Frequently Asked Questions

Yes, this is normal. You are normal. The emotions that you are experiencing are a natural reaction to the changes in your life and the stress you are experiencing. Many people facing these challenges can turn inward and isolate themselves from others to cope with stress. This isolation, coupled with bottled up emotions, can lead to depression.

Research has shown that depression is the most common emotion felt by people receiving dialysis, and it can be a sign that you have started to accept the reality of your disease. Sadness, anger, loss of appetite, trouble sleeping, and even a lack of interest in sex or daily living can be signs that you’re depressed.

You do not have to live with depression. Work with your doctor and healthcare team to get the help you need.

First and foremost, know that you are not alone. Next, remember to take care of yourself by getting help. Many people are quick to treat physical conditions, but when it comes to their mental and emotional health, they take their time. Remember that your mental and emotional health directly impacts your physical health!

Talk to your family and friends. Don’t keep your emotions bottled up. Let those who love you understand what is happening to you. They may need to understand your feelings better to learn how to best support you.

If you don’t have people close to you that you would like to talk to, remember there are other people just like you are experiencing the same things. You can join a support group to help you connect with others who can share their experience and helpful coping strategies. Find a support group in your area by contacting the National Kidney Foundation.

Also, remember to talk to your doctor about your feelings. There are treatments for depression and anxiety. You do not have to suffer through these symptoms.

Listed below are a few things to keep in mind when you are coping with the stress of kidney disease:

• Stay positive! You can do this by appreciating those who offer support, finding the good in situations even when there doesn’t seem to be any.
• Have goals and live with purpose. For example, you can do this by setting a goal for exercises you will do, volunteering to help others, or being a spokesperson willing to educate others about kidney disease.
• Get as much education as you can about kidney disease. The more you know, the more empowered you will become.
• Ask questions! You can only follow medical advice if you understand, so ask!
• Follow your doctor’s advice. You will need to eat a balanced diet, exercise, and take any prescribed medications.
• Share your feelings with your friends and family. This will help your family and friends better understand you and what they can do to help.
• Join a support group for people with kidney disease. Sometimes, it's helpful to be among people experiencing the same things you are. The Renal Support Network is another not-for-profit organization that seeks to empower people living with kidney disease, give them hope, and provide connections to others who share your experience. The National Kidney Foundation also has resources to support you.
• Continue to do the things you have always enjoyed doing. Don’t give up your passion. Find a way to work through the changes. Remember, you manage your kidney disease; it should not manage you.

Kidney disease may affect individuals differently depending on the cause of the kidney disease and the stage of your kidney disease. You may not experience all of the symptoms on this list, but you may experience any combination of these symptoms as you reach end stage kidney disease:

• Frequent thirst
• Passing very small amounts of urine
• Swelling in the hands, feet and face
• Puffiness around the eyes
• Unpleasant taste in the mouth and urine-like odor to the breath
• Feeling tired
• Trouble breathing or short of breath
• Loss of appetite
• High blood pressure
• Pale skin
• Dry, itchy skin
• Nausea and vomiting
• Headache
• Drowsiness or confusion
• Darker color to skin
• Muscle cramps
• Trouble Sleeping
• Inability to concentrate

Additionally, if you already on dialysis and struggling to meet the diet and fluid restrictions necessary, or you skip scheduled dialysis treatments, you could experience many of the above symptoms.

You will also experience physical changes related to the access required for your dialysis modality of choice. If you have chosen hemodialysis, an AV fistula or graft are the best options for vascular access. Following the surgical procedure to place the access, usually in one of your arms, you may have visible scar tissue and marks, but these are usually minimal. When you are evaluated by the vascular access surgeon, you will have vein mapping to determine the best location for your access. You will notice changes occurring naturally as the access matures. With a fistula, the vein wall thickens and increases in diameter. It may look like you have “bulging veins” at the access site. With a graft, the artificial tube will be noticeable under the skin. If you wear short-sleeved shirts, it will be noticeable on your arm. If you have a temporary catheter inserted in the neck or chest area, you will have a small scar from the incision and there will two tubes sticking out of your neck or chest. With a catheter, you will not be able to shower or swim and will have a dressing over the site that should remain intact at all times.

