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Last Updated 12/17/17

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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DaVita TV Ads Cheer FL Sen. Bill Nelson - Blog posting from Florida Politics. - December 14, 2017

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1 in 5 Older Patients with Chronic Disease Report Health Care Discrimination - Press release from UCSF. Article from HealthDay. - December 14, 2017

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Effect of Sedative-Hypnotic Medicines on Mortality in Peritoneal Dialysis Patients with Sleep Disorders: A Retrospective Cohort Study - Issue-In-Progress Abstract from Blood Purification. - December 14, 2017

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Fear Compromises the Health, Well-Being Of Immigrant Families, Report Finds - Article from Kaiser Health News. - December 13, 2017

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These Annual Checkups Help Seniors Not Only Survive But Thrive - Article from Kaiser Health News. - December 13, 2017

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An Overlooked Epidemic: Older Americans Taking Too Many Unneeded Drugs - Article from Kaiser Health News. - December 12, 2017

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Children Tolerate Intradialytic Oral Nutrition - Early View Abstract from Journal of Renal Care. - December 12, 2017

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Early View Abstracts from Hemodialysis International - December 11, 2017

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Patient Satisfaction, Caregiver Communication Can Reduce Risk of Hospital Readmission - Press release from Massachusetts General Hospital. - December 11, 2017

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People Say They Want to Live Longer – If in Good Health - Press release from University of Kansas. - December 11, 2017

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International Comparisons of Prevalence, Awareness, and Treatment of Pruritus in People on Hemodialysis - Free, Full-Text Article from the Clinical Journal of the American Society Of Nephrology. - December 7, 2017

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Increased Serum Level of IGF-1 Correlates With Better Cognitive Status in End-Stage Renal Disease Patients Undergoing Hemodialysis - Early View Abstract from Therapeutic Apheresis and Dialysis. - December 7, 2017

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I Use a Wheelchair. And Yes, I'm Your Doctor. - Article from The New York Times. - December 6, 2017

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Hospitals That Act As Modern-Day Debtor Prisons Deny Rights and Dignity - Article from STAT. - December 5, 2017

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The Body Changes Dramatically during Pregnancy — and That Might Mean Medication Doses Are All Wrong - Video from STAT. - December 5, 2017

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Retail Health Care Lacks the Personal Connections That Patients Want and Need - Article from STAT. - December 4, 2017

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Old Age and Dialysis: Is It Really the Deadly Cocktail? - Posting from the AJKD blog. - December 1, 2017

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Health-Related Quality of Life across All Stages of Autosomal Dominant Polycystic Kidney Disease - Free, full-text article from NDT. - December 1, 2017

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Dialysis Depression – Patients Helping Patients - December 2017

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San Antonio Woman Set to Be Longest Dialysis Patient at 42 Years in Treatment - Article from San Antonio Express-News. - November 30, 2017

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Caring for Undocumented Immigrants With Kidney Disease- Articles in Press Abstract from American Journal Of Kidney Diseases. - November 30, 2017

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Patient-Reported Outcome Measures for Fatigue in Patients on Hemodialysis: A Systematic Review - Article in Press abstract from American Journal of Kidney Diseases. - November 29, 2017

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Lack of Communication Puts Older Adults at Risk of Clashes between Their Medicines - November 29, 2017

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Uremic Pruritus: An Itch with Ominous Consequences - Free, full-text, Issue-in-Progress editorial from American Journal of Nephrology. - November 28, 2017

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Free, Full-Text Articles from The Journal of the American Medical Association - November 28, 2017

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Quality of Life and Depression Among Mexican Americans on Hemodialysis: A Preliminary Report - Early View abstract from Therapeutic Apheresis and Dialysis. - November 28, 2017

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Cognitive Function and Kidney Disease — Baseline Data From the Systolic Blood Pressure Intervention Trial (SPRINT) - Article from Medscape Nphrology (registration required, but free). - November 24, 2017

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Prevalence and Patterns of Cognitive Impairment in Adult Hemodialysis Patients: the COGNITIVE-HD Study- Advance Article Abstract from NDT. - November 22, 2017

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'SONG' Initiative Gives Kidney Disease Patients a Voice in their Treatment - Article from Baylor College of Medicine. - November 22, 2017

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The Most Frustrating Things about Being Chronically ill - Posting from the KevinMD blog. - November 22, 2017

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Treating Depression in Patients With Advanced CKD — Beyond the Generalizability Frontier - Editorial extract and related abstract from the Journal of the American Medical Association. - November 21, 2017

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Frailty and the Quality of Life in Hemodialysis Patients: The Importance of Waist Circumference - Article in Press Abstract from Journal Of Renal Nutrition. - November 20, 2017

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The Role of Socio-Demographic Factors in Depression and Anxiety of Patients on Hemodialysis: an Observational Cross-Sectional Study - First Online abstract from International Urology and Nephrology. - November 20, 2017

