RenalWEB Topic - Comfort & Living A Full Life

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.

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
	HealthUnlocked web site - Ask questions. Get answers. Connect with others like you.
	Home Dialysis Central web site
	Home Dialyzors United web site
	Innovation Center a new website for a new approach to healthcare from the Center for Medicare and Medicaid
	Kidney & Urology Foundation of America (KUFA) web site
	Kidney Care Partners web site
	Kidney Community Emergency Response web site
	Kidney Patient News web site
	Kidney School web site and Printed Life Options Kidney School Modules
	Kidney Smart web site from DaVita
	KidneysDoThat.org web site
	Module Twelve: Staying active with kidney disease from the Life Options Rehabilitation Program: Kidney School™
	Life Options Rehabilitation Program web site - "Dedicated to helping dialysis patients realize their fullest potential"
	Living Kidney Donor Search web site
	Lupus Foundation of America web site
	Mayo Clinic's Online Health Community web site
	National Association of Professional Home Care web site
	National Family Caregivers Association (NFCA) web site
	National Institute of Diabetes & Digestive & Kidney Disease (NIDDK) web site
	National Kidney Foundation (US site) web site
	National Kidney Federation (UK site) web site
	National Patient Safety Agency web site (UK organization)
	Patient Access Network Foundation web site - medication assistance
	Patient Advocate Foundation (PAF) web site
	Polycystic Kidney Research Foundation web site
	Renal Support Network (RSN) web site and HOPEline
	Restless Legs Syndrome Foundation web site
	S.L.E. Lupus Foundation web site - helping people with lupus for over 35 years
	Supportive Care Coalition web site
	Willis-Ekbom Disease Foundation (Restless Legs Syndrome Foundation) web site (opens new browser window)
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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!
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Except where noted, no information within the RenalWEB web site can be copied, duplicated, or reproduced in any form without the express written consent of RenalWEB.

	Cognitive Impairment in Non–Dialysis-Dependent CKD and the Transition to Dialysis: Findings From the Chronic Renal Insufficiency Cohort (CRIC) Study - Free, Full-Text Article from American Journal Of Kidney Diseases. - October 2018
	ESRD and Hospice Care in the United States: Are Dialysis Patients Welcome? - Free, Full-Text Article from American Journal Of Kidney Diseases. - September 2018
	Kidney Symptom Questionnaire: Development, Content Validation and Relationship with Quality of Life - Free, full-text article from Journal of Renal Care. - September 2018
	More Evidence Exercise May Be Good for Your Mood - Article from Reuters. - September 20, 2018
	Sedentary Behavior and CKD - Posting from the AJKD blog. - September 19, 2018
	A Year after Maria, Puerto Rican Kidney Patients Fear Death - Article from AP. - September 19, 2018
	Boomerang – 1st Place Winner 16th Annual Essay Contest - Essay by Gordon LaBuhn via Renal Support Network. - September 17, 2018
	New Pediatric Online Community for Parents of Children with Kidney Disease - Press release from the National Kidney Foundation. - September 17, 2018
	News Summaries from Kaiser Health News - September 17, 2018 It's No Longer Just About Medical Care: Social Factors Are Targeted More And More To Improve Health When Cancer Patients Need Support And Encouragement, Personal Coaches Can Be The Answer
	Shifting Non-Emergency Medical Transportation To Lyft Improves Patient Experience And Lowers Costs - Posting from the Health Affairs blog. - September 13, 2018
	Free, Full-Text, Articles in Press from American Journal Of Kidney Diseases - September 12, 2018 Never Thought I Would. Kidney Tattoos
	Urinary IgM Excretion: a Reliable Marker for Adverse Pregnancy Outcomes in Women with Chronic Kidney Disease - Free, Open Access, First Online article from Journal of Nephrology. - September 11, 2018
	Study Examines Predictors of Dialysis Facility Experiences - Press release from Baylor College of Medicine. New Online abstract from JAMA Internal Medicine. - September 10, 2018 "This study suggests that for-profit operation, free-standing status, and large dialysis organization designation were associated with less favorable patient-reported experiences of care." Editor's note: After 17 consecutive years of reporting that the largest non-profit dialysis provider has had better mortality and hospitalization outcomes than the largest for-profit providers, the United States Renal Data System (USRDS) decided last year to stop comparing non-profit and for-profit dialysis providers. How can patients expect progress when most nephrologists refuse to acknowledge the harmful effects of their profit incentives?
