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The first step in a diagnosis of celeriac disease is a blood test, once diagnosed, a lifelong gluten-free diet is the only medicinejournalworld provides trusted health information regarding Cancer, Digestive Disease, Genomic Medicine, Neurological, Orthopedics, Respiratory, lungs, Urology, Kidneys, dental treatment, when your treatment starts, free tools, news and doctor-reviewed resources to encourage a healthy living for you and your loved ones.

Friday, January 9, 2015

Dialysis: Deciding to Stop

There may come a time when you feel you want to discontinue dialysis treatment. You may feel that dialysis is no longer maintaining or improving your quality of life. If this occurs, it is important to know that you have the right to make the decision to stop dialysis. However, before making this decision, it is important that you discuss it carefully with your loved ones and treatment team.

Can I really stop dialysis treatment if I want to?

Yes, dialysis patients are allowed to make decisions about stopping dialysis treatment. You are encouraged to discuss your reasons for wanting to stop treatment with your doctor, other members of your health care team and your loved ones before making a final decision.

If I ask to stop dialysis, how will the health care team at my unit respond?

The members of your health care team will want to have a clear understanding of why you made this decision (worsening health, specific treatment problems, depression) to determine if any improvements might be made that could affect your decision. Your doctor, social worker and nurse may all speak to you and encourage you to talk openly about your feelings.

How do I discuss my decision with my family and friends?

Many people find it difficult to talk to loved ones about stopping treatment, and they worry about how others will feel and react. Although you may find it hard at first, the best approach is to discuss your feelings openly with your loved ones. You may wish to have members of your health care team (like the doctor, primary care nurse or social worker) present when you speak with them.

Can any changes be made in my treatment that might improve my quality of life?

Maybe. If you are thinking about stopping dialysis because of specific treatment or other medical problems, your doctor might be able to make some changes that would improve your situation.

Will I be asked to speak to a mental health professional?

You might. If your health care team is concerned that you want to stop dialysis for solely emotional reasons or because you are suffering depression, you may be asked to speak with a psychiatrist, social worker or other counseling professional. Depression may be treated successfully with counseling, medicine or a combination of both. The team may also want you to speak with a mental health professional to make sure you understand the full impact of what stopping dialysis will mean.

Is stopping dialysis considered suicide?

Many religions teach that individuals have the right to stop treatment, including dialysis, if they feel it is not helping and is burdensome. You may wish to speak with your religious adviser if you have concerns about this.

How long will I live if I choose to stop dialysis?

This varies from person to person. People who stop dialysis may live anywhere from one week to several weeks, depending on the amount of kidney function they have left and their overall medical condition.

What should I expect after stopping dialysis?

Death from kidney failure is usually painless. However, if you do feel any discomfort, pain medicine may be prescribed for you. Without your dialysis treatment, toxic wastes and fluid will build up in your body, making you feel more tired. The fluid build-up can make it more difficult for you to breathe, but your doctor can prescribe diuretics or a treatment called ultrafiltration to remove fluid and make breathing easier for you. The doctor may also recommend that you limit your intake of salt and fluids to reduce fluid weight gain.

What type of food and drink could I have?

Typically, there is no reason for you to continue to follow your renal diet at this time. Your doctor and dietitian can answer other specific questions you may have about diet.

Will my renal health care team continue to help me?

Absolutely. Your team should remain available to you and your loved ones. Your doctor and primary nurse can advise you about the type of care you might need, and your social worker can help you arrange for care as well as provide emotional support to you and your loved ones.

Can I get hospice care?

Usually. If you choose to stop dialysis, you are considered to be in a terminal state and you are eligible for hospice care. The type of hospice care available may be either a home hospice program or a hospice facility. Your social worker can help you and your loved ones in making arrangements for hospice care.

Do I have a choice of where I die?

Your wishes about where you want to die will be honored as much as possible. Many people choose to die at home, where they feel more comfortable in familiar surroundings. If you choose this option, your social worker can assist you and your family in making any special arrangements for your care at home. A nursing home may be another option for some patients. A hospital admission is not always available, depending on the nature of your insurance coverage and your overall medical condition. Your health care team can help you decide if hospitalization is an option for you if you wish.

If I choose to die at home, can I get a home health care worker to help my loved ones?

The types of services covered at home will depend on your insurance. If you are in a home hospice program, a home health aide may be available to assist. If your insurance does not cover a home health aide and you and your loved ones wish to pay privately for these services, you can do so. Your social worker can usually assist in arranging these services.

Will I still be covered by Medicare and/or my private medical insurance if I stop treatment?

Your Medicare coverage will not end, even if you decide to stop dialysis. It is important that you and your family speak with your doctor about the type of care you will need. Once this is decided, you can check on whether your insurance will cover this care.

If I change my mind, can I go back on dialysis? Will I feel sicker if I do?

You may go back on dialysis if you change your mind. If you have missed several treatments, you may have some discomfort when you first start dialysis again. You should discuss the possibility of returning to dialysis with your doctor.

Can I name someone to make decisions for me if I am not able to act on my own behalf?

You can name someone (such as a spouse, adult child or close friend) to make medical decisions for you, such as stopping dialysis, in case you are no longer able to make these decisions for yourself. This is done by filling out a form called a health care proxy or a durable health care power of attorney. The person you name to make medical decisions for you is called a surrogate. It is important to make sure the person is willing to act on your behalf and that he or she knows your short- and long-term goals, values and what treatments you would or would not want to have if you were not able to speak for yourself. It is helpful if you complete a form called a treatment-specific living will, which will give your surrogate clear directions about your wishes regarding stopping dialysis and/or other medical treatments.
The role and responsibilities of the surrogate, as well as the types of decisions the surrogate may make, may vary from state to state, depending on the law of that state. Generally, the surrogate must follow your wishes. For more information about naming a surrogate and about the laws in your state, you may speak with an attorney or the social worker at your unit. To obtain copies of the forms used in your state, you may contact your local or state bar association or contact Choice in Dying, 1035 30th Street NW, Washington, DC 20007, (800) 989-WILL.

What should I do if I decide to stop dialysis treatment?

If you decide to stop dialysis treatment, you or your surrogate may want to make sure the following items are in order:
  • Your will.
  • Signed advance directive (living will, durable health care power of attorney or health care proxy) complying with your state law.
  • A durable power of attorney, complying with your state law, naming someone to act on your behalf on all matters other than medical (e.g., legal, financial, banking and business matters). Your power of attorney must be a "durable" one in order to stay in effect even if you become unable to make your own decisions or if you die.
  • An inventory, including the location of your bank, brokerage and other financial accounts, stock and bond holdings, real estate and business records, medical and other insurance policies, pension plans and other legal papers.
  • Names, addresses and telephone numbers of your attorney, accountant, family members and other loved ones, friends and business associates who should be notified of your death or who may have information that will be helpful in dealing with estate affairs.
  • A statement about your preference for funeral/memorial services, burial or cremation instructions and decisions about organ and tissue donation.
  • Written or video- or audio-taped message to family members and other loved ones, business associates and friends.