If you have chosen peritoneal dialysis, you will have a soft, flexible tube inserted into your lower abdomen. It is about the size of a straw and there are usually a few inches of tubing left outside of the body, though it usually isn’t noticeable under your clothing. The site typically takes a couple of weeks to heal. Once healed, it is very important that you keep the site clean, and your home dialysis nurse will teach you how to do this. You may also need to keep the catheter secured with tape to minimize the chance of movement or trauma to the insertion site.

If you have concerns about these or any other physical changes that you experience, please discuss them with your doctor and care team.

Yes. You should be able to travel, and it is encouraged! With a bit of extra preparation, travel is possible.

The amount of time you need depends on several factors. It takes about six weeks to prepare for travel within the U.S. and about 12 weeks to plan for international travel.

If you are currently receiving in-center hemodialysis, and you plan to travel during the holidays, a clinic near your destination may already have visitor stations reserved for the holidays. If you are on home dialysis, it may take longer to deliver your supplies during the holidays, so advance planning is necessary as it could take as much as 30 days to get your PD supplies delivered to a new location.

Dialysis clinics are located all over the world. Even if a clinic is outside of the town you are traveling to, there is a chance a clinic is nearby.

A good way to find out if there is a DCI dialysis facility is to use our clinic locator tool.  If there is not a DCI clinic in the area you are traveling, please visit Medicare.gov for additional locations to receive care. This site will also allow you to view and compare the details of the facilities, including treatment modalities offered, the number of stations, and if the clinic offers hemodialysis shifts starting after 5 p.m.

If traveling internationally, log on to www.globaldialysis.com for a comprehensive list of units worldwide. You may want to check with a travel agent for special travel programs that accommodate dialysis.

You have options for getting your supplies to your destination. If you’re going for one or two days, pack your supplies and enjoy yourself. Tell your PD nurse your plans if you’re going for a longer time or flying. Ask for the names of nearby units to call if you have a problem.

Your home dialysis nurse will help you determine what supplies you will need for your length of stay. You would then tell your distributor of PD supplies where to ship the necessary items at least 30 days before a trip that will last longer than a few days. The supplier will ship anywhere in the United States, including Alaska and Hawaii. Two days before you go, call to confirm your supplies have arrived. If you plan to fly with your cycler, pack it in its case.

Call the airline in advance to ensure they will “gate check” the cycler as a critical medical supply. This means that you carry it to the gate, and the cycler will be checked in there. It will then be waiting for you at the arrival gate.

If you will be traveling internationally, please talk with your home dialysis team about your options related to cycler and supplies.

If Medicare is your primary healthcare coverage, it will pay for 80 percent of your treatment cost anywhere in the U.S. or U.S. territories. Medicare does not cover treatments on cruise ships – even U.S. cruises – or at facilities outside the United States.

Some dialysis facilities require patients to pay any copays or deductible amounts prior to or at the time of treatment. If you have secondary coverage, ask your insurance company about co-payment reimbursement.
Commercial health insurers' payment policies vary. Many require that you get prior authorization before receiving treatment in a different clinic, so check with them before making travel plans.

Medicaid (state medical assistance) programs will pay for treatments if you travel within your state, but generally not if you travel out of state. Reach out to your state Medicaid agency to ensure that you have accurate information about what is or is not covered.

Please be sure to check your healthcare coverage before traveling, as information changes periodically.

As you draw closer to end stage kidney disease and the need for dialysis, you may experience symptoms such as fatigue, swelling, and high blood pressure. You should follow your doctor’s advice regarding proper diet, exercise, and medications to combat these symptoms. However, even with precautions and “doing the right things,” you will feel your body changing in response to its kidney disease.

These changes may have you questioning your ability and desire to be employed. Before you make employment decisions, there are several factors to consider.

Though you may feel tired and think it would be best to quit work, it may not be in your best interest. If you are currently employed, you should do what you can to keep your job. While this may not sound appealing right now, giving up your job can make it much harder for you to go back to work later when you will probably be feeling better.

Also, consider that having a steady income and health insurance is helpful for you. Private insurance will reduce your out-of-pocket cost for treatments. Many times, when people quit work, they end up feeling unproductive and battling depression. Working gives many people a sense of purpose.

