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Kidney Disease Support and Guidelines
Coping Effectively: A Guide for Patients and their Families
Although many medical advances have been made in the treatment of kidney and urinary tract disease, the emotional effects of kidney failure on patients and their families remain great because many areas of everyday living have to be changed.
Receiving treatment for kidney failure
What treatments are available for kidney failure?
Three major types of treatment are available for patients with kidney failure. They are hemodialysis, peritoneal dialysis and kidney transplantation.
Hemodialysis may be done at a dialysis center or at home, and treatments usually take place three times a week.
Peritioneal Dialysis may be done at home, at work, at school or wherever a clean, private space is available for bag exchanges. The two types of peritoneal dialysis are continuous cycling peritoneal dialysis (CCPD), which requires the use of a machine, and continuous ambulatory peritoneal dialysis (CAPD), which is machine-free.
Kidney Transplants can come from living donors, who are usually family members, spouses or friends of the patient. Transplants can also come from people who died recently (non-living donors).
You also have the right to choose not to start treatment if you feel the burdens of dialysis would outweigh the benefits for you.
It is important to remember that treatment does not cure kidney failure and that each type of treatment has its pros and cons. You and your family should explore each choice carefully with your doctor, transplant surgeon and other health care team members.
Taking a look at your lifestyle can help you decide which treatment is best for you. A treatment choice is not always final. For example, a patient who has decided thathemodialysis is the best choice may, at a later time, still consider peritoneal dialysis or a kidney transplant after talking to the doctor and other members of the health care team.
If you decide - with the help of your family and doctors - that a transplant is the best choice for you, you should be aware that a period of waiting will be necessary if the kidney is to come from a non-living donor. (See below*)
Occasionally, some patients choose to stop treatments once they have begun them. Patients who choose to stop dialysis do so knowing that without treatment, they will die.
Is it normal to have fears about beginning treatment?
Yes, almost all patients and their families have fears before starting treatment. Having concerns about how you will feel, whether the treatment will hurt, what the staff and other patients will think of you, and how long you can live with the disease is normal and expected.
The following steps can be helpful in dealing with these feelings:
Ask the doctor for a referral to the dialysis unit where treatment will take place. Visiting the facility before you begin treatment can help make the dialysis machine and the treatment less frightening.
If you are interested in a transplant, ask your doctor for a referral to a transplant center. Set up an appointment to visit with the staff.
Make a list of questions to ask.
Speak to other patients and families who have been through the same experience.
Discuss all your concerns with the health care team at the facility.
Call your local National Kidney Foundation affiliate for information and a list of the programs and services available.
Why is it important for me to get the right amount of treatment?
Dialysis treatment removes excess wastes and fluid from your blood. When you have enough treatment, your overall health will be better and you will have more energy to cope with the changes in your life. If you don't get the right amount of dialysis, these excess wastes and fluid are left in your blood, which can make you feel ill. In addition, studies have shown that receiving adequate dialysis treatment can help you live longer. Your dialysis center will test your blood to make sure enough wastes are removed. The main test used to measure your dialysis dose is called Kt/V (pronounced 'kay tee over vee'). Another test used by some centers is called urea reduction ration (URR). For hemodialysis patients, Kt/V should be at least 1.2 and URR should be at least 65 percent. For CAPD patients, weekly Kt/V should be at least 2.0 and for CCPD patients, weekly Kt/V should be at least 2.1.
Ask your dialysis care team what your numbers are. If your numbers are too low, ask what can be done to improve them. This information is based on the National Kidney Foundation's Kidney Disease Outcomes Quality Initiative (K/DOQI), a program developed to improve patient outcomes.
What are my responsibilities?
Understanding and taking charge of responsibilities are the first steps in adjusting to the treatment. Every patient should:
Take part in decisions about type of treatment.
Apply for funding to cover the medical expenses of treatment.
Arrange transportation to the treatment center by car, bus, taxi, etc. The social worker at the dialysis center may be able to help by suggesting transportation sources for ambulatory patients and patients requiring wheel-chair transportation.
Know and take medication as prescribed; inform the health care staff about any problems taking medicines or lack of funds to get them.
Arrive on time for scheduled dialysis treatments.
Follow the prescribed diet and fluid restrictions and tell the health care staff about any problems in following the diet.
Make necessary arrangements for dialysis well in advance when traveling.
Learning that dialysis or a transplant will be needed can be overwhelming at first, but normal activities can be resumed slowly. Understanding your own needs and taking charge of health-related responsibilities can help you to feel more in control of your life. This is important in offsetting feelings of helplessness. Don't be afraid to seek assistance from family or friends; they want to help.
How can I cope with the stress of waiting for a transplant?
In deciding to pursue transplantation, you have just made one of the most important decisions of your life. What happens next is one of the more difficult parts of a transplant - waiting for a suitable-matched donated kidney to become available. If you are fortunate enough to be receiving a transplant from a living donor, your wait will be relatively short. Those awaiting a cadaver donor have a longer wait, sometimes up to three years or longer, and there is no way of telling when a suitable donor will become available. During this waiting period, some people become fearful of the unknown. Here are some suggestions for turning this wait into a positive experience:
Discuss your concerns openly with your dialysis caregivers — doctors, social workers, nurses and dietitians.
Use the time to become informed about transplants by reading about the procedure and your care after the transplant.
Ask to talk with people who have had kidney transplants — both successful and unsuccessful.
If you are unable to work at your former job, ask your social worker about job retraining.
If you did not complete high school, ask about help in obtaining your degree.
Consider volunteering your time to worthwhile causes, such as programs to increase organ donation.
Be sure to get regular exercise within your limitations.
Your main goals during the wait for a new kidney are to increase your knowledge about transplants and to maintain your physical health and activities.
To make sure that everything goes smoothly when the time comes for you to have the transplant, you should:
Make sure the transplant center has your correct phone number and all other contact information and that all specimens needed for screening are sent to the tissue typing lab on time.
Make necessary family arrangements for being away from home for a time when you have the transplant.
Be prepared to get to the hospital in a timely fashion at any time of day or night when a suitable donor kidney becomes available.
How can I pay for my treatments?
Many of the costs associated with hemodialysis, peritoneal dialysis, and kidney transplant are covered by:
Private health insurance
TRICARE, formerly called CHAMPUS (if you are active in or retired from military service)
State medical assistance
State kidney patients (where available).
The financial counselor or social worker at your dialysis or transplant center can explain insurance coverage to you in more detail. You may also get additional information from the following sources:
For information about Medicare eligibility and coverage, contact Social Security at 800 772-1213 or your local Social Security office to receive a handbook explaining Medicare coverage for dialysis and transplant services.
For more information about TRICARE and veteran's benefits, contact your local Veterans Affairs office or check TRICARE's Web site at www.tricare.osd.mil.
For more information about eligibility and benefits under state Medicaid, contact the state welfare department (Department of Social Services).
For more information about your private health insurance, read your policy carefully and talk with your insurance agent or company benefits counselor about your benefits.
If you are 65 or older, you may be able to get counseling about health insurance benefits at your local senior citizen's center.
For more information about resources to help pay for medications not covered by Medicare or other health insurance, speak to your social worker. Many drug companies have programs to assist individuals who cannot afford to pay for their prescription medications.
How can patients cope with changes in medication and diet?
Taking all your medications and following the recommended diet and fluid restrictions are very important to your success on dialysis or with a transplant. For dialysis patients, failure to cooperate can lead to serious complications such as bone disease, heart attack, stroke and even death. For transplant recipients, it can lead to rejection of the new kidney. Remembering to take new medications can be hard. Medication reminders and pill boxes can help you to remember to take all your medications.