Treatment Methods for Kidney Failure: Hemodialysis

Hemodialysis is the most common method used to treat advanced and permanent kidney failure. Since the 1960s, when hemodialysis first became a practical treatment for kidney failure, we've learned much about how to make hemodialysis treatments more effective and minimize side effects. In recent years, more compact and simpler dialysis machines have made home dialysis increasingly attractive. But even with better procedures and equipment, hemodialysis is still a complicated and inconvenient therapy that requires a coordinated effort from your whole health care team, including your nephrologist, dialysis nurse, dialysis technician, dietitian, and social worker. The most important members of your health care team are you and your family. By learning about your treatment, you can work with your health care team to give yourself the best possible results, and you can lead a full, active life.

When Your Kidneys Fail

Healthy kidneys clean your blood by removing excess fluid, minerals, and wastes. They also make hormones that keep your bones strong and your blood healthy. When your kidneys fail, harmful wastes build up in your body, your blood pressure may rise, and your body may retain excess fluid and not make enough red blood cells. When this happens, you need treatment to replace the work of your failed kidneys.

How Hemodialysis Works

In hemodialysis, your blood is allowed to flow, a few ounces at a time, through a special filter that removes wastes and extra fluids. The clean blood is then returned to your body. Removing the harmful wastes and extra salt and fluids helps control your blood pressure and keep the proper balance of chemicals like potassium and sodium in your body.
One of the biggest adjustments you must make when you start hemodialysis treatments is following a strict schedule. Most patients go to a clinic—a dialysis center—three times a week for 3 to 5 or more hours each visit. For example, you may be on a Monday-Wednesday-Friday schedule or a Tuesday-Thursday-Saturday schedule. You may be asked to choose a morning, afternoon, or evening shift, depending on availability and capacity at the dialysis unit. Your dialysis center will explain your options for scheduling regular treatments.
Researchers are exploring whether shorter daily sessions, or longer sessions performed overnight while the patient sleeps, are more effective in removing wastes. Newer dialysis machines make these alternatives more practical with home dialysis. But the Federal Government has not yet established a policy to pay for more than three hemodialysis sessions a week.
Illustration of a dialyzer.
Hemodialysis.
Several centers around the country teach people how to perform their own hemodialysis treatments at home. A family member or friend who will be your helper must also take the training, which usually takes at least 4 to 6 weeks. Home dialysis gives you more flexibility in your dialysis schedule. With home hemodialysis, the time for each session and the number of sessions per week may vary, but you must maintain a regular schedule by giving yourself dialysis treatments as often as you would receive them in a dialysis unit.

Adjusting to Changes

Even in the best situations, adjusting to the effects of kidney failure and the time you spend on dialysis can be difficult. Aside from the "lost time," you may have less energy. You may need to make changes in your work or home life, giving up some activities and responsibilities. Keeping the same schedule you kept when your kidneys were working can be very difficult now that your kidneys have failed. Accepting this new reality can be very hard on you and your family. A counselor or social worker can answer your questions and help you cope.
Many patients feel depressed when starting dialysis, or after several months of treatment. If you feel depressed, you should talk with your social worker, nurse, or doctor because this is a common problem that can often be treated effectively.

Getting Your Vascular Access Ready

Arm with an arteriovenous fistula.
Arteriovenous fistula.
One important step before starting hemodialysis is preparing a vascular access, a site on your body from which your blood is removed and returned. A vascular access should be prepared weeks or months before you start dialysis. It will allow easier and more efficient removal and replacement of your blood with fewer complications. For more information about the different kinds of vascular accesses and how to care for them, see the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) fact sheet Vascular Access for Hemodialysis.

Equipment and Procedures

When you first visit a hemodialysis center, it may seem like a complicated mix of machines and people. But once you learn how the procedure works and become familiar with the equipment, you'll be more comfortable.
Illustration of a looped graft.
Graft.

Dialysis Machine

The dialysis machine is about the size of a dishwasher. This machine has three main jobs:
  • pump blood and watch flow for safety
  • clean wastes from blood
  • watch your blood pressure and the rate of fluid removal from your body

Dialyzer

Illustration of a hollow fiber dialyzer.
Structure of a typical hollow fiber dialyzer.
The dialyzer is a large canister containing thousands of small fibers through which your blood is passed. Dialysis solution, the cleansing fluid, is pumped around these fibers. The fibers allow wastes and extra fluids to pass from your blood into the solution, which carries them away. The dialyzer is sometimes called an artificial kidney.
  • Reuse. Your dialysis center may use the same dialyzer more than once for your treatments. Reuse is considered safe as long as the dialyzer is cleaned before each use. The dialyzer is tested each time to make sure it's still working, and it should never be used for anyone but you. Before each session, you should be sure that the dialyzer is labeled with your name and check to see that it has been cleaned, disinfected, and tested.

Dialysis Solution

Dialysis solution, also known as dialysate, is the fluid in the dialyzer that helps remove wastes and extra fluid from your blood. It contains chemicals that make it act like a sponge. Your doctor will give you a specific dialysis solution for your treatments. This formula can be adjusted based on how well you handle the treatments and on your blood tests.

Needles

Many people find the needle sticks to be one of the hardest parts of hemodialysis treatments. Most people, however, report getting used to them after a few sessions. If you find the needle insertion painful, an anesthetic cream or spray can be applied to the skin. The cream or spray will numb your skin briefly so you won't feel the needle.
Most dialysis centers use two needles—one to carry blood to the dialyzer and one to return the cleaned blood to your body. Some specialized needles are designed with two openings for two-way flow of blood, but these needles are less efficient and require longer sessions. Needles for high-flux or high-efficiency dialysis need to be a little larger than those used with regular dialyzers.
Illustration of an arm with arterial and venous needles.
Arterial and venous needles.
Some people prefer to insert their own needles. You'll need training on inserting needles properly to prevent infection and protect your vascular access. You may also learn a "ladder" strategy for needle placement in which you "climb" up the entire length of the access session by session so that you don't weaken an area with a grouping of needle sticks. A different approach is the "buttonhole" strategy in which you use a limited number of sites but insert the needle back into the same hole made by the previous needle stick. Whether you insert your own needles or not, you should know these techniques to better care for your access.

Tests to See How Well Your Dialysis Is Working

About once a month, your dialysis care team will test your blood by using one of two formulas—URR or Kt/V—to see whether your treatments are removing enough wastes. Both tests look at one specific waste product, called blood urea nitrogen (BUN), as an indicator for the overall level of waste products in your system. For more information about these measurements, see the NIDDK fact sheet Hemodialysis Dose and Adequacy.

Your kidneys do much more than remove wastes and extra fluid. They also make hormones and balance chemicals in your system. When your kidneys stop working, you may have problems with anemia and conditions that affect your bones, nerves, and skin. Some of the more common conditions caused by kidney failure are extreme tiredness, bone problems, joint problems, itching, and "restless legs." Restless legs will keep you awake as you feel them twitching and jumping.

