RenalWEB Home Page
Last Updated 02/12/17

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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CJASN Express Abstracts - February 2017

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Open Access February 2017 Issue of Clinical Kidney Journal
Full-Text Articles Include - February 2017

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The 3-Year Incidence of Gout in Elderly Patients with CKD - JASN Express Abstract - February 2017

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Language Barriers May Interfere with Access to Kidney Transplantation - Press release and CJASN Express abstract from the American Society of Nephrology. Article from HealthDay. - February 9, 2017

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Transformation of 5-D Itch Scale and Numerical Rating Scale in Chronic Hemodialysis Patients - Free, Open Access article from BMC Nephrology. - February 8, 2017

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Poor and Less Educated Suffer the Most from Chronic Pain - February 8, 2017

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Mortality, Hospitalization, and Quality of Life among Patients with Hepatitis C Infection on Hemodialysis - Free, full-text CJASN article. - February 7, 2017

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Researchers Study Care for Undocumented Immigrants with Kidney Failure - Press release from the University of Colorado Anschutz Medical Campus. Press release, full-text New Online article and editorial from JAMA Internal Medicine. Article/video from MedPage Today (registration required, but free).- February 6, 2017

"Conclusions and Relevance: Undocumented patients with ESRD experience debilitating, potentially life-threatening physical symptoms and psychosocial distress resulting from emergent-only hemodialysis. States excluding undocumented immigrants with ESRD from scheduled dialysis should reconsider their policies." 

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Effect of Intensive Blood Pressure Control on Gait Speed and Mobility Limitation in Adults 75 Years or Older – A Randomized Clinical Trial - New Online abstract from JAMA Internal Medicine. - February 6, 2017

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Patient Satisfaction with Nurse LED Chronic Kidney Disease Clinics: a Multicenter Evaluation - Early View abstract from Journal of Renal Care. - February 3, 2017

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Aid-In-Dying Advocates, Disheartened By Supreme Court Pick, Brace For New Fight - News Summay from Kaiser Health News -  February 2, 2017

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Publications on the Management of Gout - January 31, 2017

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American Society of Nephrology Statement on US President Donald J. Trump's Executive Order on Immigration - Press release. News summary from Kaiser Health News. - January 31, 2017

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Novel Treatment Protocol for Ameliorating Refractory, Chronic Pain in Patients with Autosomal Dominant Polycystic Kidney Disease - Article in Press abstract from Kidney International. - January 31, 2017

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Mayo Clinic Researchers Find Mental Activities May Protect against Mild Cognitive Impairment - January 30, 2017

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Robots Could Help Solve Social Care Crisis, Say Academics - January 30, 2017

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Loss of Executive Function after Dialysis Initiation in Adults with Chronic Kidney Disease - Article in Press abstract from Kidney International. - January 27, 2017

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AAKP Announces 2017 Medal of Excellence Award Winners - January 27, 2017

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Serious Fall Injuries Before and After Initiation of Hemodialysis Among Older ESRD Patients in the United States: A Retrospective Cohort Study - Article in Press abstract from American Journal of Kidney Diseases. - January 27, 2017

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Oral Devices Reduce Sleep Apnea but May Not Affect Heart Disease Risk Factors - January 27, 2017

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A Lifetime of Discovery - KidneyTalk podcast from Renal Support Network. - January 26, 2017

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Depression Is Under-Treated in Patients Receiving Chronic Dialysis - Press release and CJASN Express abstract #1 and abstract #2 from the American Society of Nephrology. Article from HealthDay. - January 26, 2017

Editor's note:
Can a pill fix the fact that nephrologists and for-profit dialysis providers are shepherding patients into treatment regimens and insurance plans that destroy the meaning and purpose of their lives? How do you deal with a system of care and a professional medical society that after 50 years places virtually no emphasis on patient rehabilitation and employment?

It should be called the American Society of Junk-Bond and Zombie Nephrology. It has an enormous blind spot for its own financial conflicts of interest which non-American nephrologists can easily recognize.

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Free, Open Access Articles from BMC Nephrology - January 26, 2017

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Cognitive Decline and Its Risk Factors in Prevalent Hemodialysis Patients- Articles in Press Abstract from American Journal Of Kidney Diseases - January 25, 2017

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Should a Mental Disability Keep Patients off Organ Transplants Lists? - Article from HealthDay. Free, full-text perspective piece from The New England Journal of Medicine. - January 25, 2017

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Lung Cancer Patients with Anxiety, Depression Die Sooner: Study - January 24, 2017

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Free, Full-Text, Issue-in-Progress Articles from Blood Purification - January 24, 2017

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Patients in Haemodialysis Experienced Uraemic Pruritus as a Dual Phenomenon - Early View abstract from Journal of Renal Care. - January 23, 2017

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Tackling Patients' Social Problems Can Cut Health Costs - Article from Kaiser Health News. - January 23, 2017

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Psychosocial Aspects of Children and Families Treated with Hemodialysis - Early View Abstract from Hemodialysis International. - January 23, 2017

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Can Patient Satisfaction and Quality Care Coexist? - Article from Medical Economics. - January 23, 2017

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Dialysis Modality Choice in Elderly Patients with End-Stage Renal Disease: a Narrative Review of the Available Evidence - Free, Full-Text Article from NDT. - January 20, 2017

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Home Dialyzors’ Thoughts About Involuntary Discharge - Posting from the KidneyViews blog. - January 19, 2017

"Dialysis is the only area of healthcare where patients have to live with the threat of being labeled non-compliant if they speak up about the quality of care. Not only the threat of being discharged but also the threat of being removed from transplant lists...sometimes based on information and reports from techs...not even an MD. No one should be afraid to speak up for their best interests. Dialysis patients often are.”

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Yemen's Dialysis Patients Fear for Their Lives Amid Medical Shortages - Article from ReliefWeb. - January 19, 2017

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Too Much Sitting Ages You Faster - Article from HealthDay. Press release from UC San Diego. - January 18, 2017

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Free, Full-Text Articles from the Journal of the American Medical Association - January 17, 2017

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Nashville's Public Housing Agency Opens Its First Dialysis Clinic For Residents - Article from Nashville Public Radio. - January 17, 2017

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Association Between Patient-Centered Medical Homes and Adherence to Chronic Disease Medications: A Cohort Study - Abstract from Annals of Internal Medicine. - January 17, 2017

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Effects of Neuromuscular Electrical Stimulation during Hemodialysis on Peripheral Muscle Strength and Exercise Capacity: a Randomized Clinical Trial - Article in Press abstract from Archives of Physical Medicine and Rehabilitation. - January 14, 2017

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Integrating Supportive Care Principles into Dialysis Decision-Making: A Primer for Palliative Medicine Providers - Article in Press abstract from Journal of Pain and Symptom Management. - January 6, 2017

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Albuminuria and Cognitive Performance: New Evidence for Consideration of a Risk Factor Precursor Model From the Maastricht Study - Free, Full-Text Article from American Journal of Kidney Diseases - November 17, 2016

 
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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
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
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
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
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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 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! 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

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.
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
Dialysis & Kidney Disease Face Book discussion page
Care-Partners for Home Dialysis Face Book discussion page

Communications from the Heart web site by Lori Hartwell

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
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
Ask Beth (Beth Witten, MSW, ACSW, LSCSW) from the Life Options web site
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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