Working with ChronicKidney Disease

Many people with chronic kidney disease(CKD) or kidney failure work full-time or part-time, go to school, or take care of their homesand families. Others do volunteer work, havehobbies or have regular exercise routines. Ifyou have CKD or kidney failure, you may havequestions about finding, keeping or changingjobs. This brochure was designed to answermany of your questions.

I was working before I got kidney dis-ease. Will I be able to go back to work?

Many people who start dialysis or have atransplant want to return to work quicklybecause work helps them feel that their liveshave gotten back to normal. Some people takea little time off to start dialysis, while otherstake a longer leave of absence to get used todialysis or to recover from surgery. You shouldtalk to your doctor about when you will beable to return to work.

I am not working now. Are thereresources to help me find a job?

Yes. There are many services available for jobseekers. Some of these services are privatecompanies, others are government agencies.They can help you decide what kind of jobyou would like and what you are qualified to

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do. They can also help you write a resumeand prepare for interviews. Remember that pri-vate companies will expect payment for theirservices. The following are some popular job-hunting resources:

■ Monster.com

■ Careerbuilder.com

■ Hotjobs.com

■ USAJOBS.com

■ the Help Wanted section of local newspapers

■ employment and temporary agencies

■ state client assistance programs

■ Job Corps

■ state or local employment agencies.

Your social worker can help you locate theseresources. Many National Kidney Foundationaffiliates have listings of local employmentagencies. Some government agencies mayeven help pay for training. Furthermore, if youfind work through a state or federal vocationalrehabilitation agency, your employer may be eligible to receive a tax credit for employing you.

If you are entering the job market for the firsttime you may find out that you need or wantsome more education. Most schools have guid-ance counselors and employment counselorswho can help you decide what your needs are,based on the career that you want to pursue.

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How can I prepare for job hunting?

Start by writing a résumé. This is a record of youreducation and your work history. It includes:

■ your name, address, email address andtelephone number(s)

■ a summary of your work experience (bothpaid and volunteer)

■ your educational history

■ any special skills you have that may helpyou qualify for a job

■ the names of two or three references—people you know who would recommendyou for a job

What should I expect at a job interview?

During a job interview, you will meet with anemployee of the company, often from the com-pany’s Human Resources department. They willtell you about the company and describe thejob, especially the job’s responsibilities. This isyour chance to talk to them about the skills youpossess that qualify you for the job. You shouldtalk about the things that you do well. Do notbe afraid to talk about skills you learned whiledoing volunteer work. Don’t be afraid to askquestions about the company and the positionthat you’re applying for. You will leave a posi-

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tive impression with potential employers if youshow them that you are interested in the compa-ny and want to learn about it.

Should I tell potential employersabout my illness and treatment?

If you do not think that your illness and treat-ment will interfere with your ability to do the jobthat you are applying for, you do not need tomention it during an interview. Many peoplewith CKD suggest that you only bring up yourillness when you receive a job offer.

What if I am working when I begin treatment?

People who are working when they are diag-nosed with CKD face a particular set of chal-lenges. Some people continue to work full-timewhen they begin treatment; others switch to apart-time or flexible schedule. Some people askfor less physically demanding jobs. You mayneed to work certain hours in order to go todialysis or you may need a clean, private areain which to do your peritoneal dialysisexchanges. You should feel free to talk to youremployer about changes to your job that mightmake it easier for you to work. Remember, youemployer probably won’t know what changesyou might need if you don’t ask for them.

Do not expect your employer to know muchabout kidney disease or how it may affect yourability to work. They might have concernsabout how much work you can do and howmuch time off you will need. They may also

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have concerns about how much your healthbenefits will cost the company. You may wantto ask your doctor or another member of yourhealth care team to speak with your employerabout some of these issues. A little informationabout your illness, abilities and limitations cando a lot to ease an employer’s concerns. Hereare a few of the topics you and your employermay want to discuss:

■ altering your work schedule to accommodate dialysis and doctor visits

■ making up time taken off for medical reasons

■ your physical limitations, if any

■ what to do in case of an emergency.

Employers may not know about tax credits theycan receive for making changes to the work-place. You may want to give your employer acopy of the National Kidney Foundation’sbrochure About Chronic Kidney Disease: AGuide for Patients and their Families. You canalso refer them to the National KidneyFoundation’s Web site: www.kidney.org

Are there laws to protect me againstjob discrimination?

The Civil Rights Act, the Rehabilitation Act, andthe Americans with Disabilities Act all protectyou from job discrimination. Examples of dis-crimination include being fired–or being turneddown for a job or a promotion–because of anillness or condition that does not affect yourability to do your job. The Department of Laborhandles complaints filed under theRehabilitation Act.

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If you work for a company with 15 or moreemployees, the Americans with Disabilities Act(ADA) requires your employer to make any“reasonable accommodations” that you mightneed in order to work. Examples include mak-ing parking lots, bathrooms and work areashandicapped accessible; having flexible workschedules; reassigning you to a less strenuousjob if you request one and one is available;and assigning any of your non-essential tasksto other employees, at your request. The EqualEmployment Opportunity Commission handlescomplaints under the ADA.

