Treatment Options for Kidney Failure Living with End-Stage Renal Disease

Transcription

1 Treatment Options for Kidney Failure Dialysis Center Living with End-Stage Renal Disease 1887_FMech_1601.indd 25 12/29/15 10:56 AM

2 Facing Kidney Failure Your doctor has told you that you have kidney failure, also called end-stage kidney disease (ESKD). This means that both your kidneys no longer do their job. This is not easy to hear. You probably wonder what it means for you and your future. This booklet can help answer many of your questions. Understanding Your Options Now that your kidneys have failed, their job must be done some other way. One type of treatment, called dialysis, can take over the work of the kidneys. A kidney transplant means a healthy kidney is placed in your body. Each type of treatment may mean major changes in the way you live your life. So you have some big decisions ahead of you. Your healthcare team will outline your options and help you choose the treatment that s best for you. If you can, bring a friend or family member with you when you meet with your healthcare provider. This booklet is not intended as a substitute for professional medical care. Only your doctor can diagnose and treat a medical problem. 1997, 2002, 2010, 2016 The StayWell Company, LLC All rights reserved. Made in the USA. 2

3 Making Treatment Decisions Discuss your decision with family and friends. You may have been prepared to hear that you have kidney failure. Or, it may have been a complete surprise to you. Either way, you will soon be asked to help make decisions about your treatment. Right now, you may want to put off thinking about anything to do with your kidneys. But the sooner you get treatment, the quicker you will start to feel better. Begin by writing down the questions that you have. Then, turn the page. The rest of this booklet will tell you more about your kidney problem and what lies ahead. Table of Contents Page Your Healthcare Team 4 Some Things to Think About 5 Understanding the Kidneys Role 6 Hemodialysis 8 Peritoneal Dialysis 12 Kidney Transplant 16 Caring for Yourself 20 Your Emotions 22 Words You May Hear Back Cover 3

4 Your Healthcare Team 4 The members of your healthcare team are the people who work with you to manage your treatment. They will guide you through your choices and teach you how to live with kidney failure. They can also address your concerns and give you support. Work with your team to ensure that you feel your best. The Members of Your Team Your healthcare team will guide you through your treatment. These are some of the people who make up your healthcare team. You may already know a few of them. A nephrologist is a doctor who treats kidney problems. He or she prescribes your treatment. A registered nurse works with you and your doctors to manage your care and help you learn what you need to know about your treatment. A dialysis technician assists with dialysis treatment. A surgeon is a doctor who prepares your body for dialysis or performs a kidney transplant. A dietitian (also called a nutritionist) teaches you which foods and fluids to eat and drink and which to limit. A social worker can help you deal with paperwork, insurance, your work and family life, and any stress you may feel.

5 Some Things to Think About As you read the rest of this booklet, think about the questions outlined below. Knowing the answers to them will help you and your healthcare team choose the treatment that is right for you. Your family, friends, and healthcare team may suggest other issues for you to think about. Your Lifestyle Think about how you live your life each day. Some questions to ask yourself: What do I do for a living? How do I get where I need to go? How active do I like to be? Do I have family members whom I can rely on? Or do they rely Your Finances A government health program called Medicare covers most of the costs of treating kidney failure. Private medical insurance may also provide coverage. Work with your social worker or employer s benefits department to find out what financial help you can expect. Other Considerations Some other things to take into account include: Your age and overall health The types of treatment available in your area Your personal beliefs on me? Reviewing Your Options You and your healthcare team will choose the treatment that seems to fit you best. If you find it doesn t work for you, other options can be explored. You can also choose not to receive treatment. But understand that without treatment, you will die. Refusing treatment is a serious decision and should be thoroughly discussed with your healthcare team and family. 5

