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.
Immunization Resources Moved!
We moved our immunization information (flu, pneumonia and hepatitis b) to a new page on our website. Visit our IMMUNIZE homepage
Patient Tips for Healthy Living -- http://www.esrdnetwork8.org/renal-disease-patient-information/healthy-tips.asp
[provided with permission of ESRD Network 8]
In an effort to continue providing educational information and resources to patients, Network 8 has developed “Patient Tips for Healthy Living”. Our PAC (Patient Advisory Committee) which consists of kidney patients throughout our region has verbalized the need for patients to receive short and easy to read information regarding their health and diet. Another patient concern is the need for dialysis friendly recipes. In response to their concerns we are beginning to distribute “Patient Tips for Healthy Living”. This will be a one page (front and back) tip sheet that will focus on a specific topic each edition and will be distributed quarterly to Network 8 dietitians.
- First Edition: Learning to Control Your Fluids
- Second Edition: Plan to Enjoy Holiday Parties
- Third Edition: What You Need to Know About Phosphorus
- Fourth Edition: Fast Food Tips
- Fifth Edition: What You Need to Know About Phosphorus
  The Renal Network is aware of recent issues related to Bed Bugs. Below are some resources that may help you with this topic.
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The Renal Network is pleased to provide the following articles. These stories were written by patients, for patients. Feel free to print and display them in your patient areas, or pass them around to people you feel would benefit or enjoy reading about "Fistula Journeys".
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For Immediate Release: June 28, 2011 About the movie"We created this short, high-impact message to help dialysis patients understand why replacing a hemodialysis catheter with a fistula is so important," explained MEI Executive Director Dori Schatell. The movie quickly and graphically addresses:
Dialysis professionals can use the movie to start a conversation with patients about converting from a catheter to an arteriovenous fistula (AVF). The movie can be quickly downloaded or sent via email, and is available for mobile devices via YouTube™ (www.youtube.com/watch?v=VmOG2TzO7dk). A DVD will soon be available for a small fee; submit a request via the website (www.lifeoptions.org/letstalk/). Funding for the project was provided by the Fistula First Breakthrough Initiative, Amgen, and Genzyme. Increasing fistula useResearchers estimate that as many as 68,653 lives could be saved in the U.S. solely by reducing dialysis catheter use to less than 7%. The decision to allow creation and use of an AVF is in patients' hands. Gaining patient cooperation to convert from a catheter to a fistula is literally a matter of life and death. About Life OptionsLife Options is a program of the non-profit Medical Education Institute, Inc. Founded in 1993, Life Options is dedicated to helping people with chronic kidney disease (CKD) live long and live well. All Life Options materials are non-commercial and have been reviewed for accuracy by a multidisciplinary panel of experts. For more information about the non-profit Medical Education Institute and its programs, including Life Options, visit www.meiresearch.org. |
Dialysis Patient and the ESRD Bundle
Several resources are available to help dialysis patients better understand the new Medicare bundled payment for dialysis services and how it may affect their care.
- Dialysis Patient Citizens: ESRD Bundle Information -- Explains what the bundle is and provides additional resources, like the "Patient Guide to the ESRD Bundle" and a brochure for the guide.
- Home Dialysis Central: Medicare Bundle Q&A -- From Home Dialysis Central, this PDF document offers information, contacts and additional resources.
- NKF's Kidney Health Care Coverage: Understanding the New Medicare Rules About Dialysis Services and Payments -- The website provided by the National Kidney Foundation, explains the ESRD Bundle using a Question and Answer format.
Patient Rights and Responsibilities
Click this link to go to our Patient Rights and Responsibilities page. There you will find information on: "Respect, Privacy and Confidentiality"; "Information, Education, and Counseling"; "Informed Consent, Transfer, and Refusal of Treatment"; "Knowledge of Facility Services"; "Emergency Care"; and "Grievance Mechanism". We also have this information in Spanish!
Network 4 Booklet: Patient Rights and Responsibilities (format: PDF, size: 262 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.
Network 4 Brochure: Services for Patients (format: PDF, size: 635 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?"
Vocational Rehabilitation Links
The following links are provided to assist you with securing and maintaining employment and independence:
Ticket to Work Program
Social Security's Ticket to Work Information
Pennsylvania Office of Vocational Rehabilitation
Delaware Division of Vocational Rehabilitation
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.
- 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: 160 kb)
PATIENT BULLETIN BOARD PACKET (updated July 2011)
- Network 4 Poster (format: PDF, size: 138 kb) -- best if printed on 11x17" paper -- provides a summary of the Network, our grievance procedure and contact information
- Patient Rights and Responsibilities Brochure (format: PDF, size: 262 kb) -- prints on 8.5x11" paper
- CMS Dialysis Facility Compare Brochure (format: PDF, size: 1.9 mb) -- best if printed on legal (8.5x14") paper
- Network 4 Website Flyer (format: PDF, size: 163 kb) -- prints on 8.5x11" paper
- Getting Back to Work Brochure (format: PDF, size: 574 kb) -- prints on 8.5x11" paper
- Patient Safety Brochure (format: PDF, size: 161 kb) -- prints on 8.5x11" paper
- 5 Reasons to Consider an A-V Fistula Pamphlet -- electronic resource not available
- Services for Patients Brochure (format: PDF, size: 635 kb) -- best if printed on legal (8.5x14") paper
- Transplant Education Document (format: PDF, size: 528 kb) -- prints on 8.5x11" paper
- ABCs of Fistula Placement Brochure -- inside (format: PDF, size: 8.7) -- outside (format: PDF, size: 8.5 mb)
- How Do I Look Brochure -- inside (format: PDF, size: 2.9) -- outside (format: PDF, size: 2.8 mb)
Educational Resource: How to Have a Good Future with Kidney Disease
From Life Options, this free toolkit will help you educate individuals living with chronic kidney disease from Stage 3 through Stage 5. Topics include:
- Coming to Terms
- Kidneys and Kidney Disease
- Slowing Kidney Disease
- Transplant
- Dialysis and Your Lifestyle
- Your Money and Your Life
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.
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".
Document from Medicare: Dialysis Facility Compare Patient Education Brochure (format: PDF, size: 188 kb) -- This brochure explains what Dialysis Facility Compare (DFC) is and how you can use its features to review demographic information and outcomes data.
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: Dialysis Patient Citizens
With more than 20,000 dialysis and pre-dialysis patients making up the member of the Dialysis Patient Citizens, they are working to improve the quality of life for all dialysis patients through education and advocacy. Dialysis Patient Citizens is a nationwide, non-profit, patient-led dialysis organization with membership open only to dialysis and pre-dialysis patients and their families. Dialysis 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.