If you work at least 20 weeks of the year foran employer with 50 or more employees, youmay qualify for the Family and Medical LeaveAct (FMLA). The FMLA allows you to keep yourgroup health insurance, but you may have topay the full premium. Your employer can askfor medical certification stating that you have aserious illness, but cannot punish you for takingleave to have surgery or begin treatment andyou cannot be forced to return to light dutybefore your leave is over. In most cases youremployer must provide you with identicalresponsibilities to those you had prior to yourleave. Your spouse, children, or parents mayalso be eligible for FMLA leave if you needthem to provide you with care or transporta-tion. The Department of Labor handles com-plaints under the FMLA.

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Where can I get help if I believe Ihave been discriminated againstbecause of my kidney disease?

If you feel that you have a grievance with youremployer, the Equal Employment OpportunityCommission (EEOC) suggests that you first pur-sue it through the company’s established chan-nels. Union members should take their com-plaints to their locals. Most towns and citieshave departments that help people who haveencountered discrimination in the workplace.The name of the department will vary depend-ing on where you live. It may be called theDepartment of Human Services, theDepartment of Health and Human Services, the Office for People with Disabilities, or some-thing similar.

On the state or federal level you can contactthe Human Rights Commission, the Departmentof Labor or the EEOC. You can find the phonenumbers for these agencies in the telephonebook’s blue pages. Your social worker or yourNational Kidney Foundation affiliate may alsobe able to help you.

Will I have to take a physical exam?

The ADA states that your employer may not askyou to take a physical exam until after a joboffer has been made and only if all the appli-cants for that job are required to take a physi-cal exam. If the job offer is rescinded after youhave taken the exam, the company must showthat you cannot perform the essential functionsof the job. It should be noted, however, thatyou can be asked to take a drug test.

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Am I entitled to company healthinsurance?

If the company offers health insurance to all ofits employees who work the same number ofhours that you work, than you must be offeredthe same coverage. Read the policy carefullyto see if it covers treatment for kidney disease.If the policy requires a waiting period foremployees with existing health conditions, therecould be a delay in your coverage. However,if you had health insurance less than 63 daysprior to receiving new coverage, you mayhave met all or part of the waiting period. Askyour old health plan to provide you with aCertificate of Credible Coverage that you cangive to your new health plan’s administrator.Your state’s insurance commissioner’s office cantell you more about the laws that apply togroup health insurance companies.

What kinds of disability benefits canI receive if I can’t work?

Unless you have some other source of income,you will probably need financial help if you can’twork. Your social worker can give you informa-tion about what programs are available, whatthe qualifications are and how to apply for them.The Federal government runs two of the best-known programs. The Social Security DisabilityInsurance (SSDI) is a program operated by the

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Social Security Administration. It pays a month-ly cash benefit to people who are unable towork for a year or more because of a disabili-ty. The amount you receive is determined bythe length of time you worked prior to your dis-ability and the amount of tax deducted fromyour earnings during that time. Your family’scurrent income level does not affect the amountthat you are paid. There is a 3-5 month reviewperiod for applications; however, if youstopped working before you applied, you mayqualify for back benefits. You can apply forSSDI online at: www.socialsecurity.gov/applyfordisability/

Supplemental Security Income (SSI) is also paidby the Social Security Administration. Benefitsare calculated based on the recipient’s financialneeds, not the amount of tax that they’ve paid.SSI pays its benefits out on a monthly basis andmay be supplemented by state or local benefits.You must file an application with Social Securityin order to be considered. At this time applica-tions for SSI cannot be filed online.

Are there any government programsthat help people with kidney diseasefind work?

Social Security has many programs designedto help you find work. If you receive eitherSSDI or SSI, ask your social worker or SocialSecurity representative for information aboutwork incentive programs that will allow you toease back into work. One of the things theywill tell you about is the Ticket to Work andSelf-Sufficiency program. Under this programSocial Security provides you with a ticket that

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you can bring to a state or federal employmentagency, where it can be used to obtain addi-tional education, job training, or job placementservices. This is what the voucher looks like:

More information about the Ticket To Work program can be found at: www.yourtickettowork.com/ttw_ticket

You may qualify to receive services from yourstate’s vocational rehabilitation (VR) agency.They will evaluate your work history, skills andinterests and help you decide what type ofassistance you need. Your counselor can helpyou get additional education or job trainingand can help you find or keep a job. Theprocess of applying for and receiving benefitscan take several months, so be patient but per-sistent. Counselors have heavy workloads, butthey want to help motivated clients.

The Department of Veterans Affairs (VA) offersvocational rehabilitation services to qualifiedveterans. Information can be found at yourstate’s VA office or at:www.vba.va.gov/bln/vre/emp_resources.htm

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Community service agencies, including someNational Kidney Foundation affiliates, providejob training programs. Talk to your social work-er or your local National Kidney Foundationaffiliate about whether these programs areavailable in your area.

