End-Stage Renal Disease: Choosing a treatment that is right for you

Ari Kostadaras, M.D.


CONTENTS


  • Introduction
  • When Your Kidneys Fail
  • Treatment Choices

          

Introduction

This etext is for people whose kidneys fail to work. This condition is called end-stage renal disease (ESRD).

Today, there are new and better treatments for ESRD that replace the work of healthy kidneys. By learning about your treatment choices, you can work with your doctor to pick the one that's best for you. No matter which type of treatment you choose, there will be some changes in your life. But with the help of your health care team, family, and friends, you may be able to lead a full, active life.

This etext describes the choices for treatment: hemodialysis, peritoneal dialysis, and kidney transplantation. It gives the pros and cons of each. It also discusses diet and paying for treatment. It gives tips for working with your doctor, nurses, and others who make up your health care team. It provides a list of groups that offer information and services to kidney patients. It also lists magazines, books, and brochures that you can read for more information about treatment.

You and your doctor will work together to choose a treatment that's best for you. This etext can help you make that choice.

When Your Kidneys Fail

Healthy kidneys clean the blood by filtering out extra water and wastes. They also make hormones that keep your bones strong and blood healthy. When both of your kidneys fail, your body holds fluid. Your blood pressure rises. Harmful wastes build up in your body. Your body doesn't make enough red blood cells. When this happens, you need treatment to replace the work of your failed kidneys.


Treatment Choice:

Hemodialysis:

Hemodialysis is a procedure that cleans and filters your blood. It rids your body of harmful wastes and extra salt and fluids. It also controls blood pressure and helps your body keep the proper balance of chemicals such as potassium, sodium, and chloride.

Hemodialysis uses a dialyzer, or special filter, to clean your blood. The dialyzer connects to a machine. During treatment, your blood travels through tubes into the dialyzer. The dialyzer filters out wastes and extra fluids. Then the newly cleaned blood flows through another set of tubes and back into your body.

Before your first treatment, an access to your bloodstream must be made. The access provides a way for blood to be carried from your body to the dialysis machine and then back into your body. The access can be internal (inside the body -- usually under your skin) or external (outside the body).

Hemodialysis can be done at home or at a center. At a center, nurses or trained technicians perform the treatment. At home, you perform hemodialysis with the help of a partner, usually a family member or friend. If you decide to do home dialysis, you and your partner will receive special training.

Hemodialysis usually is done three times a week. Each treatment lasts from 2 to 4 hours. During treatment, you can read, write, sleep, talk, or watch TV.

Possible Complications. Side effects can be caused by rapid changes in your body's fluid and chemical balance during treatment. Muscle cramps and hypotension are two common side effects. Hypotension, a sudden drop in blood pressure, can make you feel weak, dizzy, or sick to your stomach.

It usually takes a few months to adjust to hemodialysis. You can avoid many of the side effects if you follow the proper diet and take your medicines as directed. You should always report side effects to your doctor. They often can be treated quickly and easily.

Your diet. Hemodialysis and a proper diet help reduce the wastes that build up in your blood. A dietitian can help you plan meals according to your doctor's orders. When choosing foods, you should remember to:

  • Eat balanced amounts of foods high in protein such as meat and chicken. Animal protein is better used by your body than the protein found in vegetables and grains.
  • Watch the amount of potassium you eat. Potassium is a mineral found in salt substitutes, some fruits, vegetables, milk, chocolate, and nuts. Too much or too little potassium can be harmful to your heart.
  • Limit how much you drink. Fluids build up quickly in your body when your kidneys aren't working. Too much fluid makes your tissues swell. It also can cause high blood pressure and heart trouble.
  • Avoid salt. Salty foods make you thirsty and cause your body to hold water.
  • Limit foods such as milk, cheese, nuts, dried beans, and soft drinks. These foods contain the mineral phosphorus. Too much phosphorus in your blood causes calcium to be pulled from your bones. Calcium helps keep bones strong and healthy. To prevent bone problems, your doctor may give you special medicines. You must take these medicines everyday as directed.

Pros and Cons

Each person responds differently to similar situations. What may be a negative factor for one person may be positive for another. However, in general, the following are pros and cons for each type of hemodialysis.