6 Understanding the Kidneys Role The kidneys main job is to clean the blood. They filter wastes and excess fluids from hundreds of pints of blood each day. In this way, they maintain the chemical balance the body needs to stay healthy and alive. One working kidney is enough to do this job. If both kidneys fail, their work must then be done another way. Blood moving through kidney Waste, fluid, and chemicals taken out of blood Urine Kidney Ureter Bladder Urethra The waste and fluid the kidneys take out of the blood become urine. Urine is stored in the bladder until it can be passed out of the body. Kidneys Filter the Blood Your kidneys are located just above your waist toward your back. They filter blood by doing the following: Removing waste and fluid. The kidneys take waste products from the blood. They also remove unneeded fluid. Balancing chemicals. The body needs chemicals (such as calcium and phosphorus) to work. Too little or too much of them can make you sick. In the kidneys, chemicals are taken from or added to the blood to keep them in the right balance. The Kidneys Other Tasks In addition to filtering the blood, the kidneys do other tasks, such as: Telling the body to make red blood cells (erythrocytes). These are the cells in the blood that carry oxygen. Helping control blood pressure. Helping keep bones strong. Helping remove medications, toxins, and some hormones from the body. 6

7 When Kidneys Fail If the kidneys fail, blood is no longer filtered. Waste and extra fluids then build up in the body, and chemicals become out of balance. This can make you ill and even cause death. Though end-stage kidney disease has no cure, certain treatments can help keep the body working the best it can. Dialysis Dialysis is a treatment that filters the blood. There are two types of dialysis: Hemodialysis (page 8) filters blood using a manmade filter attached to a machine. Blood travels from your body to the machine, is cleaned, and then is returned to your body. Peritoneal dialysis (page 12) uses the natural lining in your abdomen. A fluid placed inside your abdomen works with the lining to clean your blood. Hemodialysis Kidney Transplant A kidney transplant (page 16) is a type of surgery. A kidney is removed from either another living person or someone who has just died. The donated kidney is then placed in the body of the person with kidney failure. Once in place, the new kidney takes over the work that the old kidneys can no longer do. If the transplant succeeds, dialysis isn t needed. Transplanted kidney Peritoneal dialysis The new kidney is put close to your bladder. Your old kidneys may not be removed. Medications In addition to one of the treatments above, you may also need medications to help with your kidneys other tasks. Your healthcare team can tell you more about these medications. 7

8 Hemodialysis Hemodialysis is one kind of dialysis. It uses a machine that holds a filter called a dialyzer. As blood flows through the dialyzer, waste is removed and fluid and chemicals are balanced. Hemodialysis treatments are usually done at a special dialysis center. In some cases, with special training, treatments may be done at home. How Hemodialysis Is Done Two needles are inserted into a special blood vessel (called an access), usually in your arm. Each needle is attached to a tube. One tube carries your blood into the dialyzer, where it is cleaned. Clean blood returns to your body through a second tube and needle. This is how the dialyzer works: Inside the Dialyzer Blood from your body enters the machine and flows past one side of a membrane. The membrane is a barrier that keeps blood and dialysate from mixing, but lets waste through. Waste, extra fluid, and chemicals move through the membrane into the dialysate. Dialysate with waste Dialysate is a special fluid that pulls waste from blood. It flows past the other side of the membrane. Clean, filtered blood goes back to your body. Fresh dialysate 8

9 Your Experience Hemodialysis takes about 3 to 5 hours per session. It is usually done 3 times a week. You ll have a regular schedule for your hemodialysis. Many centers have evening and weekend hours as well as weekday hours to help you continue working. A trained nurse or technician connects you to the dialysis machine. He or she watches for problems and makes sure you are comfortable. During treatment, only a small amount of blood (about 1 cup) is out of your body at any one time. During or after your first few treatments, you may have a headache or muscle cramps or feel nauseated. These should decrease as your body gets used to the treatments. Hemodialysis done at home uses a small, portable machine. You or a family member must be trained to use it. During your hemodialysis, you can read, talk, or watch TV. Problems to Watch For Call your nurse or dialysis technician if you have any of these symptoms during or after treatment: Chest pain Bleeding from the needle site Shortness of breath Fever or chills Headache or lightheadedness Nausea or vomiting Itching Muscle cramps Feeling hot and sweaty 9