Why look for work if I can get disability benefits?

Getting a job can be a rewarding experience.Not only does it allow you to earn the moneyyou need to pay your bills and to do the thingsyou enjoy, it can help you get health insuranceas well. Holding down a job helps many peo-ple feel better about themselves. It can help youfeel more productive and allows you to get outand socialize. Volunteering may be another wayto feel good about yourself while gaining skillsthat could help you get a paid job in the future.

Am I ready to work?

Obviously your health has got to be your toppriority. Before you think about finding orreturning to a job, you have to assess whetheryou are physically and mentally ready to work.The process of preparing yourself to beginworking again is often referred to as rehabilita-tion. For people with CKD, rehabilitationinvolves:

■ returning to a healthier physical state

■ maintaining a positive outlook

■ enjoying relationships with family and friends

■ feeling productive.

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How can I build my strength andendurance?

With help from your family, friends and healthcare team, you can learn how to improve yourphysical condition. This will allow you to takepart in the activities you enjoy and completethe tasks that you set for yourself. Remember toalways follow your doctor’s advice for treat-ment, diet and medications.

Most people with kidney failure have ane-mia—a low blood count—which leads to mus-cle weakness and fatigue. A medication callederythropoietin (EPO) is used to treat anemia.Ask your doctor if you are a candidate for EPOtreatment (see the National Kidney Foundationbrochure What You Need to Know AboutAnemia and Chronic Kidney Disease)

Stay active. Whether you’re doing chores,exercising, or enjoying your hobbies, keepingyour body in motion can increase your energylevel and helps keep your muscles in bettercondition. Talk to your doctor about establish-ing an exercise program that is right for you(see the National Kidney Foundation brochureStaying Fit with Kidney Disease).

Speak with your dietitian about what foods youcan eat to help keep your muscles healthy.(See National Kidney Foundation brochuresNutrition and Hemodialysis, Nutrition andPeritoneal Dialysis and Nutrition andTransplantation.)

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What else can I do to cope withmy illness?

Right now the changes in your health maymake it hard for you to think about the future.You may feel angry, sad or even guilty. Theseare normal feelings and are part of the adjust-ment process, but remember that negativethoughts can drain you of your energy andmake it hard for you to enjoy life. Many peo-ple find that staying busy keeps them fromfocusing too much on negative thoughts.Negative thoughts can lead to depression ifthey last longer than a couple of weeks. Talkwith your social worker or your doctor abouthow to get help if you’re feeling depressed.Depression can be treated with counseling andmedication. Be aware that you have choices.Many people say they began to feel betterand more in control of their lives as theylearned more about kidney disease and howto take care of themselves.

Your local National Kidney Foundation affiliatecan also provide information. Check the whitepages of your telephone directory or call800.622.9010 for the number of the NKFaffiliate nearest you. (See the National KidneyFoundation brochure Coping Effectively: AGuide for Patients and Their Families.) You canalso visit the NKF’s Web site, www.kidney.org for more information.

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What else should I know?

You might need help in order to return to a full,productive life after kidney failure. Your family,friends, employers and health care staff canhelp you, but the most important person in therehabilitation plan is YOU, the person with kid-ney disease. It will take hard work and deter-mination for you to cope with the changescaused by your illness, but the results can beworth the effort. If you take charge of yourrehabilitation, and ask others for help whenyou need it, you should be able to meet manyof your rehabilitation goals.

Other ResourcesSocial Security’s work site is: www.socialsecurity.gov/work

You can download a copy of the Life Optionsemployment book at: www.lifeoptions.org/catalog/pdfs/booklets/employment.pdf

You might also be interested in these other pub-lications from the National Kidney Foundation:

Coping Effectively: A Guide for Patients andTheir Families

Sexuality and Chronic Kidney Disease

Staying Fit With Kidney Disease

To obtain copies of these publications, or infor-mation about other National KidneyFoundation resources, contact your localNational Kidney Foundation affiliate, or callthe national toll-free number 800.622.9010.

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© 1989 – 2006 National Kidney Foundation, Inc. All Rights Reserved.

Education Along the Continuum of Care

More than 20 million Americans—one in nine adults—have chronic kidney disease,and most don’t even know it. More than 20 million others are at increased risk. TheNational Kidney Foundation, a major voluntary health organization, seeks to pre-vent kidney and urinary tract diseases, improve the health and well-being of indi-viduals and families affected by these diseases, and increase the availability of allorgans for transplantation. Through its 47 affiliates nationwide, the foundation con-ducts programs in research, professional education, patient and community servic-es, public education and organ donation. The work of the National KidneyFoundation is funded by public donations.

National Kidney Foundation30 East 33rd StreetNew York, NY 10016800.622.9010

www.kidney.org

This arrow illustrates the potential scope of content for KLS resources.Lightshaded boxes indicate the scope of content targeted in this resource.

GFR = Glomerular Filtration Rate; T = Kidney Transplant; D = Dialysis

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