Anemia and Erythropoietin (EPO)

Anemia is a condition in which the volume of red blood cells is low. Red blood cells carry oxygen to cells throughout the body. Without oxygen, cells can't use the energy from food, so someone with anemia may tire easily and look pale. Anemia can also contribute to heart problems.
Anemia is common in people with kidney disease because the kidneys produce the hormone erythropoietin, or EPO, which stimulates the bone marrow to produce red blood cells. Diseased kidneys often don't make enough EPO, and so the bone marrow makes fewer red blood cells. EPO is available commercially and is commonly given to patients on dialysis.
For more information about the causes of and treatments for anemia in kidney failure, see the NIDDK fact sheet Anemia in Kidney Disease and Dialysis.

Renal Osteodystrophy

The term "renal" describes things related to the kidneys. Renal osteodystrophy, or bone disease of kidney failure, affects 90 percent of dialysis patients. It causes bones to become thin and weak or formed incorrectly and affects both children and adults. Symptoms can be seen in growing children with kidney disease even before they start dialysis. Older patients and women who have gone through menopause are at greater risk for this disease.
For more information about the causes of this bone disease and its treatment in dialysis patients, see the NIDDK fact sheet Renal Osteodystrophy.

Itching (Pruritus)

Many people treated with hemodialysis complain of itchy skin, which is often worse during or just after treatment. Itching is common even in people who don't have kidney disease; in kidney failure, however, itching can be made worse by wastes in the bloodstream that current dialyzer membranes can't remove from the blood.
The problem can also be related to high levels of parathyroid hormone (PTH). Some people have found dramatic relief after having their parathyroid glands removed. The four parathyroid glands sit on the outer surface of the thyroid gland, which is located on the windpipe in the base of your neck, just above the collarbone. The parathyroid glands help control the levels of calcium and phosphorus in the blood.
But a cure for itching that works for everyone has not been found. Phosphate binders seem to help some people; these medications act like sponges to soak up, or bind, phosphorus while it is in the stomach. Others find relief after exposure to ultraviolet light. Still others improve with EPO shots. A few antihistamines (Benadryl, Atarax, Vistaril) have been found to help; also, capsaicin cream applied to the skin may relieve itching by deadening nerve impulses. In any case, taking care of dry skin is important. Applying creams with lanolin or camphor may help.

Sleep Disorders

Patients on dialysis often have insomnia, and some people have a specific problem called the sleep apnea syndrome, which is often signaled by snoring and breaks in snoring. Episodes of apnea are actually breaks in breathing during sleep. Over time, these sleep disturbances can lead to "day-night reversal" (insomnia at night, sleepiness during the day), headache, depression, and decreased alertness. The apnea may be related to the effects of advanced kidney failure on the control of breathing. Treatments that work with people who have sleep apnea, whether they have kidney failure or not, include losing weight, changing sleeping position, and wearing a mask that gently pumps air continuously into the nose (nasal continuous positive airway pressure, or CPAP).
Many people on dialysis have trouble sleeping at night because of aching, uncomfortable, jittery, or "restless" legs. You may feel a strong impulse to kick or thrash your legs. Kicking may occur during sleep and disturb a bed partner throughout the night. The causes of restless legs may include nerve damage or chemical imbalances.
Moderate exercise during the day may help, but exercising a few hours before bedtime can make it worse. People with restless leg syndrome should reduce or avoid caffeine, alcohol, and tobacco; some people also find relief with massages or warm baths. A class of drugs called benzodiazepines, often used to treat insomnia or anxiety, may help as well. These prescription drugs include Klonopin, Librium, Valium, and Halcion. A newer and sometimes more effective therapy is levodopa (Sinemet), a drug used to treat Parkinson's disease.
Sleep disorders may seem unimportant, but they can impair your quality of life. Don't hesitate to raise these problems with your nurse, doctor, or social worker.

Amyloidosis

Dialysis-related amyloidosis (DRA) is common in people who have been on dialysis for more than 5 years. DRA develops when proteins in the blood deposit on joints and tendons, causing pain, stiffness, and fluid in the joints, as is the case with arthritis. Working kidneys filter out these proteins, but dialysis filters are not as effective. For more information, see the NIDDK fact sheet Amyloidosis and Kidney Disease.

How Diet Can Help

Eating the right foods can help improve your dialysis and your health. Your clinic has a dietitian to help you plan meals. Follow the dietitian's advice closely to get the most from your hemodialysis treatments. Here are a few general guidelines.
  • Fluids. Your dietitian will help you determine how much fluid to drink each day. Extra fluid can raise your blood pressure, make your heart work harder, and increase the stress of dialysis treatments. Remember that many foods—such as soup, ice cream, and fruits—contain plenty of water. Ask your dietitian for tips on controlling your thirst.
  • Potassium. The mineral potassium is found in many foods, especially fruits and vegetables. Potassium affects how steadily your heart beats, so eating foods with too much of it can be very dangerous to your heart. To control potassium levels in your blood, avoid foods like oranges, bananas, tomatoes, potatoes, and dried fruits. You can remove some of the potassium from potatoes and other vegetables by peeling and soaking them in a large container of water for several hours, then cooking them in fresh water.
    Potatoes soaking in water.
    You can remove some potassium from potatoes by soaking them in water.
  • Phosphorus. The mineral phosphorus can weaken your bones and make your skin itch if you consume too much. Control of phosphorus may be even more important than calcium itself in preventing bone disease and related complications. Foods like milk and cheese, dried beans, peas, colas, nuts, and peanut butter are high in phosphorus and should be avoided. You'll probably need to take a phosphate binder with your food to control the phosphorus in your blood between dialysis sessions.
  • Salt (sodium chloride). Most canned foods and frozen dinners contain high amounts of sodium. Too much of it makes you thirsty, and when you drink more fluid, your heart has to work harder to pump the fluid through your body. Over time, this can cause high blood pressure and congestive heart failure. Try to eat fresh foods that are naturally low in sodium, and look for products labeled "low sodium."
  • Protein. Before you were on dialysis, your doctor may have told you to follow a low-protein diet to preserve kidney function. But now you have different nutritional priorities. Most people on dialysis are encouraged to eat as much high-quality protein as they can. Protein helps you keep muscle and repair tissue, but protein breaks down into urea (blood urea nitrogen, or BUN) in your body. Some sources of protein, called high-quality proteins, produce less waste than others. High-quality proteins come from meat, fish, poultry, and eggs. Getting most of your protein from these sources can reduce the amount of urea in your blood.
  • Calories. Calories provide your body with energy. Some people on dialysis need to gain weight. You may need to find ways to add calories to your diet. Vegetable oils—like olive, canola, and safflower oils—are good sources of calories and do not contribute to problems controlling your cholesterol. Hard candy, sugar, honey, jam, and jelly also provide calories and energy. If you have diabetes, however, be very careful about eating sweets. A dietitian's guidance is especially important for people with diabetes.
  • Supplements. Vitamins and minerals may be missing from your diet because you have to avoid so many foods. Dialysis also removes some vitamins from your body. Your doctor may prescribe a vitamin and mineral supplement designed specifically for people with kidney failure. Take your prescribed supplement after treatment on the days you have hemodialysis. Never take vitamins that you can buy off the store shelf, since they may contain vitamins or minerals that are harmful to you.
You can also ask your dietitian for recipes and titles of cookbooks for patients with kidney disease. Following the restrictions of a diet for kidney disease might be hard at first, but with a little creativity, you can make tasty and satisfying meals. For more information, see the NIDDK booklet Eat Right to Feel Right on Hemodialysis.