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Quality of Life Following Hospitalization-Associated Acute Kidney Injury in Children - First Online abstract from Journal of Nephrology. - November 18, 2017

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Serlopitant Is Itching to Quell Chronic Pruritus - Article from Internal Medicine News. - November 16, 2017

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The Untold Story of Life after Receiving an Organ Transplant - Article from The Huffington Post. - November 14, 2017

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Cognitive Impairment in Hemodialysis Patients: Implementation of Cutoff Values for the Montréal Cognitive Assessment (MoCA)-Test for Feasible Screening - Free, Open Access Article from PLOS ONE. - October 10, 2017

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Caring for the Human Spirit  Magazine - (40-page pdf) Fall/Winter 2017 issue. 

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Making Lemonade Out of Lemons - First-place winner of Renal Support Network's 15th annual essay contest. - September 18, 2017

 
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  DAILY COMFORTS

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Mayo Clinic Q and A: Restless Legs Syndrome 

blue ball Why Am I So Thirsty? and Porqué Me Da Tanta Sed? (pdf format requires Adobe Acrobat reader) from the ESRD Network of Texas web site
Sleep and Sleep Disorders from the Centers for Disease Control and Prevention (CDC) web site (page down if you don't see the article)
Obstructive sleep apnoea clinical signs, diagnosis and treatment full-text editorial commentary from Nephrology Dialysis Transplantation
Just the Facts: Restless Legs Syndrome and Información esencial: Síndrome de piernas inquietas (pdf format requires Adobe Acrobat Reader) from the Life Options web site
Just the Facts: Skin and Hair Problems on Dialysis and Información esencial:Problemas del cabello y de la piel por la diálisis (pdf format requires Adobe Acrobat Reader) from the Life Options web site
Skin Problems in Chronic Kidney Disease - free, full-text , advance online review from Nature Clinical Practice Nephrology - February 2009
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Sleep Disorders in People Who Have Chronic Kidney Disease - KidneyTalk podcast from Renal Support Network. - May 2017

comfort AND dialysis - PubMed search Continually Updated!
restless leg syndrome - PubMed search Continually Updated!
constipation and dialysis - PubMed search Continually Updated!
exercise and dialysis - PubMed search Continually Updated!
thirst AND dialysis - PubMed search Continually Updated!
itching AND dialysis - PubMed search Continually Updated!
 
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  VACATIONS & TRAVELING

Just the Facts: Traveling on Dialysis and Información esencial: Viajes con diálisis (pdf format requires Adobe Acrobat Reader) from the Life Options web site
AKFCamp List for Pediatric ESRD Patients from the American Kidney Fund (AKF)
Peritoneal Dialysis Travel “Tool Box” (pdf format requires Adobe Acrobat reader) from the ANNA web site
Dialysis at Sea Cruises - cruises for hemodialysis, CAPD, CCPD, and transplant patients
Dialysis Travel Websites - dialysisfinder.com and Nephron Information Center
 

  EMOTIONAL EFFECTS AND DEPRESSION

Just the Facts: Dealing with Depression and Información esencial: Cómo enfrentar la depresión (pdf format requires Adobe Acrobat Reader) from the Life Options web site
Dialysis without Fear from the Oxford University Press - Dr. Offer brings his years as a psychiatrist to bear as he provides practical advice on how patients can overcome fears and hardship
Depression on Dialysis full-text minireview from Nephron Clinical Practice
When Your Loved One is Depressed from the American Association of Kidney Patients (AAKP)
Depression in End-Stage Renal Disease: Current Advances and Research abstract from Seminars in Dialysis. - January/February 2010
Depression and its association with peritonitis in long-term peritoneal dialysis patients - abstract from the American Journal of Kidney Diseases (AJKD) - August 2003
The Emotional Effects of Kidney Failure from the Kidney Patient's Guide (UK site) web site
Depression AND dialysis - PubMed search Continually Updated!
 
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  INSPIRATIONAL RESOURCES

Chronically Happy is an inspirational book, by Lori Hartwell, that helps people living with chronic illness create joyful, fulfilling lives.
Strength and Compassion in Kidney Failure, a book by Mildred Friedman
Tips & Stories from the Life Options Rehabilitation Program web site
Caregivers, Partners, Family and Friends from the Kidney Patient's Guide (UK site) web site
Dialysis without Fear: A Guide to Living Well on Dialysis for Patients and Their Families - book about dialysis from the patient's perspective

Hope, Inspiration & Wisdom: A Treasury of Thoughts on Coping with Kidney Disease book from Renal Support Network

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
blue ball Requiring Higher Doses of Erythropoietin Suggests Pregnancy in Hemodialysis Patients - abstract from The Nephron Journals - 1998
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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

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
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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
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.
blue ball NIDDK Publications On-line from the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
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
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

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
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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