In-Center Hemodialysis

Pros

  • You have trained professionals with you at all times.
  • You can get to know other patients.

Cons

  • Treatments are scheduled by the center.
  • You must travel to the center for treatment.

Home Hemodialysis

Pros

  • You can do it at the hours you choose. (But you still must do it as often as your doctor orders.)
  • You don't have to travel to a center.
  • You gain a sense of independence and control over your treatment.

Cons

  • Helping with treatments may be stressful to your family.
  • You need training.
  • You need space for storing the machine and supplies at home.

Questions You May Want To Ask:

  • Is hemodialysis the best treatment choice for me? Why or why not?
  • If I am treated at a center, can I go to the center of my choice?
  • What does hemodialysis feel like? Does it hurt?
  • What is self-care dialysis?
  • How long does it take to learn home hemodialysis? Who will train my partner and me?
  • What kind of blood access is best for me?
  • As a hemodialysis patient, will I be able to keep working? Can I have treatments at night if I plan to keep working?
  • How much should I exercise?
  • Who will be on my health care team? How can they help me?
  • Who can I talk with about sexuality, family problems, or money concerns?
  • How/where can I talk to other people who have faced this decision?
  • Write Other Questions You May Have Here:

Treatment Choice:

Peritoneal Dialysis:

Peritoneal dialysis is another procedure that replaces the work of your kidneys. It removes extra water, wastes, and chemicals from your body. This type of dialysis uses the lining of your abdomen to filter your blood. This lining is called the peritoneal membrane.

A cleansing solution, called dialysate, travels through a special tube into your abdomen. Fluid, wastes, and chemicals pass from tiny blood vessels in the peritoneal membrane into the dialysate. After several hours, the dialysate gets drained from your abdomen, taking the wastes from your blood with it. Then you fill your abdomen with fresh dialysate and the cleaning process begins again.


Before your first treatment, a surgeon places a small, soft tube called a catheter into your abdomen. This catheter always stays there. It helps transport the dialysate to and from your peritoneal membrane.

There are three types of peritoneal dialysis.

1. Continuous Ambulatory Peritoneal Dialysis (CAPD)

CAPD is the most common type of peritoneal dialysis. It needs no machine. It can be done in any clean, well-lit place. With CAPD, your blood is always being cleaned. The dialysate passes from a plastic bag through the catheter and into your abdomen. The dialysate stays in your abdomen with the catheter sealed. After several hours, you drain the solution back into the bag. Then you refill your abdomen with fresh solution through the same catheter. Now the cleaning process begins again. While the solution is in your body, you may fold the empty plastic bag and hide it under your clothes, around your waist, or in a pocket.

2. Continuous Cyclic Peritoneal Dialysis (CCPD)

CCPD is like CAPD except that a machine, which connects to your catheter, automatically fills and drains the dialysate from your abdomen. The machine does this at night while you sleep.

3. Intermittent Peritoneal Dialysis (IPD)

IPD uses the same type of machine as CCPD to add and drain the dialysate. IPD can be done at home, but it's usually done in the hospital. IPD treatments take longer than CCPD.


CAPD is a form of self-treatment. It needs no machine and no partner. However, with IPD and CCPD, you need a machine and the help of a partner (family member, friend, or health professional).

With CAPD, the dialysate stays in your abdomen for about 4 to 6 hours. The process of draining the dialysate and replacing fresh solution takes 30 to 40 minutes. Most people change the solution four times a day.

With CCPD, treatments last from 10 to 12 hours every night.

With IPD, treatments are done several times a week, for a total of 36 to 42 hours per week. Sessions may last up to 24 hours.

Possible Complications. Peritonitis, or infection of the peritoneum, can occur if the opening where the catheter enters your body gets infected. You can also get it if there is a problem connecting or disconnecting the catheter from the bags. Peritonitis can make you feel sick. It can cause a fever and stomach pain.

To avoid peritonitis, you must be careful to follow the procedure exactly. You must know the early signs of peritonitis. Look for reddening or swelling around the catheter. You should also note if your dialysate looks cloudy. It is important to report these signs to your doctor so that the peritonitis can be treated quickly to avoid serious problems.