Financial Issues

Treatment for kidney failure is expensive, but Federal health insurance plans pay much of the cost, usually up to 80 percent. Often, private insurance or State programs pay the rest. Your social worker can help you locate resources for financial assistance. For more information, see the NIDDK fact sheet Financial Help for Treatment of Kidney Failure.

Hope through Research

The NIDDK, through its Division of Kidney, Urologic, and Hematologic Diseases, supports several programs and studies devoted to improving treatment for patients with progressive kidney disease and permanent kidney failure, including patients on hemodialysis.
  • The End-Stage Renal Disease Program promotes research to reduce medical problems from bone, blood, nervous system, metabolic, gastrointestinal, cardiovascular, and endocrine abnormalities in kidney failure and to improve the effectiveness of dialysis and transplantation. The research focuses on evaluating different hemodialysis schedules and on finding the most useful information for measuring dialysis adequacy. The program also seeks to increase kidney graft and patient survival and to maximize quality of life.
  • The HEMO Study, completed in 2002, tested the theory that a higher dialysis dose and/or high-flux membranes would reduce patient mortality (death) and morbidity (medical problems). Doctors at 15 medical centers recruited more than 1,800 hemodialysis patients and randomly assigned them to high or standard dialysis doses and high- or low-flux filters. The study found no increase in the health or survival of patients who had a higher dialysis dose, who dialyzed with high-flux filters, or who did both.
  • The U.S. Renal Data System (USRDS) collects, analyzes, and distributes information about the use of dialysis and transplantation to treat kidney failure in the United States. The USRDS is funded directly by the NIDDK in conjunction with the Centers for Medicare & Medicaid Services. The USRDS publishes an Annual Data Report leaving site icon, which identifies the total population of people being treated for kidney failure; reports on incidence, prevalence, death rates, and trends over time; and develops data on the effects of various treatment approaches. The report also helps identify problems and opportunities for more focused special studies of renal research issues.
  • The Hemodialysis Vascular Access Clinical Trials Consortium is conducting a series of multicenter, clinical trials of drug therapies to reduce the failure and complication rate of arteriovenous (AV) grafts and fistulas in hemodialysis. These studies are randomized and placebo ontrolled, which means the studies meet the highest standard for scientific accuracy. AV grafts and fistulas prepare the arteries and veins for regular dialysis. See the NIDDK fact sheet Vascular Access for Hemodialysis for more information. Recently developed drugs to prevent blood clots may be evaluated in these large clinical trials.

Resources

Organizations That Can Help

American Association of Kidney Patients
3505 East Frontage Road
Suite 315
Tampa, FL 33607
Phone: 1–800–749–2257
Email: info@aakp.org
Internet: www.aakp.org click to view disclaimer page
American Kidney Fund
6110 Executive Boulevard
Suite 1010
Rockville, MD 20852
Phone: 1–800–638–8299 or 301–881–3052
Email: helpline@kidneyfund.org
Internet: www.kidneyfund.org click to view disclaimer page
Life Options Rehabilitation Program
c/o Medical Education Institute, Inc.
414 D'Onofrio Drive
Suite 200
Madison, WI 53719
Phone: 1–800–468–7777 or 608–232–2333
Email: lifeoptions@MEIresearch.org
Internet: www.lifeoptions.org click to view disclaimer page
www.kidneyschool.org click to view disclaimer page
National Kidney Foundation, Inc.
30 East 33rd Street
New York, NY 10016
Phone: 1–800–622–9010 or 212–889–2210
Internet: www.kidney.org click to view disclaimer page

Additional Reading

If you would like to learn more about kidney failure and its treatment, you may be interested in reading
AAKP Patient Plan
A series of booklets and newsletters that cover the different phases of learning about kidney failure, choosing a treatment, and adjusting to changes.
American Association of Kidney Patients
3505 East Frontage Road
Suite 315
Tampa, FL 33607
Phone: 1–800–749–2257
Email: info@aakp.org
Internet: www.aakp.org click to view disclaimer page
Getting the Most From Your Treatment series
A series of brochures based on the National Kidney Foundation's Dialysis Outcomes Quality Initiative (NKF-DOQI). Titles include What You Need to Know About Peritoneal Dialysis, What You Need to Know Before Starting Dialysis, and What You Need to Know About Anemia.
Additional patient education brochures include information on diet, work, and exercise.
National Kidney Foundation, Inc.
30 East 33rd Street
New York, NY 10016
Phone: 1–800–622–9010 or 212–889–2210
Internet: www.kidney.org click to view disclaimer page
Medicare Coverage of Kidney Dialysis and Kidney Transplant Services
Publication Number CMS-10128
U.S. Department of Health and Human Services
Centers for Medicare & Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244–1850
Phone: 1–800–MEDICARE (1–800–633–4227)
TDD: 1–877–486–2048
Internet: www.medicare.gov/publications/pubs/pdf/10128.pdf PDF Version (717 KB)*

Newsletters and Magazines

Family Focus Newsletter (published quarterly)
National Kidney Foundation, Inc.
30 East 33rd Street
New York, NY 10016
Phone: 1–800–622–9010 or 212–889–2210
Internet: www.kidney.org click to view disclaimer page
For Patients Only (published six times a year)
ATTN: Subscription Department
18 East 41st Street
20th Floor
New York, NY 10017–6222
Renalife (published quarterly)
American Association of Kidney Patients
3505 East Frontage Road
Suite 315
Tampa, FL 33607
Phone: 1–800–749–2257
Email: info@aakp.org
Internet: www.aakp.org click to view disclaimer page
The U.S. Government does not endorse or favor any specific commercial product or company. Trade, proprietary, or company names appearing in this document are used only because they are considered necessary in the context of the information provided. If a product is not mentioned, the omission does not mean or imply that the product is unsatisfactory.

Acknowledgments

The NIDDK thanks these dedicated health professionals for their careful review of the original version of this publication.
Richard A. Sherman, M.D.
Robert Wood Johnson Medical School
Richard D. Swartz, M.D.
University of Michigan Health System
Charlie Thomas, A.C.S.W., C.I.S.W.
Samaritan Transplant Services, Phoenix, AZ
The individuals listed here facilitated field testing for this publication. The NIDDK thanks them for their contribution.
Kim Bayer, M.A., R.D., L.D.
BMA Dialysis
Bethesda, MD
Cora Benedicto, R.N.
Clinic Director
Gambro Health Care
N Street Clinic
Washington, DC

What happens if someone stops dialysis?