Eating less salt, watching foods high in potassium and phosphorus and limiting fluids can be frustrating. A dietitian who is specially trained to work with patients who have kidney disease can be very helpful. The dietitian will teach you how you can still eat small amounts of restricted foods you like and how to flavor foods with spices instead of salt.
Returning to work and other activities
Should patients with chronic kidney disease be encouraged to return to previous activities?
Absolutely! Although you should not return to activities until you are medically stable, plans to do so should be discussed early on with your doctor. Most likely, the doctor will be very encouraging. When patients and their families return to a more normal routine, they feel much more satisfied with their lives. They also suffer fewer emotional problems such as depression.
Although the need for worthwhile and stimulating activity is important, you and your family must approach these with flexibility and patience. The way you feel from day to day will be less predictable than before. Some activities may no longer be tolerated and others may need to be changed to another time.
Family members are encouraged to continue to pursue their own interests and activities. Giving up their time to meet the needs of their loved one who has a chronic illness often leads to feelings of resentment and can cause the patient to feel like a burden. It can also promote a "sick" role, which is not healthy for the patient or the family.
Can dialysis and transplant patients return to work?
Yes, with their doctor's permission, dialysis and transplant patients are encouraged to return to work. At first, working in addition to following an involved medical program can be tiring. Additional support and encouragement at home and from your health care team are important. Patients who are employed may want to consider taking sick leave or a brief leave of absence instead of giving up their jobs.
When attempting to return to work, you should keep several things in mind. Discuss your disease openly with your employer, to the extent that the disease could affect your ability to do the job. Answer any questions or concerns the employer may have. The employer should be informed that your doctor considers you medically stable to work. Your doctor can provide a letter for your employer stating that you are able to work and any limitations you may have. Special needs such as a change in work schedule should be discussed. If either you or your employer is still uncomfortable about the return to work, a trial period may be helpful, after which both can evaluate the situation.
In addition, dialysis patients receiving treatment in a unit or hospital should request a dialysis schedule that fits best with their work schedule. Many people wo work prefer dialyzing at night because they sleep after dialysis and awake feeling refreshed. Most dialysis units will make it a priority to schedule employed patients on a convenient shift. If you are a CAPD patient, you should ask your employer for a clean, private place to do your CAPD exchanges.
If you receive Social Security Disability, the local Division of Vocational Rehabilitation Office may assist you in returning to a job or retraining you for another job. A phamphlet entitled Working with Kidney Disease: Rehabilitation and Employment is available from the National Kidney Foundation.
People facing dialysis treatment or a transplant may worry that their treatment could cause them to lose their job. A law passed in 1990 (the Americans with Disabilities Act) prohibits discrimination because of disabilities. If you are concerned about discrimination, contact an attorney, the Equal Employment Opportunity Commission (EEOC) or the Department of Labor. For information about filing a claim, call toll-free 800 669-EEOC.
Can I exercise?
Yes. An exercise program approved by the doctor can increase strength and endurance, prevent fatigue, reduce stress and depression and increase the overall quality of day-to-day living. Many patients with kidney failure report being unable to do as much physical activity as before. However, the use of EPO (erthropoetin), a medicine that corrects anemia, is improving the energy levels of these patients and, as a result, they are better able to start and continue a regular exercise program. Successful kidney transplants often increase patients' exercise tolerance to normal levels.
Before beginning an exercise program, it is important to consult your doctor and remember the difference between "doing" and "overdoing." An exercise program should be planned to meet your special needs. Exercising with a family member provides increased safety and companionship. A brochure entitled Staying Fit with Kidney Disease is available from the National Kidney Foundation.
Can I travel?
Yes. Travel for kidney patients requires advance planning, but it can be done. In fact, the ability to travel can be an important part of rehabilitation and a satisfying quality of life.
When planning a trip, hemodialysis patients should make arrangements well in advance with a dialysis unit in the area to be visited (at least four to six weeks in advance, or more during popular touring seasons). Dialysis units are full and may not be able to accommodate unscheduled patients. Friends or family who live in that area can assist you in finding the nearest units by calling their local hospital or the National Kidney Foundation. A staff member in your local unit may be able to assist with dialysis travel arrangements, but generally, the initial contact is the responsibility of the patient or a family member.
In making the arrangements, the dialysis unit will probably request medical information from your local unit. At the same time, information about method of payment will be requested. Many dialysis units bill Medicare for the traveling patient. Usually, the patient must pay the 20 percent balance and wait for any insurance reimbursement. It is important to check with the person who handles the unit's billing about the amount owed. In many dialysis units, doctors' fees are separate and may or may not be billed to Medicare and/or other insurance.
Peritoneal dialysis (PD) patients will need to make plans for back-up medical care if they are going to be out of town for any length of time. The PD nurse or doctor can provide a referral to a transient PD program and make sure the appropriate records are sent. The financial arrangements should be discussed with both units, as the methods of payment for PD services differ.
If you are on a transplant waiting list, notify the staff about how they can reach you at all times. You can also change your status to "on hold" until you return.
Make sure to bring enough of your medicine along. Not all drug stores where you travel may have your needed medicines.
Travel agencies that make reservations for cruises for dialysis patients are also available. It is important to reserve in advance because of the limited numbers of openings. Patients should check with their insurance companies about coverage for dialysis on cruises. Medicare does not cover treatments outside the United State in most cases. For more information, see the National Kidney Foundation booklet Travel Tips for Kidney Patients.
Sexuality and having children
What kinds of changes in physical appearance may occur?
Changes in physical appearance due to chronic kidney disease vary from person to person. Sometimes your skin may become paler or slightly yellow. Some patients may want to use cosmetics to change their skin tone. The skin may become dry and flaky and produce an "ashy" appearance on darker skin tones. It is important to bathe daily and keep skin well-moisturized. Changes may occur in body weight, due to fluid loss or retention or some transplant medicines. You may also notice a changed taste in your mouth and a different smell to your breath. This is due to the buildup in the body of waste materials that are normally removed by the kidneys. Good mouth care can help. Brush your teeth, gums and tongue several times a day. Having dental checkups twice a year is recommended.
In hemodialysis, an access will be made surgically (usually in the arm) to insert the hemodialysis needles. This will appear as a large vein under the skin. However, the arm access does not appear as tubes or "plugs" sticking out of your skin. The skin near the site will become tougher due to the scar tissue that forms from the needle sticks. There will be a slight vibration felt instead of a pulse at the access site. In some cases, when blood vessels in the arm can't be used to make the access, a catheter is inserted into a blood vessel in your chest. This catheter can be hidden by clothing.
For peritoneal dialysis, a catheter will be placed in your abdomen so that exchanges of cleansing fluid (dialysate) can be done. This tube is visible but can be hidden easily with clothing. As with any changes in appearance, you will feel more comfortable once you become used to them.
After a transplant, the anti-rejection drugs can have certain effects on physical appearance. These may include temporary puffiness of face and neck, acne (pimples) and weight gain. Also, there will be a scar in the lower abdomen where the new kidney is placed.
Can patients with chronic kidney disease still enjoy sexual relations?
As with other chronic illnesses, the desire for sexual activity may change with the onset of kidney failure. This varies from one patient to another. Don't be surprised if your interest in social activity is lower. At first, a lot of your energy will be needed for the physical and emotional adjustment to you illness. Impotence, the inability for a man to have or maintain an erection, is common in kidney failure. This may be due to medical causes, such as medicines the patient is taking, anemia, or buildup of toxic wastes in the blood, which may not all be removed by dialysis. Emotional reasons, such as depression, fear of disability or death, or marital problems, can also affect sexual functioning. Couples who find that their sex lives are changing as a result of one partner's kidney failure should talk about the problem with the doctor or social worker because many of these problems can be treated.
