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Chronic Kidney Failure Educational Series
Information for New Patients
Dialysis Facility Compare
Dialysis Options
Vascular Access
Medicare Part D - Prescription Drug Plan
Nutrition
Patient Safety
Staying Active
Employment
Transplantation
Additional Resources
Chronic Kidney Failure Educational Series
The Patient Advisory Committee is proud to present the first of several releases of the new educational series entitled Chronic Kidney Failure: A Guide to Better Living. This series is based on the popular booklet formerly known as Meeting the Kidney Challenge and includes updated, current information and resources. Each document is written at an 8th grade or lower reading level, and all are available for download and may be reproduced freely. Visit the site often for new additions to the series.
Information for New Patients
New Patient Orientation Packet
The Network Coordinating Center sends all new dialysis patients an orientation packet. If you have not received this packet, you can download the following resources which are included in this packet:
The Medicare Coverage of Kidney Dialysis and Kidney Transplant Services
Preparing for Emergencies: A Guide for Patients on Dialysis
You Can Live: Your Medicare Guide for Living With Kidney Failure
Dialysis Facility Compare
The Dialysis Facility Compare website can help you compare dialysis facilities and choose the one that is right for you. If you are a patient or someone helping a patient make decisions about his or her healthcare, the DFC website can help you...
- Locate a dialysis facility
- Review the services and performance of facilities
- Learn more about kidney disease and dialysis
- Learn more about Medicare coverage of dialysis and transplantation
Dialysis Options
Kidney failure is treated either with dialysis or transplantation. There are several types of dialysis. Each type is different and each requires certain changes in your life. Not all treatment options are suitable for every patient because of his/her disease, physical or emotional condition, family situation, or lifestyle needs. The educational series Chronic Kidney Failure: A Guide to Better Living offers complete information about the various treatment options. An additional choice you have the right to make is to not do treatment at all or to stop treatment when you determine it is not providing you with the quality of life you require. Visit the Kidney End-of-Life Coalition website Patient and Family Education page for more information and resources.
Vascular Access
MARC is dedicated to quality improvement in the dialysis facility, but we can't do it without you! You are the most important person on your healthcare team, and it is extremely important that you do what the doctor orders. Receiving dialysis for the amount of time prescribed by your doctor can make positive changes in your healthcare. The staff at your facility realize that staying on dialysis 4 hours a day, 3 days a week is very difficult, but very necessary to keep you feeling good!
Sometimes it is easy to give up on trying to understand medical terms that physicians and nurses often use. Fistulas are much more effective than catheters. While no one wants to be on dialysis, physicians find that fistulas are less likely to cause problems in the long run. Just to demonstrate, let's look at the pros and cons of a fistula.
Pros
- Decreased chance of infection
- Decrease chance of hospitalization
- Dialysis takes less time because the blood flows faster through a fistula or graph.
Cons
- Needle stick
- May take time to develop
- Not available to all patients due to medical condition
If you do not have a fistula or graft, talk to your physician about how you can get one. Educational information about fistulas can be found in the Fistula First section of our website.
Medicare Part D - Prescription Drug Plan
Beginning January 1, 2006, new Medicare prescription drug plans will be available to people with Medicare. For more information visit our Medicare Prescription Drug Plan webpage.
Nutrition and Chronic Kidney Disease
Patients under the care of a nephrologist and who see a registered dietitian for nutrition therapy prior to starting dialysis are often in better health and have fewer nutritional complications when they start dialysis than those patients who do not receive that prior care. Click here for more information on nutrition and CKD, including handouts for patients and professionals. Following are additional resources:
American Association of Kidney Patient's Nutrition Counter: A Reference for the Kidney Patient
American Kidney Fund's Tips for Healthy Eating
National Kidney Foundation's Nutrition & Diet Resources
The DaVita Diet Helper makes planning, preparing, and tracking kidney-friendly meals easy.
Patient Safety
To find out how you can help maintain a safe environment in your dialysis facility, view the Patient Safety Tip Sheet.
Staying Active
How can you live a long and full life on dialysis? By having a positive attitude, getting answers, and taking action to manage your own health. When you have a chronic disease, you have a new job: learning how to be a partner in your own healthcare. Kidney School is a brand new learning center on the Internet to help you do just that.
When you visit the Kidney School website, you can choose what you want to learn about, for FREE, 24 hours a day.
For FREE, research-based education materials, visit the Life Options website, or call (800) 468-7777. Life Options is supported by Amgen Renal Advances and administered by the Medical Education Institute of Madison, Wisconsin.
Employment
Many dialysis patients work, volunteer, or go to school. Although sometimes patients have to change their schedules for work, patients that do work find they have better quality of life and improved treatment outcomes. You might be asking yourself, "Why work?"
- Often people that work get a supplemental insurance policy that will assist paying medical bills
- Employers cannot legally discriminate against persons with ESRD. Many employers are willing to make accommodations for work.
- Working and exercising helps people feel better.
- You will not lose your Medicare benefit based on End-Stage Renal Disease if you work.
Talk to your social worker about local resources that assist persons wanting to work. Contact Life Options Rehabilitation Program @ (800) 468-7777 or visit their website at www.lifeoptions.org.