For many people with kidney failure, dialysis or a kidney transplant enables them to live longer and enjoy their quality of life. However, this may not be the case for everyone and each person has the right to choose how — or even if — they want to receive treatment for chronic kidney disease. Without life-sustaining dialysis or a kidney transplant, once a person with kidney disease reaches Stage 5 (end stage renal disease (ESRD)), toxins build up in the body and death usually comes within a few weeks.
The decision to stop treatment should be an informed and voluntary choice. Experts recommend that patients talk with their physicians and perhaps a social worker or therapist to fully understand their choices and know what to expect. It’s important to rule out depression or other issues that may affect how the patient feels about life-sustaining treatment. Ideally, the physician-patient relationship encourages shared decision-making. With shared decision-making, the doctor fully informs the patient about treatment options, including stopping (or not starting) dialysis and planning for end-of-life care.
With advance planning, patients who have made the decision to stop treatment can spend their last days how and where they choose — with loved ones or alone at home, in hospice or in the hospital. The patient can also get help with how to tell loved ones about their decision.

Talking to family members about stopping dialysis

Frequently, visitors to the DaVita.com discussion forum who have a family member that wishes to stop treatment will ask, “What will happen once dialysis is stopped?” It is natural for loved ones to be concerned, because without lifesaving treatment death will occur, usually within a few weeks. However, it is the patient’s right to make this decision and sometimes, knowing that death can be pain-free and peaceful for the person with end stage renal disease (ESRD), helps ease family members’ fears.
There are many reasons why someone with ESRD may not want to continue or start dialysis. Some people feel they’ve lived a full life and don’t want to bother with additional surgery and treatments. For dialysis, a person will need an access placement and hemodialysis three times a week, or peritoneal dialysis every day. Some people who are already on dialysis may feel that the treatment is no longer maintaining or improving their health because they are unable to live independently or enjoy a certain quality of life.
Studies have shown that people most likely to withdraw from dialysis are older and living in nursing homes. They often have health problems in addition to kidney disease, and suffer more severe pain. They usually have physical limitations that restrict normal daily activities.
If a loved one decides to stop dialysis, it’s important that family members try to understand and respect that decision. The patient’s treatment team should be available to make sure the patient and family members understand the effects of the decision.

Preparing for stopping dialysis — Advance Directives and Hospice

While talking about death and dying can be difficult, most families find it is a relief to have a plan in place for when the time does come. Planning for care and respecting the wishes of the patient make end-of-life decisions easier. An Advance Directive can help family members know what the patient wants regarding end-of-life care so the family doesn’t have to make those decisions for the patient. An Advance Directive is a legal document that spells out a person’s wishes regarding future crisis care. All adults should have an Advanced Directive. Having an Advance Directive lets everyone know what to do if you become unable to communicate those wishes.
There are two basic kinds of Advance Directives: living wills and health care proxies (durable power of attorney for health care decisions). You’ll want to make sure everyone involved with your care has a copy of your Advance Directive. State laws determine how people can direct their care. An attorney can determine the legally appropriate form for your state. If you have questions about an Advance Directive, please talk with your physician or an attorney.
Patients who stop dialysis receive what’s called palliative care. Palliative care, also called comfort care, focuses on helping patients stay as comfortable as possible during the time remaining. When someone has made the decision to stop dialysis, hospice can be referred by their physician. Hospice, a form of palliative care, provides pain relief and symptom control and can take place in the patient’s home, at a hospice facility or in the hospital. Hospice is a service that can be of help to end stage renal disease patients and their family members; however, it is used by less than half of those who withdraw from dialysis. For more information on hospice, talk to your physician.

What to expect once dialysis is stopped

Without dialysis, toxins build up in the blood, causing a condition called uremia. The patient will receive whatever medicines are necessary to manage symptoms of uremia and other medical conditions. Depending on how quickly the toxins build up, death usually follows anywhere from a few days to several weeks.
As the toxins build up, a person may experience certain physical and emotional changes. The body has a normal, natural way to prepare itself to stop. Understanding what’s happening can help the patient’s friends and family members prepare to help their loved one. In the final days, the body starts to shut down. In most instances, the shut-down is an orderly series of physical changes which may include:
  • Loss of appetite and fluid overload
  • Sleeping most of the day  
  • Restlessness
  • Visions of people who don’t exist
  • Disorientation, confusion and failure to recognize familiar faces
  • Changes in breathing (Normal breathing patterns may become shallow, irregular, fast or extremely slow. There may be periods of breathing that sound like panting. Exhaling may create a moan-like sound. This is not distress, but the sound of air passing over the vocal cords. Changed breathing patterns indicate decreased circulation in the internal organs and buildup of waste products. Elevating the head and/or turning onto the side may increase comfort.)
  • Congestion (If saliva and mucus collect in the back of the throat, you may hear a gurgling sound. While the sound can be distressing to hear, it’s a normal response to a fluid imbalance and the inability to cough up normal secretions. It may help to raise the head. Turning the head to the side allows gravity to drain the congestion.)
  • Changes in color and skin temperature
Patients who choose to stop or not start dialysis are not required to eat or take in fluids. In most cases, a patient is allowed to eat or drink if they want to, but forcing fluids or nutrition is not recommended.
Medicines can be given for pain, anxiety, agitation or congestion. However, other medicines are often stopped when a person decides to quit dialysis treatments, since treating the chronic medical conditions is no longer a priority.
As the body’s systems shut down, a person slips into unconsciousness and the heart stops beating.
Most people who pass away from kidney failure have what family members and caregivers describe as a “good death.” A study reported that patients who discontinued dialysis described a good death as pain-free, peaceful and brief. The patients’ families echoed this sentiment, adding a good death included having loved ones present at the end.

Treasure the time you have

When the dialysis patient and their loved ones are prepared for the final days, the time remaining can be spent in companionship, reminiscing, laughing and crying. Many people never have the opportunity for closure, many kidney failure patients and their loved ones say they are grateful for the opportunity to express affection and say goodbye.  
External links

KIDNEY DIALYSIS AND TRAVEL

If well enough, with careful planning, a holiday can boost your confidence and well being. However, when you live with any chronic disease, there are major road blocks to negotiate before you can travel sensibly.
  • Ensure you have funds for costs for health emergency treatment and medicine. Dialysis can be expensive!
  • Do not organise dialysis without talking with your health team about how travel may affect your health. 
Home dialysis on the road
Quick reference guide to help planning - Home dialysis on the road>