While some men and women with kidney failure continue to have sexual problems, many transplant recipients become more active sexually and have fewer sexual problems as their new kidney continues to function. For additional information, see the National Kidney Foundation brochure Sexuality and Chronic Kidney Disease.
Can men with chronic kidney disease still father children?
Men with chronic kidney failure have been known to have less chance of fathering a child. This is due to a lowered fertility or even infertility. Individual cases can be pursued with a doctor. The risk of having a child with birth defects is not increased.
Can a woman who is on dialysis have a baby?
Women with kidney failure, whether or not they have begun dialysis, are usually advised against becoming pregnant. The rate of complications and the risk to both the developing baby and the mother are high. It is important to consult a doctor for further information and advice and to consider birth control. The use of EPO, a special medicine that corrects anemia, may increase the chance of becoming pregnant.
Can a woman who has a transplant have a baby?
Yes. A woman who has had a kidney transplant usually has more regular periods and better general health. Therefore, it is easier for her to get pregnant and have a child. However, pregnancy is not recommended for at least one year after the transplant, even with stable kidney function. In some cases, pregnancy is not recommended because of risk to the mother's life or possible loss of the transplant.
Dealing with emotions
What can patients and their families do about feelings of depression and anxiety?
These feelings are very common. One of the most helpful things you can do is talk about them. Feelings are real and need to be shared. You may have been taught that it is "weak" to cry, but many times that is exactly what you need to do. You and your family will have more difficulty adapting to kidney failure if you hold the sadness and anxiety inside. Other patients can be a good source of support and inspiration. Ask your treatment team or your NKF affiliate for the names of patients you can talk to.
Even the closest family members do not have the ability to read your mind. Expressing your needs is healthy. With the stress of kidney disease, it is important to maintain a sense of warmth and closeness with family and friends. Expressing feelings openly and honestly is important to your family's health and emotional well-being. However, it is important not to make your family members feel guilty about your illness or to take out your anger about your illness on them.
Patients may feel they are a burden to their family. It is important to realize that kidney failure does not happen just to individuals - it happens to families. Sharing your thoughts and feelings freely in an honest, respectful manner can help you and your family. This includes the negative feelings of sadness, anger, fear and resentment. Holding these thoughts and feelings inside results in emotional distance between family members.
How can patients and their families deal with the stress of chronic kidney disease?
What can patients and their families do about feelings of depression and anxiety?
It is important to realize that the stresses and frustrations of kidney failure are real and at times very difficult. Family members may feel as though their world is caving in, especially if they have not faced a major crisis before and the diagnosis was unexpected. They may feel helpless because they cannot do anything about the illness. They may be angry that kidney disease has happened to "their" family. They may fear that the patient may die. They may feel guilty if they did not realize the serious nature of the illness.
A period of confusion and tension may occur as everyone tries to cope with the demands of the illness, the anxiety of treatment, the disruption of everyday life and the sudden "scrutiny" of the health care system. Kidney failure requires changes in lifestyle. Routine chores and activities that require physical strength may be difficult to perform now. Family members or friends may have to take on added responsibilities.
Eventually, family life may return to near-normal, with treatment included as more or less routine.
The following steps can help to lessen the stress:
Talk to the staff at the dialysis unit or transplant clinic.
Write down questions ahead of time and inform family members about changes in treatment.
Find out as much as possible about the illness through the National Kidney Foundation, local or national support groups, written materials and educational classes.
Keep involved in the pleasures, activities and responsibilities of daily living.
Find time to exercise at a level to suit your individual limits.
Share your feelings with family or close friends.
Share your feelings with other patients.
Seek help from the social worker at the dialysis unit or transplant clinic or from an outside counselor, if family or personal problems need further attention.
Find time to enjoy the outdoors.
Try to keep your previous goals and arrange your treatment around your goals.
Be patient and set realistic goals in adjusting to all lifestyle changes.
Is it normal for dialysis patients to feel upset at times with the staff at the dialysis unit?
Yes. A dialysis unit is different from any other health care setting. The unit almost becomes a "second family" because of the amount of time you spend there. The staff genuinely cares about your health and well-being. However, just as it is with family members, it is normal to feel frustrated and angry at them sometimes. Resentment caused by being dependent on other people is the most common cause for these feelings. It is important that you discuss your concerns with the staff in a respectful way. Keeping resentment bottled up inside can affect your treatment, health and adjustment.
When should professional counseling be sought?
Life with kidney disease and its treatment can be upsetting, particularly in the early weeks and months. Most patients and families go through a period of grieving as they try to adjust to complex feelings and make needed changes. Many people wonder if they will be able to cope well enough and whether their feelings are "normal." Most people go through a crisis period at the beginning, but with the support of family, friends, medical staff and other patients, they eventually adjust to life with kidney disease.
Dialysis units and transplant facilities have professionally trained clinical social workers who are available to provide adjustment counseling. Generally, the following may indicate a need for professional help:
Depression lasting more than two weeks
Thoughts about suicide
Loss of appetite or increased appetite
Too much or too little sleep
Loss of interest in activities you used to enjoy
Repeated angry outbursts
Drug or alcohol abuse
Inability to make decisions
Through counseling, patients and families can learn to draw on inner strengths and learn new ways of coping with kidney disease and necessary treatment. If additional professional help is needed beyond what can be provided by the facility social worker, ask for a referral to your local mental health center or private practice counselor (psychiatrist, psychologist or social worker). Remember, asking for help is not a sign of weakness, but of your desire to do well.
Is it normal for kidney patients to have mood swings?
Moodiness is common among kidney patients. It is often thought to be a result of the following factors:
Uremia, or the buildup of waste products in the blood, can be irritating to the nervouse system, causing an increase in irritability mostly in the early stages.
Some medications may cause moodiness or make you seem depressed.
The stress caused by chronic illness accounts for a wide range of feelings and moods. This includes general irritability, anger and frustration over the problems caused by the illness, and feelings of being hopeless and helpless when faced with a life-threatening disease.
How can a spouse handle these changes?
Someone whose husband or wife has always been easy-going and pleasant may find these kind of mood changes upsetting. If a new medication was added, or if a medication was increased before the change in mood occurred, notify the doctor. Understanding that irritability and moodiness may be part of the experience of kidney disease can help the spouse to accept these changes. It may be helpful to talk openly and honestly or remind the patient that this behavior affects others. It is also important to discuss ways to relax when tensions are high. Having a friend or family member to confide in can be helpful to the spouse.
When young adults have kidney disease
How can teenagers with kidney failure handle fears about what friends and schoolmates will think of them?
Teenagers are concerned about how to tell their friends about their disease and how their friends will react. Often, schoolmates will notice the graft or fistula in the patient's arm and ask about it. Friends may wonder why the patient has to go to the hospital or clinic several times a week, instead of being with them. However, teenagers may have some knowledge about dialysis and transplants. They may have seen TV programs about kidney failure or transplants.
Teenagers who have difficulty telling others about this medical problem may not have worked out their own feelings about the illness. Talking with the social worker in the dialysis unit or transplant clinic may help them to work through these feelings. Also, talking to other teenagers with kidney disease about how they deal with things may help. The key is feeling secure and comfortable with themselves; then telling other people becomes easier.