10 Hemodialysis Before hemodialysis can be done, an access (way to get to your blood) is needed. It lets blood leave and return to your body during dialysis. You will be told how to care for this access. You will also be given guidelines on how to stay healthy between treatments. Your healthcare team can teach you how best to follow these guidelines. Hemodialysis Access The hemodialysis access provides a large volume of blood for dialysis. It is usually made in your arm during a short procedure, using one of these methods: A fistula can be made by connecting one of your veins to a nearby artery. Blood Artery Vein flows rapidly from the artery into the vein, enlarging it. It may need weeks or Graft months to develop before it s ready. A graft (piece of manmade tube) may be sewn between an artery and a vein. Blood flows rapidly through the graft from the artery to the vein. A graft is Fistula usually ready to use in a few weeks. While your new access heals, you may need a temporary central vein access. This is a soft tube, usually placed into a A hemodialysis access can be made using neck vein. (In some cases, this could be a fistula or a graft. your permanent access. Your doctor can tell you more about this.) Caring for Your Access If you put your fingers over your access, you ll feel blood rushing through it. This is called a thrill. If the thrill decreases or goes away, let your healthcare provider know right away. Don t wear jewelry or tight clothes on or near your access. Don t let anyone draw blood or take your blood pressure on the arm that has the access. Feel for your thrill regularly. 10

11 Eating and Drinking Hemodialysis filters the blood only a few times a week. Between treatments, your body can t get rid of waste and extra fluid and chemicals. Watching what you eat and drink will help keep these at a safe level. This helps you feel better and makes treatments easier for you. You may also be asked to eat more protein and take vitamin and mineral supplements. A dietitian will teach you what you need to know. Special Precautions Don t drink too much fluid between treatments. Keep your dialysis appointments. Be on time. A medication (called heparin) is added to your blood to keep it from clotting while in the dialyzer. That means you can bleed more easily for a few hours after treatment. During this time, avoid things (like shaving) that may cause cuts or scrapes. Avoid drinking too much fluid between treatments. Possible Complications of Hemodialysis Following are some of the complications that are possible with hemodialysis: Infection Low blood pressure Blood loss Allergic reaction to the dialyzer Making Your Decision Think about what you ve read. Then check the boxes next to the statements that are true for you. The more boxes you check, the more likely it is that this treatment will meet your needs. I like that others will perform my treatment. I like that I would be in a center around others having treatment. I can make treatments part of my daily and weekly schedule. I have a way to get to and from the center for each appointment. I am prepared to be careful about what I eat and drink. 11

12 Peritoneal Dialysis (PD) Peritoneal dialysis (PD) is another type of dialysis. PD uses a natural membrane inside your body and a special solution (dialysate) to cleanse the blood. This solution needs to be changed several times a day. You can usually do this yourself. It can be done in between your activities at home or work. It may also be done at night by a machine. How PD Works PD uses the natural lining inside your abdomen called the peritoneal membrane. This is the lining of your abdominal cavity, which holds organs such as your stomach and intestine. When the abdominal cavity is filled with dialysate, the lining and dialysate work together to clean the blood. Every few hours, the dialysate needs to be changed. The process of changing the dialysate is called an exchange. A Dialysate Exchange A bag of dialysate is connected to a tube (catheter) in your abdomen. Your abdomen fills with dialysate. Waste, fluid, and chemicals flow through the peritoneal membrane into the dialysate. About 2 to 3 liters of liquid are used in each exchange. After a few hours, the dialysate is drained out of your abdomen into an empty bag. Fresh dialysate ready to fill abdomen membrane Peritoneal 12