Call your state Vocational Rehabilitation Center at the numbers listed below:
- Maryland Division of Rehabilitation Services: 888.554.0334 or www.dors.state.md.us
- Virginia Department of Rehabilitation Services: 800.552.5019 or www.vadrs.org
- West Virginia Division of Rehabilitation Services 800.642.8207 or www.wvdrs.org
- Washington DC: Rehabilitation Services Administration:202.442.8400
New Ticket to Work regulations released!
The Social Security Administration (SSA) announced improvements to the Ticket to Work Program. These changes were published in the Federal Register on May 20, 2008, and went into effect on July 21, 2008. Download an overview of the Ticket to Work Program and its improvements, or obtain additional information on the Program on the SSA's website at:
http://www.ssa.gov/work/newregs.html
http://www.ssa.gov/work/whatsnew.html
Employment Opportunities!
The SSA plans to hire a number of new employees to fill a variety of positions nationwide before the end of June 2010. This includes recruiting qualified individuals with disabilities and veterans. Jobs are advertised through USAJOBS. Each job advertisement contains instructions on how to apply.
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Transplantation
Your dialysis facility should talk to you about the types of therapy that can do the work your kidneys used to do. Your treatment options include:
- Hemodialysis (HD)
- Peritoneal Dialysis (PD)
- Kidney Transplant
When you started dialysis, you should have received information about kidney transplant. Every year your dialysis unit must complete a long-term care plan for every patient. This care plan should include information from your kidney doctor (nephrologist) about whether you are healthy enough (medically suitable) to receive a kidney transplant. Also, a staff member should ask you whether you are happy with the type of dialysis you are using, and whether you are interested in being referred to a transplant center for evaluation. If living donor or cadaveric kidney transplant is something you want to learn more about - TALK TO YOUR NEPHROLOGIST, SOCIAL WORKER, OR HEAD NURSE TO GET MORE INFORMATION!
Here are some questions you should ask if you are considering a kidney transplant:
- How much will a transplant cost?
- Will my insurance pay for my transplant?
- What will my medications cost?
- Can I catch a serious disease like AIDS if I get a kidney transplant?
- How can I be sure I will get the right kidney for me?
- How long will I have to wait for a transplant?
- What are the risks involved if I have surgery?
- Will I have a lot of pain? How long will I be in the hospital?
- Will I lose my disability benefits?
- Can a member of my family, or a friend, give me a kidney?
- What kind of outcomes can I expect after a transplant?
The United Network for Organ Sharing's (UNOS) Transplant Living website is also available to assist patients and their families before, during, and after transplantation.
Return to topAdditional Resources
Dialysis Keeps People with Kidney Failure Alive (formerly "Know Your Number")
This CMS brochure provides information on how to check the adequacy of your hemodialysis, and what to do if it is not adequate. Call CMS at 1-800-Medicare to request a copy.
Emergency Preparedness
Centers for Medicare and Medicaid Services guide for patients (in English and Spanish) on general emergency/evacuation planning and information for bioterrorism/disaster planning are available for download. Visit our emergency preparedness page to download the guide, as well as additional resources. Printed copies of the guide are available from the CMS Publication Mailing List at http://pubordering.cms.hhs.gov/mailinglist/, or by calling CMS at 1-800-Medicare .
End-of-Life Care
In 2005, MARC partnered with a number of organizations on a national collaborative effort, which resulted in the formation of the Kidney End-of-Life Coalition. Visit the Kidney End-of-Life Coalition website's Patient and Family Education page for more information and resources.
Advance Care Planning: For the Dialysis Patient and Their Family
This brochure was developed by the MARC and the Academy for Educational Development, with funding from CMS, to serve as a guide for patients and their families as they discuss options for future care. If you would like copies of the brochure, download an order form for the Advance Care Planning brochure and submit it to the Network office.
ESRD Conditions for Coverage (Federal Regulations)
On April 15, 2008, the Centers for Medicare & Medicaid Services released the revised Conditions for Coverage for ESRD Facilities (PDF 1.3MB) (formerly Subpart U Regulations). This final rule reflects the advances in dialysis technology and standard care practices since the requirements were last revised in their entirety in 1976. The provisions of the final rule are effective October 14, 2008.
Medicare Issues & Answers Brochure
The Medicare Issues and Answers brochure clarifies misconceptions regarding Medicare coverage and answers several commonly asked questions.
Nephrology Oral History Project
The Nephrology Oral History Project seeks to document renal-related healthcare from the 1950s to the present through recorded interviews with sentinel nephrologists and nephrology-related individuals. These oral histories focus on the development and innovations of early dialysis therapy and the impact dialysis has had on the care of patients and the practice of nephrology.
Patient Grievance Policy Brochure
The Patient Grievance Policy brochure contains the rights and responsibilities of an ESRD patient, the grievance procedures and the Network responsibilities to the ESRD patient. A Patient Grievance/Complaint Form is also available.
Helpful Links
American Association of Kidney Patients Brochure
National Kidney Foundation: The Voice, The Home, The Hope
American Kidney Fund
Renal Support Network
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