Booking travel dialysis arrangements in Australia
With increasing demand, lack of spare dialysis chairs is a problem (capacity). Dialysis sessions should always be booked well in advance and confirmed before travel. You must be prepared to be flexible.
Private temporary dialysis in Australia
Capacity is a problem even in private units. If available, a dialysis session is approx cost: $450 to $650 per treatment (Sth Australia), eastern states $800 to $900 per treatment, depending on location. Strict minimum 1 month notice.
Medically required medication
Many countries, including Australia only allow medically required medication to cover you for a maximum of 3 months at maximum dose. Ensure your doctor updates your treatment letter with current health and medication list for Customs. Your dialysis unit will also give you an introduction letter - Travel overseas with PBS medication

TIPS FOR AUSSIES OVERSEAS - TRAVEL WITH KIDNEY DISEASE


Obtaining haemodialysis in other countries is possible - standards of care may differ to Australian standards. Some global holiday dialysis groups specialise in this service and offer quality service guaranteed - but charge for the service. Ask what is covered in the fees and get a firm quote.
Travel on Peritoneal Dialysis (PD) is simpler - with careful planning dialysis supplies can be delivered to a destination, if arranged in advance. Ask your health team if they can arrange contacts for back-up medical care, essential in case of ill health. Peritoneal Dialysis Travel 'Tool Box' Nephrology Nursing Journal. Bobbie Knotek, Laurie Biel USA
Travel when waiting for a kidney transplant - consult your doctor and Transplant Coordinator to decide if you will be able to return in time if a kidney becomes available. You are unlikely to receive travel insurance whilst on the transplant waiting list, or for some time post transplant. Your health must be confirmed as stable.
Travel anywhere, when you have a chronic disease - when making hotel reservations - remember to request ground floor room or handicapped-accessible room, if stairs or walking distances are a problem.
When making travel or flight bookings - contact a Disability or Special Assistance Co-ordinator - if booking via a travel agent advise special needs - specific diet, accessible rooms and assistance to change planes. If you need assistance boarding a plane or train, inform staff when you check in. An agent can also advise the best method for safe transport of dialysis supplies to foreign countries.

Aussies with kidney disease wanting to travel
Australian Dialysis Unit Guide (DUG)  Find a particular Dialysis Unit in Australia
BigDandMe - Holiday Dialysis Blog  Tales from an Aussie and his Holiday Dialysis adventures
Dialysis Escape Line: Australia PD & haemo dialysis nurses on all cruises
- call 08 8227 0181 or Wayne Cooper 0448 588 880
Dalysis Abroad
International escorted tours on dialysis - 08 8362 6657
NephroCare Australia - Fresenius Travel and dialysis Fresenius - Dialysis Clinic Finder
RenalInfo Support and Resources (Baxter) all countries including Australia

Australian Dialysis Units who may offer travel on dialysis places

State Booking ahead essential - no guarantee space is available - click links in red below
Session fees apply for private units listed
New South
Wales

EnableNSW - The Away From Home Haemodialysis Program>
Eligible haemodialysis patients access dialysis services at no cost when traveling away from home - education, work, holidays. Subject to availability & funding. Eligible patients may access up to 3 sessions per year at participating private renal unit (N/A Tasmania) away from usual place of residence. For NSW residents only!

Newcastle: Wansey Dialysis Centre - John Hunter Hospital NSW>
Call Team Leader, High Dependency 02 4943 9635 or send written request to:
Wansey Dialysis Centre, 1A Dudley Road Charlestown NSW 2290

Northern
Territory
Alice Springs Renal Unit> (public) staff try to keep shift for travelers - advance notice essential
Visit MacDonnell Ranges or Standley Chasm - call Dialysis Unit on 08 8951 6750

Alice Springs - Dialysis Unit> (private - dialysis fees apply) Fresenius Medical Care

Queensland
Townsville Renal Unit> private/public units have capacity problems but worth trying - call 07 4433 2650

Caloundra Private Renal Unit> (dialysis fees apply) read brochure then call 07 5492 0215

Tasmania
Launceston Community Health Centre Renal Unit>
Call 03 6336 5132 - dialysis sessions North/ North West Tasmania residents - advance notice essential


Victoria
Dialysis & Transplant Association of Victoria D.A.T.A. datavic.org/index.html
Members may access low cost holiday homes to enable family holidays with dialysis

Kyabram & District Health Services
Provide holiday dialysis: *Tues *Thurs *Sat (morning) call Natalie Sheehan 03 5857 0217

Lorne Satellite Dialysis Unit - Satellite unit of Geelong Hospital (Barwon Health)
M-W-F am sessions, Christmas to February, dialysis unit open 2 morning sessions (M-Sat) but no renal physician on site. Enquiries reception@swarh.vic.gov.au or call 03 5289 4300 - see travel brochure>


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We would all love to hear about your path with kidney disease, particularly any travel on dialysis adventures you may have enjoyed, or post transplant.

Email Cassandra Bradshaw, the Editor of Kidney Community News at cassandra.bradshaw@kidney.org.au with suggestions for articles.

Call 1800 454 363 - our staff will help you to subscribe.


KIDNEY HEALTH AUSTRALIA - DIALYSIS AND TRAVEL PROGRAMS

Big Red Kidney Mobile Dialysis Bus - bookings now open!
Holiday dialysis at Victorian holiday spots for up to 6 weeks at a time, parked at local caravan parks (see current session detail below). Dialysis patients need holiday accommodation, but can book to dialyse on our Big Red Kidney Bus, to enjoy a real holiday with family and friends. We need your help to develop the project nationally. Find out more about this program at: Big Red Kidney Bus>

  • The Grampians: 23 March to 26 April 2015  Vacancies at 9 January 2015>
    Big4 Grampians Parkgate Resort, 2372 Grampians Road, Halls Gap
    If you wish to book a cabin - 1800 810 781 (freecall) or stay@parkgateresort.com.au
    Big Red Kidney Bus Offer:
    stay 7 nights-pay 5 or stay 5 nights-pay 4


  • Phillip Island: 5 January to 1 February 2015 Bookings closed
    Big4 Phillip Island Caravan Park, 24 Old Bridge Drive, Newhaven
    Book a cabin - 03 5956 7227 (freecall) or info@phillipislandcpk.com

Travel Freedom on Dialysis - Campervan Program
Exciting initiative to provide respite or holiday dialysis options for Aussies living with kidney disease. Each Kidney Campervan fitted with dialysis machines (see prototype) initially available in Queensland. Future plans are to expand program nationally. See media>
The Wade family made a generous startup $50,000 donation to dialysis campervan program. Every dollar raised helps put a fleet on the road. To raise more funds the Vintage Adventurer drives his 1930 Model ‘A’ Ford to remote locations - the intrepid team recently drove across America from East to West on Route 66. For more visit Vintage Adventure>


TRAVEL HEALTH INSURANCE WHEN YOU HAVE KIDNEY DISEASE


When you have any chronic disease be realistic about the likelihood of buying travel insurance for a pre-existing condition. Aussies should consider locations in Australia as better options to long distance travel overseas. Don’t book travel until travel health insurance cover is secure and ensure you budget for any emergency.