Do many teenagers who have chronic kidney disease feel that their plans for the future are over?
Yes. Most teenagers (and even adults) who have kidney failure feel this way. Having kidney disease affects an individual's life, but the future is far from over. Starting dialysis treatments or having a transplant, following a special diet, and taking medicines are big changes. A kidney transplant may make extra medical visits necessary. Most young people worry about being able to continue with school, earning a living, getting married or having meaningful relationships.
However, many dialysis and transplant patients have completed school and started successful careers. Talking to the social worker at the dialysis unit or transplant clinic about these concerns may be helpful. Other teenagers with kidney failure would be happy to discuss how they cope with setbacks.
Summer camp is a great place to meet other young people with kidney failure. The National Kidney Foundation or a social worker can provide information about the many summer camps available for kidney patients throughout the country.
Another publication available from the National Kidney Foundation, specifically for teenagers, is It's Just a Part of My Life: A Guide for Young Adults with Chronic Kidney Failure.
Can a youngster who has kidney failure safely take part in active sport?
A youngster who is feeling well and enjoys active sports does not want to feel overly protected. Parents may find it difficult to know how far to let their child venture. Talking this over with the doctor will help parents learn whether they are making a decision from a medical or emotional standpoint. Often, a doctor's advice will be based on the type of physical activity (e.g., horseback riding, football).
Holding the reins too tightly mahy make the child angry, rebellious and resentful. It is important to try to maintain a healthy balance between common sense and concern over the child's health and well-being. As time passes and the parents see that their child continues to feel better, they may feel more comfortable with their decisions.
How can a parent handle having to make difficult medical decisions for a child who has chronic kidney disease?
Parents do not have to make decisions about medical care alone. A team of health care professionals is there to help make these decisions, based on the most up-to-date information. The choices are not always easy, and no one can predict the future. Parents always wonder whether they are doing the right thing. It is important to remember that there are no right or wrong answers. Parents must take comfort in making the best decision possible along with the health care team members. Talking this issue over with other parents of children with chronic kidney disease is helpful.
How can the parent of a child who has chronic kidney disease handle discipline?
All parents worry about how best to raise their children. When a child has a chronic illness, this issue becomes even more difficult. Giving in to the child's every whim, or not expecting the child to have any responsibilities in the home, can often create short-term as well as long-term problems. Children need limit-setting, even though they may argue and become angry. Parents who give in all the time may be creating a demanding, spoiled and undisciplined child. Disciplining a child who has kidney failure is not an easy task for parents. Although parents feel worried and protective, they must consider the child's development, and think in terms of trying to maintain as normal a home environment as possible. Other children in the family will notice and be affected by how the child with kidney failure is treated.
Talking with other parents who are in a similar situation is helpful. Becoming involved in a parent support group might help lessen anxieties and concerns. One of the most important things to keep in mind is that there are no right or wrong answers. Parents should remember that they are doing the best they can.
How should parents talk to their child about the death of a close friend in the dialysis unit?
Most people are naturally uncomfortable in this situation, which fortunately, is not common. Talk with the social worder and nurse at the unit to see how they handled telling the other children. Parents should not deny the event for fear of making their child more afraid or unhappy. Although the child may not mention the death, it has not been forgotten; the child may be waiting for you to start the discussion. Generally, children can express their feelings if given the chance. It is important to allow enough time, as one discussion is generally not enough. Parents should be aware of their own feelings about this loss.
Anyone involved with the child who died will feel upset and will need to talk. Communication should be kept open with your child and with the staff. You and your child may need to talk with the social worker if your child's sadness or fears become too hard for you to handle alone. If you are concerned about how your own child is doing medically, you should seek assurance from your doctor.
How should parents explain kidney disease?
A parent's kidney disease can affect his or her children's lives. Discussing the illness and treatment openly with the children, at a level they can understand, can help prevent them from developing fears and misconceptions. Children may dwell on "terrible" things they have done or said and blame themselves for their parent's illness, which can cause problems in the future.
Often, children may begin to behave differently after the parent is diagnosed with kidney failure. Sometimes, they begin to act like "little adults" or "perfect angels." Other times, they begin to misbehave and have problems in school. These are ways children cope with a parent's illness and their fears about that illness. A parent who feels unable to talk to the child should speak with a social worker at the dialysis unit or transplant clinic. The social worker may be able to help both parent and child learn how to talk openly about the treatment and fears related to it. The social worker may refer the family to a family therapist or the child to a child therapist.
Can the responsibility of helping a parent who has chronic kidney disease be harmful for a young child or a teenager?
Although children or teenagers may be glad to help a parent who is learning to adjust to life with a chronic illness (and sometimes with an associated disability), this can cause problems in the long run. The youngster may begin to feel responsible for the parent, leading to a reversal of the usual parent-child roles. When the parent has problems, the child feels at fault.
In growing up, a child must learn to separate from the parent. This becomes a difficult task in situations where the parent has a chronic illness because the child may feel he or she is shirking the duty to help. In some cases, the child may rebel against the illness entirely, causing severe family problems. Rather tan overburden a child, the parent should seek help from a friend of community agency. Public health and social welfare agencies as well as local health agencies may be able to privide help with personal care and housework. This allows the child to grow up normally with the parent still in charge and in the parent role.
What is the best way to help an elderly parent who has chronic kidney disease?
The experience of having an older parent with chronic illness can be difficult. A person who has been independent may find it difficult to accept declining health. However, some people may be quite capable of being independent while on dialysis, and their adult children may be offering help before it is needed. In many families, a slow role-reversal occurs as aging parents become more feeble and dependent. Treating them with dignity and respect while, at the same time, taking more responibility for their care, requires a delicate balance of patience, sensitivity and frankness.
Often one of the adult children becomes the primary cargiver of the parents, either by proximity or a choice to have the parent move in. This can be a burden if the other siblings are not a source of support and help with at least some aspects of the care provided.
Having everyone in the family takl about what is happening can be helpful. A social worker may help facilitate a family meeting if family members have a hard time talking together. The ideal situation is having the family pool all its resources, rather than for one person to carry the load. Joint planning for everyday needs such as cooking, cleaning, transportation and paying bills helps to ensure wise use of family resources.
Adult children can help by going to meetings at the dialysis clinic, learning about kidney disease and its treatment and allowing the parent to talk freely about concerns. They can also help the parent in dealing with the confusing number of agencies, interviews and medical regimens. They should also encourage the parent to continue with as many normal activities as possible, such as church attendance, senior citizen programs, hobbies, travel and visiting with family and friends.
What should the family do if the patient is not following medication and diet guidelines?
Families often confuse love with taking care of the patient. Even with the best of intentions, they can keep the patient in the "sick-dependent" role by taking too much responsibility for the patient's behavior. Generally, patients have a greater feeling of self-worth when they take control of their own behavior. The following suggestions can help to avoid this problem:
Family and staff need to realize that the patient has the illness as well as control over intake of food, fluids and medication. No one else can assume this control.
In many cases, the patient will begin to comply if the family clearly states concerns and limits of responsibility and then backs off.
Being a good caregiver is viewed as loving. However, struggles with the patient over diet, fluids and medicines are often mixed with needs for power and control; feeling responsible and "better than" the patient. This, in turn, makes the patient angry and even less cooperative.
Family members need to make sure that they are not making it more difficult for the patient to stick to the treatment by offering food or liquid not included on the diet.
Working is very important to many people who have kidney failure, also known as end stage renal disease (ESRD). It can help them to have a feeling of value to their families, to society and to themselves. As an employer, you probably have many questions about how hiring or continuing to employ someone with kidney failure could affect you and your business.
