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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).
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The
Views of Patients and Carers in Treatment Decision Making for Chronic Kidney
Disease: Systematic Review and Thematic Synthesis of Qualitative Studies
- Free, full-text article from British Medical Journal. - February 19, 2010
"The experiences of other patients greatly influenced the decision
making of patients and care (givers)." |
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Depression
as a Potential Explanation for Gender Differences in Health-Related Quality
of Life among Patients on Maintenance Hemodialysis - Issue-in-Progress
abstract from Nephron Clinical Practice. - February 19, 2010 |
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Happiness
Makes for a Healthy Heart - Article from Reuters. - February 18, 2010 |
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Kidney
and Brain—a Renal Perspective of ‘Les Liaisons Dangereuses’
- Free, full-text, Advance Access editorial commentary from NDT. - February
17, 2010 |
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Nurse-Patient
Communication While Perfroming Home Dialysis: The Patients' Perceptions
- Abstract from Journal of Renal Care. - February 15, 2010 |
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Physical
and Psychological Burden of Chronic Kidney Disease among Older Adults
- Issue-in-Progress abstract from American Journal of Nephrology. - February
13, 2010 |
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Effects
of Interleukin-6 on Depression Risk in Dialysis Patients - Issue-in-Progress
abstract from The American Journal of Nephrology. - February 13, 2010 |
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Taking
Peritoneal Dialysis to Sea: Jean Louis Clémendot Crosses Atlantic
Alone; Eyes Tour of the US East Coast and then the Pacific! - Blog entry
by Bill Peckham from Dialysis from the Sharp End of the Needle. - February
12, 2010 |
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Quality
of Life and Alternate Nightly Nocturnal Home Hemodialysis - Abstract
from Hemodialysis International. - February 11, 2010 |
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Survival
Benefit with High-Intensity End-of-Life Approaches - Press release from
the University of Pittsburgh Schools of the Health Sciences. - February
11, 2010 |
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Urgent
Need for Four-Wheel-Drive Rides for Dialysis Patients Continues in Mid-Atlantic
Region - News item from USA Today. - February 11, 2010 |
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Being
Bored Could Be Bad for Your Health - Article from AP. - February 10,
2010 |
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End-of-life
Care Must Reflect Patient Wishes and Values - Press release from Brown
University. Article from HealthDay.
(Also see section below.) - February 9, 2010 |
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The
Right Start Program: Do You Remember How You Felt When You Started Dialysis?
- KidneyTalk! podcast from Renal Support Network. - February 9, 2010 |
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Youth
Advocate in Connecticut Uses Motivational Skills To Cope with Dialysis Sessions
- Article from The New Haven Register.. - February 9, 2010 |
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The
Doctor Will Never See You Again - Article from The Wall Street Journal.
- February 8, 2010
Editor's note: The article concludes with the well-known
case that went to a U.S. Court of Appeals concerning Dr. John Bower, a
Mississippi nephrologist. Related links from The Renal Network, Inc.:
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Brain
Damage Seen in People With Severe Sleep Apnea - Article from HealthDay.
- February 3, 2010 |
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In
UK, Petition Campaign Gains Momentum To Keep Dialysis Clinic Open Longer
Hours for Working Patients - Article from Scarborough Evening News.
- February 3, 2010 |
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Diabetes
Patients Rank Health Concerns Differently Than Their Doctors - News
release from the University of Michigan Health System. - February 2, 2010
Editor's
Note: I believe a similar study on dialysis patients and nephrologists
would show ENORMOUS differences on which health conditions each group
considers most important.
I think the nephrologists
would name their usual biochemical markers and the patients would list
several quality-of-life measures. This is the big "disconnect"
in ESRD care. |
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Patient
Views About Treatment of Stage 5 CKD: A Qualitative Analysis of Semistructured
Interviews - Article in Press abstract from the American Journal of
Kidney Diseases. - February 1, 2010 |
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Poker's
Jennifer Harman Will Donate 1 Percent of Winnings to NephCure Foundation
- Article from CardPlayer.com. - February 1, 2010 |
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"I'm
Sorry": Why Is That So Hard for Doctors To Say? - Article from
American Medical News. - February 2010 |
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World
Kidney Day 2010: Diabetic Kidney Disease—Act Now or Pay Later
- Article from American Journal of Kidney Disease - February 2010 |
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Sexual
Function in Women Receiving Maintenance Dialysis - Abstract from Hemodialysis
International. - January 2010 |
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Pennsylvania
Man Overcomes Cancer and Kidney Transplant To Compete in Winter World Transplant
Games - Article from Lehigh Valley Live. - January 31, 2010 |
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Reports
Says N. Korean Leader Kim Jong-il 'Undergoing Regular Kidney Dialysis'
- Article from Chosun.com. - January 29, 2010 |
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Even
Mild Kidney Disease Deteriorates a Child's Quality of Life - Press release
from Johns Hopkins Medical Institutions. - January 28, 2010 |
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Gout
and CKD - A New Era of Hope - Article from Peter Laird, MD on KidneyTimes™.