Will you qualify for travel health insurance? If you had private health insurance cover when you developed a chronic health condition, you may get travel cover from your health insurance company. If you had a complex path to kidney failure, are experiencing dialysis issues, or have multiple health conditions, you may not find a travel insurer.

Consider basic travel insurance to cover emergencies.  Pay for travel with a credit card which offers some level of travel insurance, or consider general travel insurance via a union, bank or even Superannuation. Ask questions about travel insurance especially with multiple pre-existing health conditions. Most travel cover will exclude existing chronic conditions. Some level of travel insurance is strongly advised. We recommend you use an insurance broker to find travel insurance to save time.

As a guide: travel insurance MAY be granted if you have kidney disease, have had a transplant at least six months old; there must never have been a rejection or infection and your overall health must be stable. Travel insurance will NOT usually cover anyone on a transplant waiting list or with a complex health history.

Travel insurance agencies who are known to offer cover to people post transplant
An applicant is assessed on individual health - if it does not meet the criteria you are likely to be refused.
*Australia Post Travel Insurance (extra premium)  *Allianz Australia -Travel Insurance  *Cover-More Travel Scene  *Chartis Travel  *Columbus Direct  *Travel Scene Insurance  *Worldcare Travel Insurance Australia or compare travel cover and conditions at www.comparethemarket.com.au
Useful reading:  Getting help when traveling overseas  *  Importance of travel Insurance
Important contact information for Aussie travelers overseas
Australian Department of Foreign Affairs & Trade Australians traveling overseas may access a 24-hour Consular Emergency Centre - Consular advice for emergencies: call 1300 555 135 within Australia or +61 2 6261 3305 from outside Australia. Important: Australians traveling should register with Smart Traveller to receive up to date travel advice and receive consular assistance quickly - especially if you have a chronic health problem.
Private Health Insurance - Ombudsman 1800 640 695
Private Health (Australian Government site) compare health insurance policies 1300 737 299
Travel Doctor Australian Traveler's Medical & Vaccination Centre Travel Kits Medical

INTERNATIONAL TRAVEL ON DIALYSIS AND POST TRANSPLANT


Be aware delays can be expected if a bed in a public hospital isn’t available - a global problem. Even if eligible for free treatment, you may prefer to have control over treatment using travel health cover.
Reciprocal Health Care Agreements (RHCA)
Countries signatories: New Zealand, United Kingdom, Republic of Ireland, Sweden, Netherlands, Finland, Italy, Belgium, Malta, Slovenia and Norway. More detail on individual country benefits here>

RHCA are not designed to replace private travel health insurance for overseas travel as not all treatment is covered. Each agreement is different and varies in benefits, duration and eligibility for medically necessary treatment - a complex area of travel health cover, especially if you have multiple chronic health conditions and there are limits.

  • Australians overseas: may receive help with the cost of essential medical treatment
  • Visitors to Australia: residents of RHCA countries listed above can get essential medical treatments
Exceptions where no cover is available are: pre-arranged or elective treatment not immediately necessary, ambulance cover and paramedical services, dental care, medical evacuation to a home country, funerals, treatment in private hospital, or as a private patient in a public hospital.
An Australian RHCA may cover medically necessary treatment INCLUDING dialysis for eligible visitors from: Netherlands - New Zealand - United Kingdom but there are limits.
To receive medically necessary treatment for any ill-health or injury whilst visiting an RHCA country, you must provide local health authorities with:
  • Australian passport or other passport which shows you are a permanent Australian resident
  • valid Medicare card - check expiry date to ensure you are covered until you return to Australia
  • if known treatment is expected, advise the relevant medical staff that you wish to be treated under an RHCA with Australia, to establish dialysis capacity. Be aware co-payments apply - there are limits.
Important contact information

Reciprocal Health Care Agreements
Travel with PBS Medicine 1800 500 147 - Department of Human Services 132 290
Medicare: Australians traveling overseas and Visitors to Australia 
Health Insurance Consultants
- independent review of RHCA
Medicare 132 011 - or to locate a Medicare office
TTY 1800 552 152 for hearing/speech impaired - 131 450 interpreting service

VISITORS TO AUSTRALIA - ON DIALYSIS OR POST TRANSPLANT

Eligible RHCA country residents visiting Australia are entitled to medically necessary treatment for ill-health or injury whilst in Australia, but this does not include treatment considered ongoing, elective or in a private hospital. Visitors to Australia - can expect these entitlements for treatment under RHCA>
  • free treatment as a public in-patient or outpatient in a public hospital
  • subsidised medicine under Pharmaceutical Benefits Scheme (PBS)
  • Medicare benefits to cover some out-of-hospital medical treatment provided by doctors through surgeries and community health centres - be aware that a co-payment usually applies.
RHCA eligible visitors to Australia may be entitled to use dialysis services in Australia as a public patient
The number of dialysis treatments available depends on availability of resources of a treating hospital. Australia has agreed to provide RHCA visitors with free dialysis for the lesser of: either a maximum period of 4 weeks (covering all service sites) OR a maximum 12 sessions, within a 12 month period from date of first treatment.However, it is important to note these points:
  • Dialysis in Medicare funded dialysis units (public) for eligible patients is based on clinical need.
  • The ability of the Australian health system to fund eligible overseas patients must not interfere with the physical, clinical and/or financial capacity of any Area Health Service to meet clinical priorities for Australian residents.
  • In reality, travelers needing dialysis may have difficulty in finding spare capacity in public Australian Dialysis Units. Dialysis is limited to one RHCA patient at each site, subject to staffing and resources - each state may impose their own limits on free treatments offered.
Dialysis is NOT covered under these RHCA agreements - emergency treatment only
Visitors from New Zealand and Republic of Ireland should present their passport to Australian hospital clerical staff to be eligible for cover under Medicare. Access to public health care in Australia for visitors under an RHCA is restricted to a person ordinarily resident in the Republic of Ireland and temporarily in Australia. Such visitors will not be issued with Medicare cards.
Visitors from Finland - Norway - Sweden must take your passport and travel visa to a Medicare office to be registered and given a Medicare number. This card and number must be presented to hospital clerical staff to prove Medicare eligibility. Registration may be done during or after your hospital stay. If you do not register you may be liable for the costs of treatment.
Visitors from Belgium - Slovenia - Netherlands present your current European Health Card and passport.

Residents of Malta and Italy - only covered for six months from date of arrival and must provide passport.
Considering skilled work in Australia? You and your family must be healthy - strict health criteria!
Overseas Skilled Workers: health requirements: Australian Immigration Refer to Fact Sheet 22
Translated resources - Australian Immigration Department

TRAVEL HEALTH AND KIDNEY DISEASE

When on holiday your health care team must be able to contact you, especially if on the transplant waiting list. Give your health team a detailed travel itinerary with contact details and remember to advise dialysis unit staff of any changes you make to your travel itinerary or plans. Be aware, blood tests are compulsory for most units anywhere in the world - allow time to have the tests done and receive results. Check if vaccines are needed in countries where you travel - some vaccines are not recommended for dialysis patients - note: transplant patients need to be especially careful when having vaccines.
  • Keep an up to date treatment letter from your doctor with you at all times (copy in checked luggage) summarising your health, recent lab results and medication prescribed and why. You may need to provide this letter to Customs - also essential if you need to consult a doctor away from home. Keep scanned e-copies in an email (Yahoo, Hotmail) for access in emergencies. Your doctor can provide a copy in an emergency, but not ideal if you need urgent treatment or medication.