	Study Identifies Key Features of Interventions to Help Patients in Need Find Jobs - Press release from St. Michael's Hospital (Toronto). - September 10, 2018
	SONG Initiative Tweets - September 10, 2018 How Should We Measure Life Participation in Transplantation? 28 Different Measures Used for Assessing Life Participation in Kidney Transplant Recipients
	An Ancient Art May Work Best to Prevent Falls in Old Age - September 10, 2018
	Naloxone Nasal Spray Works Best to Stop Opioid OD: Study - Article from HealthDay. - September 7, 2018
	The High Cost Of Hope: When The Parallel Interests Of Pharma And Families Collide - Article from Kaiser Health News. - September 7, 2018
	DaVita's Day of Music - September 6, 2018
	Does Anyone Else Have People around Them for Support but You Still Feel Alone and Unsupported... or Is It Me?! - Postings from the Dialysis Discussion Uncensored Facebook Page. - September 5, 2018
	Hypertension Drugs Could Prevent Memory Loss in Lupus Patients, Study Suggests - Press release from Rockefeller University Press. - September 5, 2018
	Comparing the Impact of Older Age on Outcome in Chronic Kidney Disease of Different Etiologies: a Prospective Cohort Study - Free, Open Access, First Online article from Journal of Nephrology. - September 5, 2018
	Anxiety, Depression, and Regret of Donation in Living Kidney Donors - Free, Open Access article from BMC Nephrology. - September 4, 2018
	Intradialytic Activities and Health-Related Quality of Life Among Hemodialysis Patients - First Online abstract from American Journal of Nephrology. - September 3, 2018
	Obituary: 'Medical Marvel' David LaFrance Had Six Kidney Transplants - Article from Ottawa Citizen. - September 1, 2018
	Too Much Sitting – Nurses' Role in Educating Patients to Reduce Health Risks of Prolonged Sedentary Time - Press release from American Journal of Nursing. - August 31, 2018
	Working While on Dialysis – It's Possible! - Article from Dialysis Clinics, Inc. - August 2018
	The $109,000 Heart Attack Bill Is Down To $332. What About Other Surprise Bills? - Article from Kaiser Health News. - August 31, 2018
	Earwax, of All Things, Poses Unrecognized Risk in Long-Term Care - Article from Kaiser Health News. - August 29, 2018
	U.S. Deaths From Suicide, Drugs Surpass Diabetes - Article from HealthDay. Related article from Kaiser Health News. - August 27, 2018
	Exploring the Relationship Between Depression and Dementia - Free, full-text, New Online perspective piece from the Journal of the American Medical Association. - August 22, 2018
	Ontario Couple Says Vacation Was Ruined after Air Canada Lost Husband's Dialysis Machine - Article from CBC News. - August 22, 2018
	High Phosphorus Predicts Diabetic Nephropathy Progression - Article from Renal & Urology News. - August 21, 2018
	Depressed Patients See Quality of Life Improve with Nerve Stimulation - Press release from Washington University School of Medicine. - August 21, 2018
	Patient Story: Post-Transplant Depression - Article from the National Kidney Foundation.
	Riley Dialysis Patients Relax with Bedside Piano Lessons - Article from WTHR (Indianapolis). - August 21, 2018
	Patient Assessment of CKD Self-Care using the CKDSC Scale in Taiwan - Accepted Articles Abstract from Nephrology. - August 20, 2018
	As of Sept. 1, 2018, Non-Citizen Patients in Colorado Will Have Access To Standard Outpatient Dialysis - Tweet from Dr. Lilia Cervantes. - August 16, 2018 Editor's note: Dr. Cervantes is at the top of my list for nephrologist of the decade.
	Exercise Shown To Improve Symptoms of Patients with Chronic Kidney Disease - Press release from University of Leicester. - August 16, 2018
	Obstructive Sleep Apnea Increases Sudden Cardiac Death in Incident Hemodialysis Patients - Online First Abstract from American Journal Of Nephrology. - August 15, 2018
	Twelve Weeks of Supervised Exercise Improves Self-Reported Symptom Burden and Fatigue in Chronic Kidney Disease: a Secondary Analysis of the 'ExTra CKD' Trial - Free, full-text, Advance Article from Clinical Kidney Journal. - August 13, 2018
	Pregnancy and Peritoneal Dialysis: an Updated Review - Full-text article from European Medical Journal. - July 12, 2018
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	Mayo Clinic Q and A: Restless Legs Syndrome
	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
	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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	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
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	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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	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
	A Prescription for Resilience - KidneyTalk podcast from Renal Support Network. - June 2018
	Sorrow's Reward - book by author and Nephrologist Robert Bear provides shocking insights into this environment, AND revelations on mortality, and the nature of courage.