What is end stage renal disease?
End stage renal disease is now a fairly common problem in the U.S. population, with about 200,000 patients undergoing treatment. It means that the kidneys have lost about 85 to 90 percent of their ability to function. The kidneys' job is to filter toxic wastes from the blood. These wastes can build up in the body and cause death if not removed by treatment.
How is end stage renal disease treated?
Two types of treatment are available for end stage renal disease ¾ dialysis and transplantation. Dialysis is a method of cleaning the blood by removing the fluid and toxic wastes that the kidneys normally get rid of. Two types of dialysis can be done. The most common is hemodialysis, which involves cleaning the blood by pumping it through a machine that has a special filter called a dialyzer. Hemodialysis can be done at a dialysis center or at home.
The second type of dialysis is called peritoneal dialysis. In this method, a plastic tube called a catheter is implanted in the abdominal wall by a small operation. To do the treatment, the patient places a cleansing solution into his or her abdominal cavity through this catheter. The lining of the cavity acts as a natural filter, and wastes accumulate in the cleansing fluid, which is drained after four to six hours and discarded. While the cleansing fluid is in the patient's abdominal cavities, he or she can go about normal daily activities. Some patients are able to do another form of peritoneal dialysis that can be done during the night while sleeping.
Another form of treatment is a kidney transplant. Kidney transplants can come from living donors who are usually close relatives of the patient or from people who died recently (non-living donors). The success rates of both types of transplants are good.
How does ESRD and treatment affect a person's ability to work?
With medical advances, the treatments and medicines available today help many ESRD patients to feel stronger and have more energy. There may be some fatigue at the beginning while patients are getting used to dialysis treatments. However, this should decrease in time. Studies have shown that most ESRD patients have good attendance records. So employers should rest assured that having an employee who has ESRD does not necessarily mean that the individual will be missing a lot of days. Many people with ESRD are conscientious and valued employees who make a contribution to their place of business.
Patients who choose dialysis may need a temporary reduction of hours to help them ease into their new routine. Those who choose in-center hemodialysis need to go for treatments about three times a week for three to four hours. Many dialysis centers have flexible schedules to accommodate working people, and the employee with ESRD may be able to arrange dialysis treatments in the evenings. If this is not possible, the employee may need to arrange "flex-time" a few days a week, perhaps coming in earlier to make up for leaving early for treatments. Patients who choose home hemodialysis can do their treatments at their convenience so they will not interfere with their work schedule. Patients who do continuous ambulatory peritoneal dialysis (CAPD) will be able to work regular hours, but will need to have a clean, private area in the workplace to do their exchanges (removing the old cleansing fluid and adding fresh fluid). This process takes about a half hour and must be done three to five times every 24 hours. Those who choose continuous cycling peritoneal dialysis (CCPD) can plan to do their treatments at times that will not interfere with their work schedule.
Employees who are candidates for a kidney transplant will need time off for the surgery (one to three weeks) plus some additional time at home before they are ready to return to work. If they expect to get their kidney transplant from a living donor, surgery can be scheduled to meet their needs. If they are on a waiting list for a non-living donor kidney, however, they may need to take time off on short notice, when a kidney becomes available for them. After regaining their strength and returning to work, most transplant patients should be able to resume their regular work schedule.
Will the employee need to be switched to another job?
In some cases, yes. Medical circumstances may limit an employee's ability to do a particular task. For example, if the job involves heavy physical labor, it might be necessary to restructure the job so the employee is using other skills. This will vary according to the individual and the type of job.
How can business accommodate people with ESRD?
Employers can do many things to assist individuals to re-enter or stay in the workplace. Following are some of the ways employers can help:
making the workplace readily accessible
restructuring the job if needed
creating part-time positions
reassigning individuals to vacant positions with different job requirements
creating positions that allow job sharing.
The job description should be clear so both employer and employee understand what is to be performed.
Who pays for ESRD treatment?
Treatment for ESRD is expensive, but the federal government, through Medicare, helps to pay for much of the cost. Often, private insurance or state programs pay for the balance not covered by Medicare. Most dialysis and kidney transplant patients are eligible for Medicare regardless of their age. Home or self-care dialysis patients are eligible for Medicare the first month of dialysis. Patients who receive dialysis at a facility are not eligible for Medicare until the fourth month of treatment; during the waiting period, they must rely on the coverage they had before starting dialysis. Someone who has a transplant before going on dialysis generally is eligible for Medicare coverage starting the month the transplant is done.
If your group insurance plan covers kidney disease and its treatments, the plan may be responsible for some of the employee's bills. The employer group insurance plan would be the primary payer for the first 18 months after the patient becomes eligible for Medicare.
Are any benefits available to employers of someone with ESRD?
In addition to the satisfaction that comes from helping someone, other benefits can come from employing someone with ESRD. For example, if the individual has been working for you for a while, by continuing to employ this person, you will avoid losing someone who is experienced and productive at his or her job. In addition, you will save expenses involved in recruiting, hiring and training a new worker. Tax credits may also be available to companies that hire someone who is certified as medically handicapped by the State Employment Office. (The government considers kidney failure a "handicap.") Tax credits may also be available to employers who make workplace changes to accommodate a handicapped employee.
Are there any laws concerning employment of people with ESRD?
Yes. The Americans With Disabilities Act, a federal law passed in 1990, makes it unlawful to discriminate in employment against qualified individuals with disabilities and requires most employers to make "reasonable accommodations" to remove obstacles to continued employment. ESRD qualifies as a disability under the Act. This law is in effect for businesses that employ more than 15 people.
The Family Medical Leave Act, passed in 1993, allows people emergency time off to care for dependents or themselves if they are too ill to do their work. The individual may return to the same job or one that is comparable to it. This law affects not only those being treated for ESRD but can also be applied to those who decide to donate a kidney to a loved one.
Employers should be informed of such laws and make their employees aware of them. Employers are less likely to be challenged if their employees know their rights.
Why would someone with ESRD want to work if he or she can quality for disability?
While ESRD patients may be eligible for Social Security Disability, many of them express a strong desire to continue their jobs if they are working, or to get back to a job if they have been temporarily unemployed. In many cases, the disability payments will be less than the person's former salary. Someone who was the "breadwinner" of the family may feel a loss of purpose and accomplishment. In addition to earning money, work is a way of enhancing a person's self-esteem. Work also gives people a chance to practice skills and abilities and to socialize with others.
Would other people who work for me be at risk of catching kidney disease?
No. Kidney diseases are not contagious, and there is absolutely no risk to your other employees.
Working With Kidney Disease: Rehabilitation and Employment
If you have chronic kidney disease, you may have questions about finding, keeping or changing jobs.
What does rehabilitation mean for me?
As a kidney patient, your rehabilitation involves:
Return to a healthier state
Having a more positive outlook
Enjoying family and friends
At first, your kidney disease may affect our self-confidence, making it hard for you to think about getting back to activities you used to enjoy. With the help of family, friends and the health care staff, you can begin to get used to your new lifestyle.
How to improve physical strength
Improving physical strength is an important part of rehabilitation. Dialysis treatments or a transplant may improve your health. However, changes in your body caused by kidney failure and treatment may lower your energy level and endurance. Healthy kidneys make a hormone, called erythropoietin (EPO), which helps your body make red blood cells to carry oxygen around the body. When your kidneys are not working well, your body makes less EPO. This means you have fewer red blood cells. Low red blood cell count (anemia) is probably one reason why you get tired easily. A man-made form of this hormone is now used to treat anemia in kidney patients. This treatment has helped many patients feel stronger. To find out if this treatment could help you, speak to your doctor and to the other members of the health care team.