- January 2010 |
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Severe
Complications of Diabetes Higher in Depressed Patients - Press release
from the University of Washington. - January 27, 2010 |
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Transitioning
out of Childhood for Young People with CKD - KidneyTalk™ podcast
from Renal Support Network. - January 26, 2010 |
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More
High Blood Pressure Worries: It's Linked to Dementia - Article from
AP. - January 26, 2010 |
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Medical
Marijuana Patients Denied Organ Transplants - Blog from The Huffington
Post. - January 25, 2010
In related news: Los
Angeles to close hundreds of marijuana vendors |
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Doctors
Delay Talking About End-Of-Life Care - Article from Kaiser Health News.
- January 25, 2010 |
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Arranging
Your Life When Dialysis Comes Home - Article from Home Dialysis Central.
- January 20, 2010 |
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Sleep
Quality, Mood, Alertness and Their Variability in CKD and ESRD - Issue-in-Progress
abstract from Nephron Clinical Practice. - January 20, 2010 |
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Jack
Black Gives Back at RSN Renal Teen Prom - Press release and video
from ABC7. - January 18, 2010 |
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PPS
Comments to Medicare show the way forward: higher dialysis doses for better
health - Blog entry from DSEN. - January 14, 2010
READ THESE PATIENT COMMENTS!! Summary
provided by Bill Peckham from Dialysis from the Sharp End of the Needle.
Bill's comments:
"Story, after story of being cured of the symptoms of too little
dialysis. All of the symptoms that people mistakenly attribute to dialysis,
are reported cured. And not one of these commentators talk of urea."
"There are over 90 times as many people on conventional incenter
dialysis as are on frequent home hemo, yet I can think of very few who,
by any stretch, wrote to endorse their care. Only those at home, dialyzing
more frequently, were moved to do so. They know the truth, their stories
tell of a better way." |
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End-of-Life
Care Preferences and Needs: Perceptions of Patients with Chronic Kidney
Disease - Press release and CJASN Express abstract.
- January 14, 2010 |
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End
of Life Wishes May Not Be Guiding Principle - Article from MedPage
Today. - January 14, 2010
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NxStage
Wonkery on the Freedom Cruise - Blog entry by Bill Peckham from Dialysis
from the Sharp End of the Needle. - January 13, 2010 |
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Foreign
Travel on Dialysis Is Something You Can Do - Blog entry by Bill Peckham
from Dialysis from the Sharp End of the Needle. - January 10, 2010 |
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Latest
Scientific Journal Articles on Quality of Life - list compiled by RenalWEB's
Journal
Watch |
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AAKP
Diet Tips and Bits from the American Association of Kidney Patients
(AAKP) web site |
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The
Fund's Help Line - A Community Service Lifeline from the American Kidney
Fund web site |
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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 |
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Kidney
Beginnings (pdf format requires Adobe
Acrobat reader) - from the American Association of Kidney Patients
(AAKP) web site |
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Kidney
Beginnings: The Magazine - from the American Association of Kidney Patients
(AAKP) web site |
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aakpRENALIFE
- from the American Association of Kidney Patients (AAKP) web
site |
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The
Advance Health Care Directive Act (pdf format requires
Adobe Acrobat Reader)
from the Southern California Renal Disease Council web
site |
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CDC-TV
online video resource from the Centers for Disease Control and Prevention
(CDC) web site |
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DaVita
Patient Citizens from the DaVita web
site |
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Employment:
A Kidney Patient's Guide to Working and Paying for Treatment (pdf
format requires Adobe
Acrobat reader) from the Life Options web
site |
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Empowering
Caregivers - Choices, Healing, Love, For All Articles, emotional &
spiritual support, tools for caregivers |
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End-of-Life
Resources from the Kidney End-Of-Life Coalition web
site |
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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 |
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Keeping
Fit On Dialysis from the UK National Kidney Foundation web
site |
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Keeping
Your Job When You Need Dialysis from the Home Dialysis Central
web site |
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Kidney
Health Podcast Series from the American Kidney Fund (AKF) web
site |
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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 |
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KidneyTalk
from the Renal Support Network web site |
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Life Options Teaching Tools from Life
Options |
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Managing
your Life with Kidney Failure from the National Kidney Foundation web
site |
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The
National Kidney Foundation’s, People
Like Us is offering a series of monthly educational telephone forums
entitled Coffee House Conversations™
telephone series. |
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PatientsLikeMe
is here to help. Our researchers, doctors, and patient caregivers are committed
to helping collect and share information that makes a difference. |
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Quackwatch
- A Guide to Health
Fraud, Quackery, and Intelligent Decisions. |
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Just
the Facts: Rehabilitation and Información
esencial: Rehabilitación (pdf format requires
Adobe Acrobat Reader)
from the Life Options web site |
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renalinfo
web site from Baxter International
Inc. |
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Spanish
Resource Guide -
list of resources in Spanish from the American Nephrology Nurses Association
(ANNA) - September 2006 |
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Staying
Fit With Kidney Disease from the National Kidney Foundation (NKF)
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