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For Patients and Families

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The Network provides services to help ensure transplant and end stage renal disease (ESRD) patients are receiving the best care possible. We do this by:

  • Working with dialysis and transplant facilities to improve the quality of care
  • Investigating patient grievances
  • Providing patient and provider education
  • And more!

We encourage you and your family to learn more about ESRD and ways that you can become involved in your treatment by looking at topics on this website. Equally important, we urge you to talk to your care team (physicians, nurses, social workers, dietitians, and technicians) and get involved in the decision-making process so that you will find your own best approach to treatment.

Video iconThe National Coordinating Center (NCC) created a video of a member of the Network's Patient Advisory Council (PAC) that features their ESRD journey, where they garner strength from, their work with the Network, and their hope for other patients.

View Otilia's Story

Getting Back to Me: A Goal-Setting Journey (PDF)

Do you have a goal you would like to achieve? The Getting Back to Me: A Goal-Setting Journey is a workbook that can assist you with identifying personal goals and setting a plan to achieve them. This resource was developed by kidney patients and family members and designed to help restore a sense of dignity and increase self-esteem through goal-setting.

Patient Education at Your Fingertips!

This flyer includes patient educational resources available from the ESRD National Coordinating Center including New Patient Education and The Kidney Hub, a mobile web tool.

New Patient Education

We recommend all new dialysis patients review the resources available on this extensive educational webpage.

Going Back to Work or School

A Kidney Patient's Guide to Working and Paying for Treatment

This is a resource from Life Options, a program to help people live long and live well with kidney disease. This booklet is divided into three parts: Paying for treatment of kidney disease, living productively with kidney disease, and resources for individuals with kidney disease.



A Practical Guide for People with Disabilities Who Want to Go to College

This guide helps people with disabilities plan for attending  college.



Advance Care Planning

Advance care planning is making decisions about the end-of-life care you want to receive before events make this impossible. Here are some things that are important to let your family and doctors know: 

  • Who you want to make healthcare decisions for you when you can't make them.
  • The kind of medical treatment you want or don't want.
  • How comfortable you want to be.
  • How you want people to treat you.
  • What you want your loved ones to know.

Advance Directives

“Advance directive” describes two types of legal documents that enable you to plan for and communicate your end-of-life wishes in the event that you are unable to communicate: a Medical Power of Attorney and a Living Will.

  • Medical Power of Attorney allows you to appoint a person you trust as your healthcare agent (or surrogate decision maker), who is authorized to make medical decisions on your behalf if you are unable to speak for yourself.
  • Living Will allows you to document your wishes concerning medical treatments that you would or would not want if facing a serious or life-limiting illness.

Resources

The Network recognizes that patients with ESRD will have many financial concerns; however, Networks do not handle issues dealing with money or payment of bills.

Dialysis Facility Compare

What is Dialysis Facility Compare (DFC)?

Dialysis Facility Compare is a webpage on the Centers for Medicare and Medicaid Services (CMS) website. DFC allows patients to search for Medicare-approved dialysis facilities based on a city, state, or specific zip code. DFC provides data about dialysis facilities* including facility characteristics such as:

  • address and phone number
  • types of dialysis offered [in-center Hemo or peritoneal (home) dialysis]
  • whether facility offers dialysis shifts after 5 pm
  • number of dialysis treatment stations

DFC also has information about Patient Survey Ratings and Quality of Patient Care measures including:

  • Avoiding unnecessary transfusions
  • Preventing bloodstream infections
  • Removing waste from blood and nutritional status
  • Using the most effective access to the bloodstream
  • Keeping a patient’s bone mineral levels in balance
  • Avoiding hospitalizations and deaths

The DFC site also contains links to other websites, publications available for downloading, a glossary of terms, a list of useful contacts, and a kidney disease dictionary.

* Please note: There is generally some lag time between a facility opening and its information being posted on the DFC website.

Why Should Patients Use Dialysis Facility Compare (DFC)?

One of the most common uses of DFC is to search for Medicare-approved dialysis facilities close to a specific city or zip code. In addition, studies show that patients who are involved in their healthcare decisions tend to experience better health. Understanding ESRD and its treatment is a good way to get involved and the info on DFC is intended to help patients become more informed.

Do You Need Help Using the DFC Website?

Other Resources

Patients on dialysis are at a high risk for getting an infection. But there are several things you can do to minimize your chances of getting an infection.

  • Report any signs of infection to your care givers.
  • Wash your hands often, especially before and after dialysis treatment.
  • Keep your access site clean.
  • Never scratch or remove scabs from your access site.

Know where germs can be found:

  • On our hands and skin
  • In our nose and mouth
  • On the hands of your medical staff and in their noses
  • On your pet
  • Inside and outside your house
  • On surfaces and equipment

Know the signs and symptoms of an infection:

  • Redness
  • Swelling
  • Pain
  • Drainage
  • Fever
  • Chill

Make sure your caregivers:

  • Wash hands
  • Wear gloves, mask, and gown
  • Disinfect your skin before inserting needles
  • Change gloves after stopping dialysis machine and before removing needles

Infection Prevention Video

Resources

Bloodstream Infection Prevention

Patients who undergo dialysis treatment have an increased risk of infection. They are at a high risk for infection because the process of hemodialysis requires frequent use of dialysis catheters or the insertion of needles to access the bloodstream. Additionally, hemodialysis patients commonly have weakened immune systems. A weakened immune system increases the risk for infection, which, in turn, can require frequent hospitalizations and surgery, where the chance of acquiring an infection increases. The Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC) have placed a heightened focus on reducing bloodstream infections through a series of Core Interventions, which include patients becoming active members of their dialysis care team by observing staff during opportunities for hand hygiene and communicating the results of these observations to the clinical staff. In response, the Network has developed the following series of steps to accomplish our ongoing goal of improving the quality of care provided to dialysis patients. 