How to feel strong emotionally
Because you have a chronic illness, you may feel afraid or discouraged when you think about the future. You may find the changes in your health hard to handle right now. You may also feel anger, guilt and depression. These feelings are normal and are part of the process of accepting your illness and treatment. You will begin to feel better about your illness and more in control of your life when you learn more about kidney disease and your treatment.
It is important for you to know that depression can be treated. The first step is to change negative self-talk ("I'm never going to feel better") to positive self-talk ("I'm getting a little better every day"). Even this can help if repeated several times a day. Talk about your feelings with your family, with friends and with members of your health care team. Your social worker is trained to help you with emotional concerns. He or she can provide counseling or help you and your family find community agencies that offer individual, family or group counseling. Your local National Kidney Foundation Affiliate can also provide information, understanding and support.
Is leave of absence necessary?
Many people who start on dialysis are able to return to work after a short time off. For those having a transplant, the time off may be longer. Many kidney patients look forward to returning to work as soon as possible. For these people, returning to work and its routine, helps them feel more normal. For others, thinking of returning to work may seem too much now. Talk to your doctor about when you should be able to return to work. Talk to your employer about your job and any changes that may be needed for you to return to work, such as flexible work hours and days. If you have a heavy job, you may want to talk about changing to a lighter job. If you do continuous ambulatory peritoneal dialysis (CAPD), you may need to talk about a place at work to do an exchange. Only you can decide when is the best time for you to return to work.
Are there community resources to help me find a job?
There are public and private agencies to help people find jobs. Some of these agencies can help you decide what you want to do, write a resume and practice interviewing so you feel more confident. Agencies you may have heard of are:
City and State Personnel Departments/Job Service Centers
Federal Job Information Centers Veterans Action Centers
YMCA job banks
Local or Regional Offices of Vocational Rehabilitation (Rehabilitation Services Administration)
State Client Assistance Program
Your social worker can help you with information about these agencies. Many National Kidney Foundation Affiliates have listings of local rehabilitation agencies. Rehabilitation can also include going back to school. Guidance counselors at local schools or colleges can help you. Some agencies may help pay for training.
How to prepare for job hunting
You may want to prepare a resume which is a record of your education and work history. It includes:
your name, address and telephone number
a summary of your work experience (paid and volunteer)
special skills that may help you qualify for the job
You may want to include names of persons who know you and would recommend you for the job.
How to handle job interviews
During the job interview, talk about what you do well. Do not be afraid to include any skills you learned doing volunteer work. Ask questions about the company and the job. You will look good to employers if you show you are interested and want to learn.
Talking to your employers about your illness and treatment
During the interview, you do not need to tell a potential employer about any illness if it will not interfere with your ability to do the job for which you are applying. Many employed patients have suggested that you should discuss any special needs you might have with the employer after you settle other details of the job. Your employer cannot make changes in the job or the workplace for you if you have not asked for help.
Potential employers may know very little about kidney disease and how it affects your ability to work. They may be concerned about how much work you can do and how much time off you will need. They may also be concerned about how much it will cost the company to provide health benefits to you. You may want to ask your doctor or health care staff to talk with your employer. A little information about your illness, abilities and limits can do a lot to ease concerns.
You may want to discuss the following:
Can the work schedule be changed to allow for dialysis treatments or doctor's appointments? Will you be able to make up time off for dialysis? Can your dialysis schedule be changed to accommodate work hours?
What are the physical demands of the job and any limitations you might have?
What information does the company medical staff need in case of an emergency?
Can you have the company's health insurance and will it cover ESRD care?
Employers may not know that tax credits may be available to companies that hire someone who is certified as medically handicapped by the State Employment Office. (The government considers kidney failure a "handicap.") Also, they may not know about tax credits they can get for making workplace changes.
Are there laws to protect against job discrimination?
According to the Rehabilitation Act of 1973 and 1993, people with kidney failure cannot be turned down for a job or promotion or be fired because of their disability if they can do the assigned job. The Americans With Disabilities Act (ADA) now applies to public and private employers with 15 or more employees. The Act requires employers to make reasonable accommodations" to help the disabled. This includes making parking, bathrooms, and work areas accessible to the handicapped; having flexible work schedules; reassigning employees to less strenuous positions if available and assigning non-essential tasks to another employee.
Under the Family and Medical Leave Act (FMLA), if a person with kidney failure is temporarily unable to perform any essential job functions as defined by the ADA, he or she may be eligible to take FMLA leave. Up to 12 weeks can be taken at once or in increments as small as 15 minutes during a given 12 month period. The employer has to maintain group health coverage and can't use the leave to negatively impact the employee's benefits. After the leave, the employer must reinstate the employee to the same or equivalent position with the same pay, benefits, and working conditions. If an employee needs to provide care or transportation for a spouse, child, or parent, he or she is eligible for FMLA leave. The employer can require certification by a health care provider of the health condition or the care needed. To qualify under the FMLA, the employee must work for a public agency, public or private school, or company with 50 or more employees who live within 50 miles of their workplace. The Department of Labor is charged with reviewing FMLA complaints.
Do you have to take a physical exam?
The Americans With Disabilities Act states that your employer may not ask you to take a physical exam until after a job offer has been made unless all other applicants for that job are required to take a physical. You can be tested for drugs, however. If the job offer is taken back after you have taken a physical exam, the company must prove that you cannot do the "essential functions" of the job. For more information on the Americans With Disabilities Act, talk with your social worker or contact your local National Kidney Foundation.
Are you entitled to company health insurance?
If the company offers benefits including health insurance, you can only be denied health insurance if the company's policy does not cover chronic kidney failure and its treatment or if employees in similar jobs are not offered health insurance benefits. You may have to go through a waiting period for pre-existing conditions if others with pre-existing conditions must also wait. By law, a group health plan is a primary payer for the first 18 months after Medicare entitlement. The state insurance commissioner's office can tell you more about the laws that apply to group health insurance companies in your state.
Help is available for those who have been discriminated against
If you feel you have experienced discrimination at work because of kidney disease, there are several places you can go for help. Equal Employment Opportunity Commission staff suggest that you start locally. If you are employed, file a grievance through your company's grievance channels. Local unions can be helpful if you are a union member. If these options are not available, your city's Human Rights Department may be able to help. On the state or federal level, you can contact the Human Rights Commission, the Department of Labor or the Equal Opportunity Commission. You can find their phone numbers in the telephone book. Your social worker or your National Kidney Foundation Affiliate can also help you.
Where to go for financial help
Unless you have other income, if you can't work you will probably need financial help. Many kidney patients face temporary or permanent loss of earned income sometime. Fortunately you may be able to get help. Your social worker can help by giving you information about services and who qualifies for them. Some of the programs that may help include:
Social Security Disability Insurance (SSDI) can pay monthly benefits. It is administered by Social Security for those who have a disability that is expected to last at least a year. An application is required and there is a five month waiting period. Benefits are paid based on your earnings under Social Security, not your family's income or savings (resources).
Supplemental Security Income (SSI) can pay monthly benefits. It is administered by Social Security for those who have little or no Social Security work history and who have a disability that is expected to last at least a year. An application is required which can take up to 45 days to process. Benefits are based on your family's income and savings (resources).
Individual state assistance programs include general assistance, aid to families with dependent children, food stamps, etc. These programs can provide monthly financial assistance to those with low incomes. It may take time to see if you qualify. Benefits are based on income and savings.
