Living with Dialysis
Living with chronic kidney failure means many changes in your life. Sometimes this can feel overwhelming. That’s why every Fresenius clinic has a specially trained social worker on staff. They will help you and your family adjust to life with chronic illness and its treatment.
What do Renal Social Workers do?
Renal social workers are specialists. They help people with kidney disease and their families. They can help you cope with the changes in your life. Your social worker consults with doctors, nurses, dietitians and administrators. He or she can help you problem solve. Your social worker can also guide you to resources that will help you and your family.
Long-term disease puts a lot of stress on you and your family. Your social worker can help. He or she will give you and your family emotional support. All our social workers are qualified to do counseling.
How you handle the changes in your life affects your treatment. Your feelings about kidney disease and dialysis also make a difference in treatment. Meeting with a social worker is an important way to take care of yourself.
How can my social worker help me?
Our social workers give more than support. They also help you with practical concerns such as:
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Adjusting to dialysis
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Insurance and Medicare forms
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Applying for financial aid
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Financial problems
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Employment or job changes
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Transportation to and from dialysis
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Travel arrangements
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Insurance claims and medical bills
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Home care needs
Some of the issues you and your family face are more personal. Your social worker can provide counseling on a personal, family or group basis. Some of the most common issues that come up include:
How is my privacy protected?
Anything you say to your social worker is private. However, any time you talk in a public place, there is a chance that someone might overhear what you say. Some people talk with their social workers while they are on a dialysis machine. When they do, privacy isn’t always possible.
If you are worried about keeping a problem private, you may want to make an appointment. Then you can discuss it with your social worker in his or her office.
Is my information ever shared?
Your social worker is part of your health care team. He or she may need to share your information with other team members in order to give you care. It may be shared in written records or during conferences. When the rest of your team knows the unique needs of you and your family, they can give you better care. Your social worker will only share information if it is needed for your care. Like your social worker, the rest of your care team will keep your information private.
There are government programs and local agencies that help people with chronic diseases. You may qualify for their services. Your social worker can help you find what resources are available to you and your family. He or she can also guide you through any applications to help you make use of those resources.
What other resources are there?
Fresenius clinics have written resources to help you. One of these is our newsletter, PatientLine. We print it several times a year. It focuses on topics that help people having dialysis. We also have a pamphlet that explains dialyzer reuse.
Another helpful resource is a booklet about travelling when you need dialysis. It answers the questions people ask most often. You can get it from the Patient Travel Service or your social worker.
There are many local organizations across the country. They serve people with chronic renal failure in a town or region. Talk with your social worker. He or she can tell you what groups meet in your area.
There are also national organizations. They offer information and services for you and your family. Some of these are:
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The American Association of Kidney Patients (AAKP)
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The American Kidney Fund (AKF)
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The ESRD Networks
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The Medic Alert Foundation
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The National Kidney Foundation (NKF)
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The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
What is the American Association of Kidney Patients (AAKP)?
AAKP is a patient organization. It has chapters across the country. They sponsor support groups and advocate for patients. AAKP has education services for people with kidney disease. It also educates the public about kidney disease.
AAKP publishes a magazine called RENALIFE. It comes out four times a year. It features personal experiences from people with kidney disease. It also shares news of interest to people with kidney disease and their families.
What is the American Kidney Fund (AKF)?
AKF is a nonprofit organization. It helps people who need kidney dialysis or transplants. AKF offers financial help to those who need it. It works with kidney donor development and research programs. AKF also has community services. It has pamphlets on many subjects related to kidney disease. They are available for free in English and Spanish.
What are the ESRD Networks?
The federal government created the ESRD Networks in 1977. They were set up to serve as a link between the government and the local community. The U.S. is split into 18 regions. Each region has its own Network. For example, region 11 has the Renal Network of the Upper Midwest. It serves Minnesota, Wisconsin, Michigan, and the Dakotas.
The Networks oversee the benefits given to kidney patients. They review dialysis and transplant facilities. They also collect data. The Networks are a source of information about kidney disease and treatment.
What is the Medic Alert Foundation?
The Medic Alert Foundation offers many kinds of ID. These include necklaces, bracelets and dog tags. How much they cost depends on the style. Many of them are very low cost. Each ID has the Medic Alert emblem on the front. The wearer’s medical problem and ID number are on the back.
In an emergency, doctors, nurses or EMTs treating you can call a Medic Alert number. They give the operator your ID number. Medic Alert tells them what they need to know about your medical history. This helps make sure you get the care you need. They also give the name and contact information for your emergency contact. The Medic Alert emblem is recognized around the world.
What is the National Kidney Foundation (NKF)?
NKF is a nonprofit organization. It has over 50 partner groups and local chapters across the country. It works to improve the care of people who have kidney disease. NKF provides education for doctors. It supports research. NKF also works to prevent kidney disease. It offers patient and community services. Many of its publications are available to the public.
What is the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)?
NKUDIC is an information resource. It serves people with kidney disease. It also serves health professionals. It is run by the National Institute of Diabetes and Digestive and Kidney Diseases, which is part of the National Institutes of Health.
NKUDIC collects and manages information. Then they distribute it to people who need it. Their focus is on pamphlets, fact sheets and articles for patients. These cover many topics. They also have mini-bibliographies. Many of these are free of charge.
How can I find out more?
Many local groups help people with kidney disease. Your social worker can help you find the ones in your area. He or she will also help you contact local branches of national groups.
You can contact many of the national organizations directly.