Patient Resources
We encourage patients to be well informed on their treatment options. You should also be aware of other things that affect your quality of life. Consult these resources listed on this page, and don't be afraid to ask your health care team questions about your care. The more involved you are in managing your condition, the better you will feel.
There are many resources available to patients searching for information and services related to kidney disease. The list below is just a handful of items we have selected. This should not be thought of being complete. Try using an Internet search engine to find information on subjects that interest you.
Renal Support Network
The Renal Support Newtork contiues to serve the kidney community by instilling health, happiness, and hope through edication, advocacy, and awareness ... one person at a time. Check out their hoome page www.rsnhope.org.
Looking for Emergency or Disaster or Pandemic Flu Information / Resources?
Go to our Disaster Preparedness and Response page. We have several resources and links available, including the "Emergency Preparedness Resource for Dialysis Patients Booklet" developed by Network 4.
Looking for Patient Newsletters?
To go our Patient and Facility Network Newsletters page. You'll be able to find several editions of our "Network News" here, sorted in chronological order from the most current release.
Looking for a Dialysis Unit?
There are several internet based search engines that may help you find a dialysis unit. Click one of the links below. If you are in need of services, you will need to make arrangements with the unit. The Network does not have the power to force any unit or physician to treat any individual. Your involvement in your care is a critical component to ensure you have access to the quality care you should have.
- Medicare's Dialysis Facility Compare. This site lets you compare clinical indicators as well as locate a facility by city or zip code.
- Where Dialysis Homepage. This is a simple site that will find units within a radius you specify.
- Nephron's Search: Dialysis Units in the USA. This is another easy-to-use dialysis unit search engine.
- DaVita Owned DialysisFinder.com will find units within a radius of your zip code or city name, just be aware that this engine displays DaVita owned units first. For a more unbiased listing, scroll to the bottom of your screen to see "All Units".
Network 4 Booklet: Patient Safety in Dialysis Unit: The Patient's Role (format: PDF, size: 200 kb)
Network 4 Booklet: Patient Rights and Responsibilities (format: PDF, size: 287 kb)
As a person living with chronic kidney disease, you should know your rights and your responsibilities. This booklet was developed by Network 4 to provide you with some general guidance; however, you should always discuss your rights and responsibilities with your dialysis unit. Also included in this booklet is information on the Network's grievance policies and procedures.
Network 4 Brochure: Services for Patients (format: PDF, size: 583 kb)
This brochure was developed and distributed to educate the individuals receiving care in the Network 4 area about our purpose and functions. The topics in the brochure include:
- "What is ESRD Network 4?"
- "What service do the Networks provide to people living with stage five chronic kidney disease?"
- "What can Network 4 NOT do for patients?"
- "Can patients call the Network office if they have a concern or complaint about their care?"
- "Do patients have rights? If so, what are they?"
Network 4 Brochure: Key Information About Kidney Transplant (format: PDF, size: 153 kb)
The Organ Procurement/Transplantation Committee of Network 4 along with the Director of Data created this informational brochure. "Key Information About Kidney Transplant Brochure" provides information on what you should know as you explore transplantation as a treatment option, as well as the names, addresses, phone numbers and web sites to the Organ Procurement Organization and Transplant Centers within ESRD Network 4.
Network 4 Document: Frequently Asked Questions on Preparing for a Kidney Transplant (format: PDF, size: 225 kb)
This document is a great resource for anyone who has questions about kidney transplantation. It was created by Network 4 with the assistance of a member of the Organ Procurement/Transplantation Committee. You will find "Frequently Asked Questions on Preparing for a Kidney Transplant" to be in an easy-to-follow "question and answer" format. It even includes a fun quiz at the end to test your knowledge on Kidney Disease.
Educational Resource: Kids Kare ®
From their home page description: Kids Kare® was designed by kids, for kids (through the Community Problem Solving Team) with the goal of helping kids understand that organ donation is the best kind of sharing in the world!
Educational Resource: Why Am I So Thirsty (format: PDF, size: 7.53 Mb)
This booklet was developed by The End Stage Renal Disease Network of Texas. The link above will download the file from their website. It is an excellent and easy-to-understand booklet with great graphics that helps to answer the question asked by so many dialysis patients, "Why am I so thirsty?" Content includes a colorful patient education booklet in cartoon format that talks about causes of thirst and how to control it.