Medicaid can provide financial help with expenses for health care, many medicines and, in some states, transportation. It is run by the state welfare department. It takes time to process your application. Benefits are based on income and savings.
Some states have kidney programs that provide benefits. Each program is different and may include: coverage for treatment, medicine and transportation assistance. Benefits may be based on income and savings.
Department of Veterans Affairs benefits may provide shopping privileges, a monthly pension or coverage for health care, care at home, or care in a nursing home. Military service is required. For some benefits, service must have been during wartime. For others, you must have a service-connected disability.
Bureau of Indian Affairs provides coverage for health care and financial help for Native Americans living on reservations.
Vocational Rehabilitation can provide evaluation, training, counseling, job placement services and some financial benefits to physically or mentally disabled people. It is run by state departments of Vocational Rehabilitation. It may take several months to see if you qualify, develop a plan, get needed training and help you get a job. Benefits are not based on income or savings.
Community service agencies and charitable organizations, including some National Kidney Foundation Affiliates, can provide temporary financial help with food, housing, medicines, etc., to low income persons in need. Some National Kidney Foundation Affiliates also provide job training programs. Talk to your social worker about these programs. You may need to be referred by your social worker.
Programs that help kidney patients get back to work
There are programs that help patients move slowly toward independence in the workplace. These are called work incentive programs. Both Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) offer work incentive programs. An example of a work incentive program offered under SSDI is the trial work period. This allows you to receive full disability payments for nine months (not necessarily one right after another) no matter how much you earn from working. Work income less than $200 a month does not count against the trial work period. An example of a work incentives program offered under SSI is the Plan for Achieving Self-Support (PASS). This allows you to write a plan to go to school, set up a business or even buy a car to help you become self-supporting. Money for these expenses can be set aside without reducing SSI income for a period of up to 48 months. For more information about these and other Social Security work incentive programs, talk to your social worker or to your local Social Security Office.
Why look for work if you can get disability benefits?
Work and being independent are strong values for Americans. Many people base the way they think of themselves on their ability to work and the job they do. Returning to work when possible can help you to feel better about yourself. Working can help you to have a more positive outlook and give you the chance to be with others. If you are not able to work, it is important to find something that you enjoy and do it. Volunteering for your church, a school, a hospital, or an agency is another way to feel worthwhile besides work.
Living With One Kidney
The kidneys perform many functions that are vital to good health. It is not unusual, however, to have only one kidney to do the work that two kidneys ordinarily do.
Why do people have a single kidney?
Many people are born with a single kidney. This occurs in about one out of 750 people. Being born with a single kidney is more common in males, and the left kidney is the one more often absent. The ureter (the tube that takes urine from the kidney to the bladder) on the affected side is usually abnormal or absent. An abnormality of the reproductive tract may also be seen on the same side. This occurs more often in females than in males.
In other cases, one kidney may need to be surgically removed, leaving a single remaining kidney. A kidney may need to be removed because of an anatomic abnormality such as obstruction, or because of a tumor, or from a severe traumatic injury after an accident. One kidney may be donated to a loved one with kidney failure.
How is a single kidney different?
The single normal kidney will grow faster and get larger than a normally paired kidney. For this reason, the single kidney is larger and heavier than normal, and it is, therefore, more vulnerable to injury. It is important to be aware of the increased risk for injury with certain heavy contact sports, so that careful decisions may be made regarding participation in various physical activities. The American Academy of Pediatrics, American Academy of Family Physicians and the Medical Society of Sports Medicine have suggested that people with one kidney avoid sports that involve higher risks of heavy contact or collision. This includes boxing, field hockey, football, ice hockey, Lacrosse, martial arts, rodeo, soccer and wrestling. Anyone with a single kidney who decides to participate in these sports should be extra careful and wear protective padding. He or she should understand that the consequences of losing a single kidney are very serious.
Are there long term problems for people with a single kidney?
In general, most people with a single normal kidney have few or no problems, particularly in the first few years. However, some longer-term problems have been recognized. Most doctors believe that people with a single kidney, particularly from birth or during early childhood, should be followed more closely than people with two normal kidneys. Children who have had a kidney surgically removed may have a slightly increased chance of developing abnormal amounts of protein in the urine and some abnormality in kidney function by 25 years later. Similar abnormalities have been found in individuals born with a single kidney. In addition, there is greater chance of developing high blood pressure. The decrease in kidney function is usually mild, and life span is normal.
Are dietary changes needed?
In general, special diets are not needed by individuals who have one healthy kidney. Speak to your doctor or a registered dietitian if you have questions about the basic ingredients of a healthy diet.
How often should someone with one kidney see a doctor?
A urinalysis (urine test) and blood pressure check should be done yearly, and kidney function should be checked every few years, or more often if an abnormal urinalysis or blood pressure is found.
What special precautions are recommended for transplant patients?
Because the transplanted kidney is usually placed into the pelvis, these kidneys are in a location providing less protection and, therefore, are more easily injured. Consequently, the same recommendations of avoiding heavy contact and collision sports apply to the people who have had a kidney transplant.
Careful testing has shown that the transplanted kidney can increase its function as in other situations resulting in a single kidney, reaching a level of function that is about 40 percent greater than a normal level for a single kidney.
What if I have more questions?
If you have more questions, you should speak to your doctor.
Travel Tips: A Guide for Kidney Patients
For many patients who are on dialysis or have had a kidney transplant, the ability to travel is important to their self-esteem and lifestyle. Working patients may need to attend business meetings or conferences. Older patients may have dreamed of traveling during their retirement. A family event such as a wedding, graduation or family reunion may require travel away from home. At times, emergencies such as illness or a death in the family may require travel.
Is it possible for kidney patients to travel?
Yes, most patients who receive dialysis or have had a kidney transplant can travel safely and continue their treatment while away from home. Of course, you should always consult your doctor before planning to travel. Most doctors encourage travel if the patient's health is stable. Traveling can give a big boost to a patient's morale and sense of well-being.
How should hemodialysis patients begin to plan a trip?
Many dialysis centers have a staff member who is experienced in arranging dialysis treatments away from home (transient dialysis). Some centers will assist patients in making their own arrangements. Ask your social worker or primary nurse if there is such a person at your center.
It is important to start planning at least six to eight weeks in advance. More time should be allowed for popular vacation spots or travel during holidays. Be flexible about the dates for your trip as space in dialysis units may be limited. If you would prefer to have your treatments on specific days and at specific times, let the center know in advance. The unit may not always be able to honor your request, however, because space is limited.
You or your patient travel coordinator may need to contact more than one center in order to find a center that can provide dialysis for you. Check with the center as soon as you arrive to confirm your appointment. You may also want to visit the center and meet the staff so you will feel more comfortable. Before doing this, however, make an appointment with the social worker or nurse manager of the dialysis center you plan to visit.
How will I find a center to dialyze at?
If you plan to visit friends or family out of town, they may be able to give you the name and address of the dialysis center nearest them. Resource publications are available at your center listing dialysis centers around the world that are willing to accept transient dialysis patients. Your social worker or the patient travel coordinator at your center will be able to assist you.
What if I need to travel in an emergency?
Many dialysis centers make every effort to accommodate patients in the event of an emergency such as illness or death of a family member. Dialysis records can be faxed ahead, or you can hand carry them with you.
What information will my transient dialysis center need to safely provide dialysis for me?
