If you are in the process of transitioning to dialysis, and need or want to work you might be concerned about how you can work and maintain your dialysis treatments. This article will give you some tips to help you get started.
Speak with your Nephrologist and Social Worker
There are several different dialysis options (also called modalities) available, each with their pros and cons that your nephrologist will review with you. When you are learning about these options it can be a lot to take in. If work is a priority concern for you, make sure you share what your work schedule is today or what you want it to be with your nephrologist, social worker and any other members of your nephrology care team. They each have worked with many people in similar situations and they can share information that can help you as you decide what dialysis option will work best for you.
Remember you can always change between the different dialysis modalities as your needs change. If you feel your current dialysis modality isn’t working for you with your schedule and preferred lifestyle discuss this with your nephrologist to see what other options are available for you.
Who to speak to about scheduling dialysis around your work schedule
For In-center dialysis. Speak with your dialysis coordinator and social worker about your work schedule and select days and times for dialysis that allows you to get to work rested.
If your dialysis center doesn’t have the schedule you absolutely need, and your work schedule is not flexible, you can look for other dialysis centers near you that might have a better availability.
Remember when going for in-center dialysis - delays will happen so it might be best to schedule dialysis for after work hours, as you will most likely want to rest after dialysis, or include extra time in your schedule for travel and in-center delays plus rest time before you start working.
For Home dialysis. If you have a care partner helping you, create a schedule that allows you both to work and also gives you each time to do something fun or relaxing. A benefit of home dialysis is that it allows you to make your own dialysis schedule.
Get your employer involved
While you have no obligation to disclose your personal health information with your employer, sharing that you are on dialysis may be helpful as you navigate multiple schedules. Unless your employer has personal experience with or has known someone on dialysis, your manager may not understand what is involved with dialysis and the time commitment required. Clearly communicating with your employer can be helpful for them to understand the importance of your time off request for a dialysis related appointment.
If you receive any pushback from your employer, remember that you have rights that can help you (we will discuss these in the next section).
Become Familiar With Your Rights
As mentioned above, knowing your rights when it comes to working and going to school is important. The U.S. Congress passed the Social Security Amendments of 1972 which guarantees Medicare coverage for most people with kidney failure, even those under age 65, stating that chronic kidney disease constitutes a disability for the purposes of Medicare. Under laws such as the American Disabilities Act (ADA) and the Family Medical Leave Act (FMLA), people on dialysis and those with other disabilities legally deserve and are entitled to receive appropriate accommodations to be able to continue working. For example employers with 15 or more employees are legally obligated to provide time off of work without any interruption in the employee’s job or health benefit status. Read “A Guide to Disability Rights Laws” to learn more and find answers to your specific questions.
Know What Resources Are Available
In addition to rights that protect people with disabilities, there are also programs available to help people on dialysis and those with other disabilities remain employed or to help offset the financial burden they may experience due to their disability.
The Vocational Rehabilitation program. This program is available to those who are looking for new employment and may need a specific schedule or arrangements at work to allow them to physically perform the job (Blackmon, 2017). You can find your state’s Vocational Rehabilitation program by searching Vocational Rehabilitation programs online or speaking with the social worker in your clinic to get more information.
Ticket to Work & Social Security Work Incentive programs, are available to people on dialysis to help them obtain financial independence. Both programs aim to help people continue to work while receiving benefits through social security insurance or social security disability insurance. However, there are some limitations on the amount of income that one can earn while working, so it is important to ensure that you update your income information periodically to ensure that you do not lose these benefits or end up having to repay any amount of the benefits that you received in error. If you have questions, ask your social worker to help you in signing up for these programs.
Take Care of Your Health
An essential part of remaining productive and continuing to work, volunteer, or go to school after you’ve started dialysis is ensuring that you take care of yourself. It is essential that you get a good night’s sleep, eat well, stay engaged doing activities you enjoy, include exercise in your day when you can and find time to rest when you need it.
Importantly, don’t miss your dialysis sessions this can leave you in less than optimal health, and potential lead to other health issues (Blackmon, 2017).
Lean On Your Support System
Whether you are working, volunteering, or going to school while on dialysis, remember that you have a support system that you can rely on. Your support system includes not only your family and friends, but also your dialysis team. Whether you need encouragement to keep going or are looking for inspiration there are many people who can help you when you need it. Family and friends for example can be your cheerleaders, and the dialysis team can give you practical advice. Remember your nephrologist, dialysis nurses and social worker are helping many people in similar situations and can offer suggestions to help you create the life you want. Make sure you rely on your support team and ask for help when you need it.
In summary, relying on your dialysis team, specifically the nephrologist and social worker, and gaining help from your employer, friends, and family can be a pivotal move in helping you successfully manage your dialysis and work.
Resources
Returning to Work While on Dialysis. National Kidney Foundation.
Family and Medical Leave Act. Wage and Hour Division.
Employment among Patients on Dialysis. Clinical Journal of the American Society of Nephrology. Hallab, A., & Wish, J. (2018).
Health Information Privacy Law and Policy. Healthit.gov.
Introduction to the ADA. Ada.gov.
The Red Book. Social Security.
The Work Site. Ticket to Work.
Working while on dialysis. Satellite Healthcare.