	THAT DAMN DIALYSIS - book about dialysis from the patient's perspective
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	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!
	A Best Practice Position Statement on Pregnancy after Kidney Transplantation: Focusing on the Unsolved Questions. The Kidney and Pregnancy Study Group of the Italian Society of Nephrology - Free, Open Access, First Online article from Journal of Nephrology. - June 14, 2018
	Efficacy of Oral Sildenafil in Hemodialysis Patients with Erectile Dysfunction - abstract from the the Journal of the American Society of Nephrology (JASN) - November 2002
	Requiring Higher Doses of Erythropoietin Suggests Pregnancy in Hemodialysis Patients - abstract from The Nephron Journals - 1998
	Dialysis and Pregnancy: No Longer The Impossible - free full-text editorial from NDT. Related abstracts: Pregnancy in Dialysis Patients in the New Millennium: a Systematic Review and Meta-Regression Analysis Correlating Dialysis Schedules and Pregnancy Outcomes Pregnancy Outcomes after Kidney Graft in Italy: Are the Changes over Time the Result of Different Therapies or of Different Policies? A Nationwide Survey (1978-2013)
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	Latest Scientific Journal Articles on Quality of Life
	The Fund's Help Line - A Community Service Lifeline from the American Kidney Fund web site
	aakpRenalife a magazine for dialysis patients from the American Association of Kidney Patients (AAKP)
	BenefitsCheckUpRx - this fast, free, and confidential service will help you or someone you love find public and private programs to save the most money on prescription drugs - from the National Council on Aging (NCOA)
	Kidney Living is a FREE magazine for dialysis patients from the National Kidney Foundation's web site
	Live & Give Newsletter - from of the Renal Support Network web site
	The Advance Health Care Directive Act (pdf format requires Adobe Acrobat Reader) from the Network 18 web site
	CDC-TV online video resource from the Centers for Disease Control and Prevention (CDC) web site
	DaVita Patient Citizens from the DaVita web site
	Delicious! 2nd Edition- AAKP recipe cookbook
	DPC Education Center - dedicated to improving kidney patients’ quality of life and reducing the occurrence of ESRD through education and by developing awareness of dialysis and kidney disease issues, improving the partnership between patients and caregivers, and developing favorable public policy solutions.
	Employment: A Kidney Patient's Guide to Working and Paying for Treatment (pdf format requires Adobe Acrobat reader) from the Life Options web site
	Engaging Patients in Care Design - from Hospital & Health Networks
	End-of-Life Resources from the Coalition for Supportive Care of Kidney Patients
	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
	Living the Fullest Life Possible with Kidney Disease – Part One - KidneyTalk podcast from Renal Support Network
	NeedyMeds Kidney Disease Resource Page from NeedyMeds. The resource page is intended to streamline and simplify the way those with kidney disease may find assistance paying for their medications.
	PatientsLikeMe is here to help. Our researchers, doctors, and patient caregivers are committed to helping collect and share information that makes a difference.
	Quackwatch - A Guide to Health Fraud, Quackery, and Intelligent Decisions.
	Taking Care of What Matters — You - 1-page pdf from Northwest Renal Network.
	Just the Facts: Rehabilitation and Información esencial: Rehabilitación (pdf format requires Adobe Acrobat Reader) from the Life Options web site
	Staying Fit With Kidney Disease from the National Kidney Foundation (NKF)
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	Barbara's Kidney Web Site
	Care-Partners for Home Dialysis Face Book discussion page
	Communications from the Heart web site by Lori Hartwell
	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
	Parents of Children with Kidney Disease discussion page
	Polycystic Kidney Disease Face Book discussion page
	Women's Renal Failure Support Face Book discussion page
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	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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	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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	National Kidney Foundation (NKF) Health Screening Schedule
	Kidney Walk Schedule - NKF web site, e-mail NKF (800) 622-9010, (212) 889-2210, Fax (212) 689-9261
	Renal Support Network (RSN) Renal Events Calendar
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	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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	E-mail to RenalWEB on Comfort & Living A Full Life
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