Most dialysis centers require the following information in order to assess your health and plan for your treatments with them:
the dates you need dialysis treatment
your name, address, etc.
medical history and recent physical exam reports
recent lab results
recent chest x-ray
your dialysis prescription and 3 to 5 recent treatment records
dialysis access type
special needs or dialysis requirements
information about your general health
where you will be staying in the area
a list of the medications you take during treatment and at home.
This information will be sent to your destination center for review. It is important for the doctor and transient center to know as much about you as possible in order to care for your needs while visiting their center. In addition to mailing your records to the center, you should hand carry a copy with you.
How can I be sure about the quality of care I will be getting away from my regular center?
You may want to ask the following questions when making your arrangements for hemodialysis during your trip:
Does the center reuse dialyzers?
Does the center reuse bloodlines?
What is the average treatment length of dialysis at the center?
Can they provide the treatment time your doctor has prescribed?
What are the hours and days of operation? Traveling patients often are placed on an evening shift, which could end as early as 7:30 p.m. or as late as 2:00 a.m.
What types of dialyzers are used?
Can you use the same type of dialyzer you use at your home center?
What types of dialysis machine does the center have (conventional, high flux capability)?
Does the center routinely provide lidocaine?
Are patients permitted to eat or drink while on dialysis?
Is an ice machine available for patients?
Is public transportation available to get to the center?
How many patients are assigned to each nurse or patient care technician?
Can you get all the medications you get at your home center during dialysis?
What if I get sick while I am visiting another center?
Don't overdo it! Be realistic when planning activities. Allow enough time to enjoy sightseeing outings and activities without becoming overtired. Also, be sure to watch your diet and fluid intake. Before you begin your trip, you will most likely have a doctor assigned to you by your transient dialysis center. Find out how to contact the doctor when you first arrive. If you do become ill, call the dialysis center or doctor as instructed.
It is possible that a transient patient may require hospitalization. If this should happen to you, your transient doctor is prepared for this possibility and will care for you during your hospital stay. He or she will probably talk to your regular doctor to coordinate your care. You may feel more comfortable to know if this coordination has taken place. Being hospitalized while away from home can be a stressful experience for any patient, and it certainly can change your travel plans. Preparing ahead for this possibility can help make the experience less stressful. The following suggestions may be helpful:
Make sure your family knows your travel plans.
Make sure you have important phone numbers with such names as your regular doctor, dialysis center, etc. Have a copy of your medical records with you while traveling.
Make sure anyone who is traveling with you knows where you keep your records and what your medical needs are.
Make sure to bring enough of the medications you need to take to last for the entire trip, with enough extra to deal with possible emergencies such as lost luggage or a spill. Also carry written prescriptions just in case.
Is home hemodialysis possible on a trip?
Yes, although most home hemodialysis patients make arrangements for in-center treatments while traveling. Patients who wish to continue doing their own treatment while traveling should check with their dialysis care team about whether they can do home dialysis away from home. Some patients travel with their machines, supplies and portable water treatment equipment. An example would be people who have dialyzed in campsites equipped with hook-ups for electricity.
Even if you do your own treatment, it is important to know where the closest dialysis center is where you could go for assistance. Let the center know when you will be in the area, and ask if they would be willing to provide medical assistance if needed. Carry complete medical information with you. Remember that most dialysis and equipment companies have toll-free numbers for assistance 24 hours a day. Carry these numbers with you.
What should peritoneal dialysis patients know about traveling?
Traveling is often easier for peritoneal dialysis patients because they are not dependent on the availability of a dialysis unit. Peritoneal dialysis patients still need to plan ahead and arrange for back-up medical care for their trips, as do hemodialysis patients. Typically, this would mean contacting a dialysis center in the area where you will be and asking if they would be available should a problem arise. The center may request a copy of your medical records in advance. In any case, you should always carry a copy of your records with you as well.
CAPD patients should carry enough supplies for the length of the trip, plus some extra supplies in case of problems. It may also be possible to arrange for delivery of supplies to your destination for longer stays. Make sure these supplies have arrived before you leave on your trip. CAPD patients also need to plan for adequate clean space where they may do their exchanges while traveling.
CCPD patients who plan to travel for one week or longer can arrange for supplies to be delivered to their destination. Smaller cycler machines are now available, which are easy to carry on airplanes and to use in hotel rooms, campers, etc.
Is it possible to travel if you are active on a transplant waiting list?
Yes. Simply inform your transplant coordinator about your travel plans. The coordinator will help you decide whether to be "on hold" during the trip or whether you would be able to return within a reasonable amount of time if a kidney became available. Arrange to be contacted in the event a kidney becomes available.
What should diabetic patients know about traveling?
Since the unexpected may happen during a trip and meals may be delayed, you should carry glucose tablets and appropriate snacks, such as low-potassium juice boxes or hard candy, to treat low blood sugar. It's a good idea to travel with a "brown-bag" lunch or a packaged nutritional supplement in case of delays. Managing your diabetes can be made simpler by having insulin, syringes and blood glucose monitoring supplies handy.
Will my insurance cover treatment during travel?
If Medicare is your primary insurance coverage, Medicare will pay for 80 percent of your treatment costs within the U.S. and its territories. You will be responsible for the remaining 20 percent not covered by Medicare. If you have secondary insurance, it may cover this 20 percent. However, you may have to pay this 20 percent "up front" and bill your insurance later. Check with the transient center about their policy on this. Most state Medicaid programs will not pay for treatment outside of your home state.
If you have commercial insurance as your primary insurance, you may need to request a letter from your insurance company stating they will pay for your treatment at the transient dialysis center. Some commercial insurance will pay for dialysis outside of the U.S. Transient dialysis centers will often call and verify this coverage themselves. Be sure to allow enough planning time to make these arrangements.
A doctor's fee may also be charged by the transient dialysis center. Be sure to ask what portion of this charge will be your responsibility.
Where can I get more information?
Following is a list of other resources you may find helpful:
Easy Access to National Parks, by Sierra Club Books, available at bookstores or order from the Sierra Club at 1-800-935-1056.
Management of Diabetes During Intercontinental Travel, available free from The Diabetic Traveler, P.O.. Box 8223 RW, Stamford, CT 06905; (203) 327-5832.
"The List," a comprehensive list of international dialysis centers accepting transient patients. Available from Dialysis & Transplantation, 7628 Densmore Ave., Van Nuys, CA 91406-2088. (Most dialysis centers have a copy.)
Also available are companies that specialize in vacation and travel planning for dialysis patients, such as cruises, foreign travel, and wilderness travel. Camps are available for dialysis and transplant patients (both adults and children). Contact your local National Kidney Foundation office for more information and a directory of camps. Your health care team can also give you more information about these options.
Hand carry essential medical information, your medicines and other medical supplies in case of the unexpected, such as lost luggage.
Bring enough of your medications to last for your entire trip, with enough extra to deal with possible emergencies. Also carry written prescriptions just in case.
If you need extra assistance boarding a plane or train, inform personnel when you check in so they can give you special instructions.
If you are planning to travel by plane or train, make arrangements for any special meals such as low-salt, low-fat or diabetic, at the time you make your reservations.
When making a hotel reservation, you can request a first-floor room or a handicapped-accessible room, if stairs or distances are a problem.
If you use a travel agent, tell the agent about any special needs you may have, such as special meals, accessible rooms, and assistance while changing planes. The agent can also advise you about special considerations regarding safe transport of dialysis supplies while traveling to foreign countries.
©2010 National Kidney Foundation. All rights reserved. These materials do not constitute medical advice. These are intended for informational purposes only. No one associated with the National Kidney Foundation will answer medical questions via e-mail. Please consult a physician for specific treatment recommendations.