Educational Resource: Life Goes On After Your Kidneys Stop Working (format: PDF, size: 7.26 Mb)
This booklet was developed by The End Stage Renal Disease Network of Texas. The link above will download the file from their website. Content includes a comprehensive patient education book written at a 6th grade level, emphasizing healthy choices and decision-making on the part of the patient. Stresses the patient's role as an active member of the healthcare team. Includes chapters on modality choices, how to stay healthy on PD, diet, medicines, exercising, work and advance directives.
Document from Medicare: You Can Live - Your Guide to Living With Kidney Failure (format: PDF, size: 6.83 Mb)
This booklet has information about treating kidney failure, making the most of treatments, and living a healthier lifestyle. Revised February 2007. (48 pages)
Document from Medicare: Medicare Coverage of Kidney Dialysis and Kidney Transplant Services (format: PDF, size: 477 kb)
This booklet has information about Medicare coverage for people with End-Stage Renal Disease (permanent kidney failure treated with dialysis or a transplant). (56 pages)
OVR Resource: Pennsylvania's OVR Website
The link above will take you to the Pennsylvania Department of Labor and Industry Resource page for Pennsylvanians with disabilities. Click on the "Office of Vocational Rehabilitation (OVR)" link to learn more on their site.
OVR Resource: Delaware's OVR Website
The link above will take you to the Division of Vocational Rehabilitation for the State of Delaware.
OVR Resource: Life Options - A Rehabilitation Resource Center
The link above will take you to the home page for "Life Options". This site provides several documents and resources materials for patient rehabilitation.
Educational Resource: Kidney School
Kidney School is a free service from Life Options. It provides on-line and interactive kidney educational materials. Designed to help people learn to manage their disease, Kidney School is tailored to each visitor, and each of the 16 "30-minute modules" creates a Personal Action Plan.
Educational Resource: Home Dialysis Central
Home Dialysis Central (from the Medical Education Institute) offers resources and support for patients and professionals interested in peritoneal dialysis and home hemodialysis. Find a clinic that offers home dialysis, write to your legislator, read patient stories, post to a moderated message board, and more.
Educational Resource: National Kidney Foundation (NKF) - Patient Page
The National Kidney Foundation provides a lot of useful information for the Dialysis Patient. Browse their site for information on chronic kidney disease, dialysis and much more.
Educational Resource: American Association of Kidney Patients (AAKP) Homepage
The Americal Association of Kidney Patients (AAKP) is a national non-profit organization founded by kidney patients for kidney patients. The AAKP strives to educate and improve the health and well-being of chronic kidney disease (CKD) patients, those on hemodialysis, peritoneal dialysis and transplant recipients.
Educational Resource: I Hate Dialysis
This informational and fun resource was created by patients for patients. As their slogan goes, "We are NOT negative, we just HATE dialysis." There are games to play, chat rooms, forums and more.
Find Dialysis Unit and Compare Outcomes: Dialysis Facility Compare
Dialysis Facility Compare not only helps you to find a dialysis center near you and gives you general information on that center, but it also lets you review quality indicators like "anemia", "hemodialysis adequacy", and "patient survival".
Social Resource: Renal Romance
This site was created to help dialysis patients find companionship and romance on the 'net. Make new connections.
Education and Advocacy Resource: DaVita Patient Citizens
With more than 20,000 dialysis and pre-dialysis patients making up the member of the DaVita Patient Citizens, they are working to improve the quality of life for all dialysis patients through education and advocacy. DaVita Patient Citizens is a nationwide, non-profit, patient-led dialysis organization with membership open only to dialysis and pre-dialysis patients and their families. DaVita Patient Citizens was originally funded with a grant from DaVita, but now is generously funded by numerous sources. It is an independent in its governance, formulation of policy and actions, and most of its Board members are dialysis patients.
Kidney Search Engine: Kidneyoogle
Kidneyoogle is a dialysis only search engine powered by google. This engine will only search sites that are totally related to kidney disease.
