taking steps to prevent diabetes, diagnose it earlier, and support the best care.

NKF of Singapore Launches First Major Public Fundraising Campaign in Six Years - Article from Channel News Asia. - January 7, 2012

The Story Behind Nick Cannon's 'Mild' Kidney Failure - January 5, 2012

Zinc Sulfate for Relief of Pruritus in Patients on Maintenance Hemodialysis - Early View Abstract from Therapeutic Apheresis and Dialysis - January 5, 2012

Ironman Shad Ireland: An Iron Will - KidneyTalk podcast from Renal Support Network. - January 4, 2012

Book Review: Keep Dancing: Life May Not Be the Party We Hoped For, But... by Rosie Giesie - Posting from the Seattle Post Intelligencer. - January 2, 2012

The Elderly React Slowly Because They Want To Be Right - December 31, 2011

Clinical Performance Targets and Quality of Life in Hemodialysis Patients - Issue-in-Progress abstract from Blood Purification. MUST READ!! - December 30, 2011
"Patients value health-related quality of life (HRQOL) over survival."
"Conclusion: Attainment with widely accepted clinical performance targets was not related to the HRQOL of hemodialysis patients. Hence, in clinical guidelines, HRQOL should be adopted as an explicit treatment goal for these individuals."
Editor's note: Isn't it amazing that 40 years after the start of the federal dialysis program, nephrologists and CMS haven't figured out what is important to patients. It seems that nephrologists' specialized knowledge is incongruous with significantly improving HRQOL for dialysis patients.
Nephrologists receive no training in improving HRQOL, renal rehabilitation, or the importance of maintaining patient employment. It is time to admit that If we are going to significantly improve dialysis patients' lives and their treatment regimens, nephrologists can neither lead this movement nor lead the involved care teams.
We have picked the wrong head coaches with the wrong goals and the wrong strategies. What do you do when a team doesn't improve after many years of having the same highly paid coach? If we had kept patient employment and rehabilitation as goals over the last forty years, this paper would likely have never been written.
Press releases from large corporations often tout that they provide excellent "patient-centered care" by attaining the best results for clinical performance targets. This should end that stance, hopefully once and for all.

Prevalence and Correlates of Erectile Dysfunction in Men on Chronic Hemodialysis: a Multinational Cross-Sectional Study - Advance Access Abstract from NDT - December 29, 2011

Elderly Who Eat Better Stay Mentally Sharp: Study - December 28, 2011

Increased Presence of Cognitive Impairment in Hemodialysis Patients in the Absence of Neurological Events - Issue-in-Progress abstract from American Journal of Nephrology. - December 28, 2011
Editor's note: The authors state that the patients were "well dialyzed." As with so many studies based on "adequate" dialysis, you have to wonder what the results would have been if the patients had received longer and/or more frequent treatments. Many patients speak of a mental fog lifting when they received more therapy.
If patient employment and rehabilitation were overriding goals of renal replacement therapy, we would have hundreds of studies on how to improve cognitive function in CKD5.

Diet, Nutrient Levels Linked to Cognitive Ability, Brain Shrinkage - Press release from Oregon State University. Article from AFP. - December 28, 2011
Editor's note: Effect of the renal diet?

Racial Disparities Seem to Persist in Depression Diagnosis - Article from HealthDay. - December 27, 2011
"Older black Americans less likely to receive diagnosis than white peers, study finds."

Simi Valley (CA) Women Featured in Kidney Series Dies - Article from Ventura County Star. - December 24, 2011

RENAL CAREPARTNERS Expands Services in Georgia - December 23, 2011

Virginia Dialysis Patient Evicted From Home Over Mom’s Drug Arrest - Article from The Huffington Post. - December 22, 2011

Antidepressant, Talk Therapy Fail To Beat Placebo - December 21, 2011

Engaging Patients in Care Design - Video from Hospital & Health Networks. - December 21, 2011

Cognitive Function and the Risk of Death in Chronic Kidney Disease - Issue-in-Progress Abstract from American Journal of Nephrology - December 21, 2011

Systematic Review of the Impact of Erythropoiesis-Stimulating Agents on Fatigue in Dialysis Patients - Advance Access Abstract from NDT - December 20, 2011

AAKP HealthLine Program Conference Call Scheduled for Jan. 25th - December 19, 2011

Pharmacist Fired After Giving Notice of Kidney Transplant Surgery - Article from Job Mouse. - December 19, 2011

Baxter Responds to Patient Needs in Aftermath of Thailand Floods - December 15, 2011

Optimizing Life With a Chronic Health Problem (Kidney Disease) - Press release from Diabetes Health. - December 14, 2011
Editor's note: In terms of goals for dialysis care, I like the phrase "optimizing life" better than "optimal dialysis."