As you draw closer to end stage kidney disease and the need for dialysis, you may experience symptoms such as fatigue, swelling, and high blood pressure. You should follow your doctor’s advice regarding proper diet, exercise, and medications to combat these symptoms. However, even with precautions and “doing the right things,” you will feel your body changing in response to its kidney disease.

These changes may have you questioning your ability and desire to be employed. Before you make employment decisions, there are several factors to consider.

Though you may feel tired and think it would be best to quit work, it may not be in your best interest. If you are currently employed, you should do what you can to keep your job. While this may not sound appealing right now, giving up your job can make it much harder for you to go back to work later when you will probably be feeling better.

Also, consider that having a steady income and health insurance is helpful for you. Private insurance will reduce your out-of-pocket cost for treatments. Many times, when people quit work, they end up feeling unproductive and battling depression. Working gives many people a sense of purpose.

Keeping your current job really depends on the type of job you do. You may be surprised that adjustments can be made to accommodate your condition.

Your doctor may also have advice on what type of job functions you should limit or avoid. Ask them to provide you with information describing kidney disease so that you can share it with your employer. Then, work with your employer to focus on what you can do.

If you can’t perform your current job, your employer may be able to help you find a different job that better accommodates your needs. If you need to switch employers, work with a vocational rehabilitation (VR) counselor to help you find employment that works with your lifestyle.

The Rehabilitation Services Administration (RSA) in Washington, D.C., oversees all state VR agencies funded by federal and state tax dollars. If you apply for Social Security disability, Social Security may refer you to your state’s VR agency. Otherwise, the best way to find a vocational rehabilitation counselor is online through the Social Security Administration.

Yes. Because people with health problems can face challenges in finding and keeping jobs, these laws were designed to protect them:

• Americans with Disabilities Act, Titles I and V: Employers who have 15 or more employees must make minor changes, called “accommodations,” to help people with disabilities work. Employers do not have to make changes that cost too much or that change job functions. Examples of “reasonable” things people with kidney disease may need include a clean room to do a PD exchange, flexible work hours to keep doctors’ appointments or go to dialysis, a chair to sit in or tools so you can do the job, and/or extra rest breaks, among others.
• Age Discrimination in Employment Act of 1967: This law applies to companies with 20 or more workers. If you are 40 or older, the ADEA protects you from work discrimination. Age is rarely a proven qualification for work.
• Rehabilitation Act, Sections 501 and 504: If your health limits at least one major life activity and you work for or want to work for the federal government, this Act protects you. Section 504 of the Rehabilitation Act states that “no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under” any program or activity that either receives Federal financial assistance or is conducted by any Executive agency or the United States Postal Service.

The amount of time you will need to spend in a doctor’s office will vary along with the progression of your kidney disease and your treatment plan. Remember that you may be able to minimize missed work time by scheduling your doctor’s visits on your days off or by working with your supervisor to rearrange your schedule to accommodate for doctor’s visits throughout the day. If you are on dialysis, the doctor will see you in the dialysis clinic so there won’t be an extra appointment required.

There are ways to plan your time off for doctor’s appointments to use your employer’s benefit offerings, such as sick time, personal time off, or vacation time. There are also other options, such as short- and long-term disability, that you may want to discuss with your human resources department at work.

You may also be eligible for benefits related to the Family Medical Leave Act (FMLA). This act allows some workers to take up to 12 weeks of unpaid leave per year if they or a family member have a serious health problem. To qualify for FMLA leave, you or your family member must meet all the following:

• You work for a government agency, school, or company with 50 employees working within 75 miles.
• You have worked for the company for at least 12 months.
• You worked at least 1,250 hours in the last year (about 25 hours/week).

When possible, ask for FMLA leave at least 30 days ahead or as soon as you know you’ll need it. Your employer can ask you to get your doctor to certify that you need leave. You can take all 12 weeks of FMLA leave at once or take time on certain days until you use up your FMLA leave. Your employer can ask you to use vacation time and sick days as part of your FMLA leave.

While on leave, your employer must hold your job or a similar one with the same pay, benefits and working conditions. Your employer also must keep you on the group health plan, but you may have to pay the premium. Find out more about your protections under FMLA here.