Step 1: Review the Clean Hands Count brochure and the Clean Hands Save Lives resource to educate yourself on the End Stage Renal Disease Conditions for Coverage (CfCs) and the CDC's protocols for infection prevention through effective hand hygiene procedures.

Step 2: See what you know with this Test Your Hand Hygiene Knowledge interactive learning module.

Step 3: Protect yourself and others from infection by starting the conversation with your dialysis care staff to improve awareness about patient safety issues in your facility.

The Dialysis Life

Network 15, in conjunction with the Network 15 Patient Advisory Council, is pleased to introduce The Dialysis Life, a series of patient-, family-, and caregiver-focused podcasts. These podcasts run 10–15 minutes in length and cover a wide range of dialysis-related topics. They feature commentary and discussion from patients, Medicare representatives, doctors, and others touched by dialysis and all speaking directly to the dialysis patient’s experience, trying to untangle the knot that is dialysis, one topic at a time.

Initial topics include:

  • Learning About Learning and Action Networks (LANs)
  • Engaging in Your Care
  • The Patient Advisory Council
  • Clinic Emergencies from the Patient Perspective 

Click below to access the first podcast in this series: 

1. Learning About Learning and Action Networks (LANs)

2. Getting to the COR of It.

3. Learning More About the Learning and Action Networks (LANs).

We hope you enjoy this series and encourage your input. Please reach out to the Network with any feedback, topic ideas, or questions by contacting Justin Carr at jcarr@hsag.com or 813.865.3457.

Resources

Protein and Albumin

Albumin is a major protein found in the blood. Most people on dialysis should try for a goal of eating 8–10 ounces of protein each day to keep albumin levels up. Getting the right amount of protein will help to:

  • build muscles
  • repair tissue
  • fight infections

Protein-rich foods include:

  • fresh meats
  • poultry (chicken and turkey)
  • fish and other seafood
  • eggs or egg whites
  • small servings of dairy products

What are my treatment options?

When your kidneys fail, you must decide on a treatment to replace kidney function. Each treatment choice has advantages and disadvantages. You may also choose to forego treatment.

Treatment options include:

  • Hemodialysis
  • Peritoneal Dialysis
  • Kidney Transplant

By learning about your choices, you can better decide what's best for you.

Resources

Vaccinations for ESRD Patients

When you are on dialysis, you are at a higher risk of getting sick with diseases such as the flu, Hepatitis B, and pneumonia, and Covid-19. Your best protection against these diseases is to receive a vaccination. Most dialysis facilities offer free vaccinations, or can work with you to find out where you can get them at little to no cost.

Resources

Influenza (Flu)

Influenza, more commonly known as the flu, is an acute virus that attacks the nose, throat, and lungs. The flu has symptoms similar to a cold: fever, aches and pains, weakness, coughing, and breathing problems. However, the flu can lead to pneumonia or death. The best way to prevent the flu is to get the flu vaccine every year.

The goal of the Increasing Vaccination Rates Quality Improvement Activity (QIA) is to achieve 85% of patients receiving the influenza vaccination.

About the flu vaccine: 

  • A flu shot is very safe, and will help protect you for the whole flu season (which can last from October through May).
  • Get a flu shot early in the flu season to give it time to work.
  • Each year the flu virus changes, so you need a new flu shot every year—even if you had the flu last year.
  • A flu vaccine can also help to prevent pneumonia.

Resources

Hepatitis B

Hepatitis B (HBV) is a serious liver infection caused by a virus. Since HBV is spread through contact with blood or body fluids, dialysis patients are at high risk. 

About the Hepatitis B vaccine:

  • The Hepatitis B vaccine is safe, effective, and your best protection against this disease.
  • Your doctor will test your blood to see if you need this vaccine. If you had Hepatitis B (and you may not know) you don’t need the vaccine.
  • A series of 3 or 4 Hepatitis B shots is needed to protect you. Some people may need additional doses.
  • In addition to preventing Hepatitis B, the Hepatitis B vaccine can also protect against a form of liver cancer.

Resources

Pneumonia and Pneumococcal Disease

Pneumonia is a lung infection. It can be caused by a virus, or by bacteria. Bacterial pneumonia can develop on its own or can develop after a severe cold or the flu. Pneumococcal disease kills more people in the United States than all other vaccine-preventable diseases combined.

Pneumonia can cause:

  • High fever
  • Cough, shortness of breath
  • Bacteremia (bacteria in the blood)
  • Meningitis (brain infection)

About the Pneumonia (or Pneumococcal) vaccine:

  • There are two types of pneumococcal vaccines available for adults: PPSV23 and aPCV13. 
  • Adults with ESRD need to receive both vaccines initially, and then need to be re-vaccinated in five years.
  • Getting a flu vaccine can help prevent pneumonia, but patients with ESRD need to receive BOTH the flu and pneumococcal vaccines.
  • You cannot get pneumonia from the pneumococcal vaccine.

Resources

COVID-19

New! The Network developed COVID-19 Vaccination Tracker can be used to track and monitor COVID-19 vaccinations that patients and staff receive outside of the facility. The tracker can also be modified to meet the specific needs of your dialysis facility.

Resources

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