  • Check that medications you need are not considered illegal in countries you may travel to, especially pain killers or opiates. Erythropoietin is banned for sports persons - so ensure if you need this drug, it is noted in your treatment letter - otherwise you may be fined, face lengthy delays in Customs, or worse!
    Prohibited list; Therapeutic use exemptions
     World Anti-Doping Agency

  • Travel with at least a 3 day reserve of supplies - to cover you for flight delays, unexpected scheduling or shipment delays. Bags can also go astray - they may arrive on the next flight, but to be safe always pack medications in a carry-on bag, never in checked luggage.

  • Planes don't have fridges for personal use - if you have a drug which must be kept cool, ask your pharmacist how to pack it for travel. Check if your hotel offers a room fridge as some countries do not - they may suggest options. Consider packing medications in a thermo-bag with re-usable freezer packs or use a wide-necked thermos chilled in advance. Make sure you allow time for transfers and delays when calculating the total length of your travel to avoid times when medication may be unrefrigerated.

  • Ensure you arrange a clean space in advance to do exchanges and store supplies. Carry two universal power connectors, one in personal bag and one in checked luggage, in case one is lost in transit.

  • If you bring syringes, you must bring the drug you inject, like insulin etc (some countries including Australia require a special license for certain drugs). There is no limit to how many unused empty syringes you can travel with, but you must display a professionally printed label on the associated medication which clearly identifies it. On your return trip ensure you declare any drugs you were given or prescribed. A treatment letter listing medication may be requested by Customs when returning home.

  • If you travel by plane or train, make arrangements for special meals (e.g. low-salt, low-fat, diabetic). If diabetic, carry glucose tablets and snacks such as low-potassium juice to treat low blood sugar. Travel with lunch or nutrition supplement, in case of delays. Managing diabetes can be simpler by having a travel pack of insulin, syringes and blood glucose monitoring unit in your hand luggage.

  • Pack an emergency supply of bandages, pain killers, insect-bite ointment and anti-diarrhoea pills. Ask your health team for names of over-the-counter drugs you could use if needed. Avoid over-exposure to sun - take a high-factor sunscreen and use it - sun protection is very important for transplant patients.

  • Watch what you eat and drink. Talk to your dietitian about foods to avoid overseas. Don't risk drinking local water, use bottled water only, including water for brushing teeth. Avoid salads and ice cubes unless prepared yourself using bottled water. Avoid any foods from street vendors, especially ice cream.

INTERNATIONAL TRAVEL LOCATIONS - OFFERING DIALYSIS

Be aware that the quality, standards & charges may vary greatly in cities overseas

Asia Pacific Nephrocare - Global Dialysis Clinic Finder
Dalysis Abroad Australian escorted tours with quality dialysis - Japan, Bali & Italy
Dialysis at Sea - USA Cruise with medical and dialysis needs managed by trained medical professionals on board - USA, Alaska, Hawaii, Mexico, Canada, Bermuda
Diaverum Holiday Dialysis - many global locations
Eurodial Global dialysis group - guarantee sessions with reputable private dialysis centres
eNeph Clinicfinder for list of global Dialysis Units.
Dialysis Freedomrun in conjunction with British Kidney Patients Association See list of all UK dialysis units
Fresenius Medical Care: Travel & Dialysis Internatiional Locate holiday dialysis unit - global
Fresenius Holiday Dialysis - global Private dialysis unit finder
Global Dialysis Resource for travel on dialysis patients
Holiday Dialysis International - dialysis cruises online booking/query form 
Holiday Dialysis - Dr Berger  UK and European dialysis travel eligible for subsidised dialysis at these centres. For quote for treatment/availability info@dialysis-travel.com
International Federation of Kidney Foundations - Member Inventory Global members give valuable information on local availability of dialysis, quality of care and relevant charges
The List: Dialysis & Transplantation Global guide to travel and dialysis - extensive resource
National Kidney Foundation UK Dialysis Centres worldwide and support information


INTERNATIONAL DIALYSIS PROVIDERS FOR TRAVEL ON DIALYSIS


BALI - INDONESIA Nusa Dua
BIMC Hospital Dialysis Unit  Upgrades to facilities ensure high Australian standards - 4 star Hotel nearby. Contact unit well before travel - e-brochure US$249 per session. PD support - Australian staff speak: English, German, French, Japanese & Indonesian (9-5, 6 days no Sunday)
Jo Skala - Haemodialysis Coordinator - Call +62 361 300 0911
jo@bimcbali.com * dialysiscentre@bimcbali.com or nusadua@bimcbali.com
CANADA
Traveling Dialysis RV Associates - water purification system No training given - patient must be trained with this type of unit.
CANARY ISLANDS
Club Haemodialysis Fresenius Private Travel info@dialysecanarias.com
Bulgaria, Croatia, Czech Republic, Egypt, Greece-Crete, Hungary, Italy, Poland, Spain, Tunisia, Turkey Holiday Dialysis: by Dr Berger for extensive travel service for dialysis patients
Cyprus Dialysis via Cyprus Health Service Promotion Board - Cyprus Holiday Dialysis Unit
Greece and other countries Treatment Abroad: Dialysis holidays
Greece - Rhodes
Helionephro Dialysis (approx 250 euros a treatment) Helionephro Sun Dialysis Unit
Apollo Bramwell Hospital holiday dialysis - get quote and confirm booking before travel.
PACIFIC REGION
Fiji Islands: Colonial War Memorial Hospital in Suva (east coast - 200 km from west coast holiday spots) Session approx $500 Fiji. Call +679 310 0020 or fijidialysiscentre@gmail.com
Western Samoa: +679 310 0020 Motootua Hospital in Apia - very important to check with staff on status of current dialysis care, access to care by qualified doctors during dialysis and availability.
UNITED ARAB EMIRATES - Dubai
Zulekha Hospital - Holiday Dialysis Most countries (inc Australia) are offered free Travel Visas
UNITED KINGDOM
Dialysis Freedom - dialysis holiday specialists
Dialysis Holidays UK
Private Dialysis UK Find a holiday/ private dialysis clinic - get quote for anticipated treatment
Renal Assocation of UK - Lists over 70 main Dialysis Units Sort by map or postcode
Haemodialysis in Edinburgh Scotland
UNITED STATES OF AMERICA
Dialysis Units in the USA
Dialysisfinder.com Travel links Book your dialysis sessions early
NKF (USA) Holiday Pages
Traveling on dialysis advice DaVita USA - hints for travel on dialysis and more
WhereDialysis.com  Find dialysis facilities in the USA