Your Diet. Diet for peritoneal dialysis is slightly different than diet for hemodialysis.

  • You may be able to have more salt and fluids.
  • You may eat more protein.
  • You may have different potassium restrictions.
  • You may need to cut back on the number of calories you eat. This limitation is because the sugar in the dialysate may cause you to gain weight.

Pros and Cons

There are pros and cons to each type of peritoneal dialysis.

CAPD

Pros

  • You can perform treatment alone.
  • You can do it at times you choose.
  • You can do it in many locations.
  • You don't need a machine.

Cons

  • It disrupts your daily schedule.

CCPD

Pros

  • You can do it at night, mainly while you sleep.
  • You need a machine and help from a partner.

IPD

Pros

  • Health professionals usually perform treatments.

Cons

  • You may need to go to a hospital.
  • It takes a lot of time.
  • You need a machine.

Questions You May Want To Ask:

  • Is peritoneal dialysis the best treatment choice for me? Why or why not? Which type?
  • How long will it take me to learn peritoneal dialysis?
  • What does peritoneal dialysis feel like? Does it hurt?
  • How will peritoneal dialysis affect my blood pressure?
  • How do I know if I have peritonitis? How is peritonitis treated?
  • As a peritoneal dialysis patient, will I be able to continue working?
  • How much should I exercise?
  • Who will be on my health care team? How can they help me?
  • Who can I talk with about sexuality, finances, or family concerns?
  • How/where can I talk to other people who have faced this decision?
  • Write Other Questions You May Have Here:

Dialysis Is Not a Cure

Hemodialysis and peritoneal dialysis are treatments that try to replace your failed kidneys. These treatments help you feel better and live longer, but they are not cures for ESRD. While patients with ESRD are now living longer than ever, ESRD can cause problems over the years. Some problems are bone disease, high blood pressure, nerve damage, and anemia (having too few red blood cells). Although these problems won't go away with dialysis, doctors now have new and better ways to treat or prevent them. You should discuss these treatments with your doctor.


Transplantation:

Kidney transplantation is a procedure that places a healthy kidney from another person into your body. This one new kidney does all the work that your two failed kidneys cannot do.

A surgeon places the new kidney inside your body between your upper thigh and abdomen. The surgeon connects the artery and vein of the new kidney to your artery and vein. Your blood flows through the new kidney and makes urine, just like your own kidneys did when they were healthy. The new kidney may start working right away or may take up to a few weeks to make urine. Your own kidneys are left where they are, unless they are causing infection or high blood pressure.

You may receive a kidney from a member of your family. This kind of donor is called a living-related donor. You may receive a kidney from a person who has recently died. This type of donor is called a cadaver donor. Sometimes a spouse or very close friend may donate a kidney. This kind of donor is called a living-unrelated donor.

It is very important for the donor's blood and tissues to closely match yours. This match will help prevent your body's immune system from fighting off, or rejecting, the new kidney. A lab will do special tests on blood cells to find out if your body will accept the new kidney.

The time it takes to get a kidney varies. There are not enough cadaver donors for every person who needs a transplant. Because of this, you must be placed on a waiting list to receive a cadaver donor kidney. However, if a relative gives you a kidney, the transplant operation can be done sooner.

The surgery takes from 3 to 6 hours. The usual hospital stay may last from 10 to 14 days. After you leave the hospital, you will go to the clinic for regular followup visits.

If a relative or close friend gives you a kidney, he or she will probably stay in the hospital for one week or less.

Possible Complications. Transplantation is not a cure. There is always a chance that your body will reject your new kidney, no matter how good the match. The chance of your body accepting the new kidney depends on your age, race, and medical condition.

Normally, 75 to 80 percent of transplants from cadaver donors are working one year after surgery. However, transplants from living relatives often work better than transplants from cadaver donors. This fact is because they are usually a closer match.

Your doctor will give you special drugs to help prevent rejection. These are called immunosuppressants. You will need to take these drugs every day for the rest of your life. Sometimes these drugs cannot stop your body from rejecting the new kidney. If this happens, you will go back to some form of dialysis and possibly wait for another transplant.