Having the Palliative Care Talk - Article from Hospitals & Health Networks. - December 14, 2011

Nocturnal Leg Cramps and Prescription Use That Precedes Them - Online First abstract from Archives of Internal Medicine. - December 12, 2011

UK Dialysis Patient Gives Birth to Healthy Baby Girl after Daily Dialysis - Article from Liverpool Echo. - December 10, 2011

Depression, Disability Can Follow ICU Care: Study - December 9, 2011

Live & Give Newsletter: Current Issue - Renal Support Network.
 
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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
AKF 2006 Camp List for Pediatric ESRD Patients (pdf) from the American Kidney Fund (AKF)
What do I Need to do Before Traveling as a Dialysis Patient? - from the AAKP web site
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
Understanding Depression in Kidney Disease from the American Association of Kidney Patients (AAKP)
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
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 - list compiled by RenalWEB's Journal Watch
AAKP Diet Tips and Bits from the American Association of Kidney Patients (AAKP) web site
The Fund's Help Line - A Community Service Lifeline from the American Kidney Fund web site
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 Beginnings (pdf format requires Adobe Acrobat reader) - from the American Association of Kidney Patients (AAKP) web site
Kidney Beginnings: The Magazine - from the American Association of Kidney Patients (AAKP) web site
aakpRENALIFE - from the American Association of Kidney Patients (AAKP) 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
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 Kidney End-Of-Life Coalition
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
Kidney Health Podcast Series from the American Kidney Fund (AKF) web site
Kidney Patient HealthLine - free, one-hour conference call designed to educate kidney patients on a variety of topics affecting them and their families, from the American Association of Kidney Patients
KidneyTalk from the Renal Support Network web site
Life Options Teaching Tools from Life Options
Life on Dialysis: A Lived Experience - 7-page pdf from Nephrology Nursing Journal. - January/February 2010
Live & Give Newsletter: Current Issue - Renal Support Network.
Managing your Life with Kidney Failure from the National Kidney Foundation web site
The National Kidney Foundation’s, People Like Us is offering a series of monthly educational telephone forums entitled Coffee House Conversations™ telephone series.
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.
Spanish Resource Guide - list of resources in Spanish from the American Nephrology Nurses Association (ANNA) - September 2006
Staying Fit With Kidney Disease from the National Kidney Foundation (NKF)
Tips to Survive and Thrive on Dialysis - article from KidneyTimes™
 
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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

Congressional Kidney Caucus web site
Dialysis/Transplant Patient web sites
The Disabled Living Foundation web site
European Kidney Patients' Federation web site (UK version)
Everyday Choices for A Healthier LIFE web site

Forum of End Stage Renal Disease Networks with links to all 18 ESRD Networks

Home Dialysis Central web site

Hope Street web site from the National Kidney Foundation

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 End-Of-Life Coalition web site
Kidney Patient News web site
Kidney School web site and Printed Life Options Kidney School Modules
KidneysDoThat.org web site
KidneySpeak - Patient speakers' organization from Renal Support Network (RSN) web site
Kidney Times web site from the 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)

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.
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.
The Lighter Side of Dialysis+ - book of comic illustrations by a dialysis 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

August 9-11, 2012 - American Association of Kidney Patients (AAKP) 2012 Annual Patient Meeting: Kidney Care - Innovations in a Changing Enviroment, Grand Hyatt Atlanta, Atlanta, GA – meeting page, AAKP web site, (800) 749-2257, fax (813) 636-8122, e-mail
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
Renal Support Network Patient Lifestyle Meetings 2009-2010 Schedule
Kidney Beginnings: Live Schedule presented by the American Association of Kidney Patients (AAKP) - AAKP web site, (800) 749-2257, fax (813) 5639-8122, e-mail
 
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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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