Treatment with these drugs may cause side effects. The most serious is that they weaken your immune system, making it easier for you get infections. Some drugs also cause changes in how you look. Your face may get fuller. You may gain weight or develop acne or facial hair. Not all patients have these problems, and makeup and diet can help.

Some of these drugs may cause problems such as cataracts, extra stomach acid, and hip disease. In a smaller number of patients, these drugs also may cause liver or kidney damage when used for a long period of time.

Diet for transplant patients is less limiting than it is for dialysis patients. You may still have to cut back on some foods, though. Your diet probably will change as your medicines, blood values, weight, and blood pressure change.

  • You may need to count calories. Your medicine may give you a bigger appetite and cause you to gain weight.
  • You may have to limit eating salty foods. Your medications may cause salt to be held in your body, leading to high blood pressure.
  • You may need to eat less protein. Some medications cause a higher level of wastes to build up in your bloodstream.

Pros and Cons

There are pros and cons to kidney transplantation .

Pros

  • It works like a normal kidney.
  • It helps you feel healthier.
  • You have fewer diet restrictions.
  • There's no need for dialysis.

Cons

  • It requires major surgery.
  • You may need to wait for a donor.
  • One transplant may not last a lifetime. Your body may reject the new kidney.
  • You will have to take drugs for the rest of your life.

Questions You May Want To Ask:

  • Is transplantation the best treatment choice for me? Why or why not?
  • What are my chances of having a successful transplant?
  • How do I find out if a family member or friend can donate?
  • What are the risks to a family member or friend if he or she donates?
  • If a family member or friend doesn't donate, how do I get placed on a waiting list for a kidney? How long will I have to wait?
  • What are the symptoms of rejection?
  • Who will be on my health care team? How can they help me?
  • Who can I talk to about sexuality, finances, or family concerns?
  • How/where can I talk to other people who have faced this decision?
  • Write Other Questions You May Have Here:

Conclusion

It's not always easy to decide which type of treatment is best for you. Your decision depends on your medical condition, lifestyle, and personal likes and dislikes. Discuss the pros and cons of each with your health care team. If you start one form of treatment and decide you'd like to try another, talk it over with your doctor. The key is to learn as much as you can about your choices. With that knowledge, you and your doctor will choose a treatment that suits you best.


Paying for Treatment

Treatment for ESRD is expensive, but the Federal Government helps pay for much of the cost. Often, private insurance or state programs pay the rest.

Medicare

Medicare pays for 80 percent of the cost of your dialysis treatments or transplant, no matter how old you are. To qualify,

  • you must have worked long enough to be insured under Social Security (or be the child of someone who has) or
  • you already must be receiving Social Security benefits.

You should apply for Medicare as soon as possible after beginning dialysis. Often, a social worker at your hospital or dialysis center will help you apply.

Private Insurance

Private insurance often pays for the entire cost of treatment. Or it may pay for the 20 percent that Medicare does not cover. Private insurance also may pay for your prescription drugs.

Medicaid

Medicaid is a state program. Your income must be below a certain level to receive Medicaid funds. Medicaid may pay for your treatments if you cannot receive Medicare. In some states, it also pays the 20 percent that Medicare does not cover. It also may pay for some of your medicines. To apply for Medicaid, talk with your social worker or contact your local health department.

Veterans Administration (VA) Benefits

If you are a veteran, the VA can help pay for treatment. Contact your local VA office for more information.

Social Security Income (SSI) and Social Security Disability Income (SSDI)

These benefits are available from the Social Security Administration. They assist you with the costs of daily living. To find out if you qualify, talk to your social worker or call your local Social Security office.

Organizations That Can Help

There are several groups that offer information and services to kidney patients. You may wish to contact the following:

American Kidney Fund
Suite 1010
6110 Executive Boulevard

Rockville, MD 20852

(800) 638-8299


American Association of Kidney Patients
Suite LL1
1 Davis Boulevard
Tampa, FL 33606

(813) 251-0725


National Kidney Foundation, Inc.
30 East 33rd Street
New York, NY 10016

(800) 622-9010


National Kidney and Urologic Diseases Information Clearinghouse
Box NKUDIC
9000 Rockville Pike
Bethesda, MD 20892
(301) 654-4415