13 Your Experience PD is a home treatment. You usually don t need to go to a special center. A nurse or technician will train you on how to do PD exchanges. The training can take several weeks. Each day, 4 to 5 exchanges are needed. An exchange takes about 30 minutes. One type of PD is CAPD (continuous ambulatory peritoneal dialysis). For CAPD, you do your own exchanges every 4 to 6 hours during the day. Another type of PD is CCPD (continuous cyclic peritoneal dialysis). With CCPD, a machine called a cycler does most of your exchanges at night while you sleep. You still need to see your healthcare team every 4 weeks so they can make sure your PD treatment is working. A PD exchange can be done at home or in any clean, private place. Problems to Watch For Call your doctor or nurse if you have any of these symptoms: Fever or chills Lightheadedness or dizziness Dialysate that s cloudy or bloody when it drains from your body Pain in your abdomen or around your catheter Warm, red, or draining skin around your catheter Blocked flow into or out of your catheter 13

14 Peritoneal Dialysis (PD) To do PD, you need an access (a way for dialysate to flow into and out of your body). This access is a small, soft tube (catheter) placed into your abdomen. Members of your healthcare team can give you guidelines for caring for your PD catheter. They can also tell you other things you need to know about staying healthy. PD Access The catheter is inserted near your navel during a short procedure. One end of the catheter sits just inside your abdominal cavity. The other end extends a few inches from your skin. During treatment, dialysate drains through the catheter into and out of your abdomen. The end of the catheter is capped, clamped off, and taped to your skin when it s not in use. The catheter stays in place all the time. (It is removed only if you start using a different type of treatment or if it gets infected.) Caring for Your Access The catheter is capped when not in use. Take care of your access to prevent problems such as infection. Problems can mean that a new catheter may have to be placed. Or, you may have to change to another type of dialysis. Always wash your hands before you do an exchange or touch your catheter. Carefully clean and anchor your catheter as you have been taught. Don t let your clothes or things you carry rub or pull at your catheter. The PD access is a catheter that allows you to put dialysate into your abdomen. 14

15 Eating and Drinking With PD, your blood is always being cleaned. That way, wastes have less of a chance to build up. This means fewer limits on eating and drinking than with hemodialysis. To stay healthy, though, you will still have guidelines on what to eat and drink. You may also be asked to take vitamin and mineral supplements. A dietitian will help you learn what you need to know. Special Precautions Dialysate contains sugar, which your body absorbs. This can make you gain weight. Your healthcare team may suggest ways to control your weight (like exercise). If you have diabetes, they ll help you control your blood sugar. Never use a cloudy or leaking bag of dialysate. Never skip an exchange. Always do exchanges in a clean place. Do each exchange exactly as you ve been taught. Possible Complications of PD Following are some of the complications that are possible with PD: Peritonitis (infection inside your abdomen) Infection of the catheter site, sometimes requiring moving the catheter to a different site Blockage of the catheter Blood sugar problems (if you have diabetes) Making Your Decision Think about what you ve read. Then check the boxes next to the statements that are true for you. The more boxes you check, the more likely it is that this treatment will meet your needs. I like that I will perform my treatment myself. I like that I can do my treatments in any clean place. I d rather take small amounts of time each day for my treatment than 3 to 4 hours, 3 days a week. I like that I may not have as many limits on what I eat and drink. I am prepared to do what I need to avoid an infection. 15

16 16 Kidney Transplant A kidney transplant is surgery to place a donated kidney into your body. This kidney takes over the job of filtering your blood. A kidney transplant is the treatment that is closest to having your own healthy kidney. But a transplanted kidney still needs good care to help keep it working right. Finding a New Kidney A kidney transplant is not for everyone. Your doctor can tell you if it s a good option for you. The new kidney may come from a living person (living donor). This can be someone in your immediate family. Or it can be a loved one who s not your blood relative. A kidney may also come from a person who has recently died (cadaver donor). There is a waiting list for kidneys from cadaver donors. The wait can range from months to years, depending on your blood type. Preparing for Surgery Talk to your loved ones about transplant surgery. Many tests are done to be sure a person can be a donor. You and your donor will be told how to prepare for surgery. If you are on a waiting list, you may have only a few hours to get ready once a kidney has been found for you. The surgery must be done right away. But you will be told ahead of time what to do when you receive the call. If for any reason you cannot have the surgery when a kidney is found, you won t lose your place on the waiting list.

17 The Transplant Surgery The surgery usually takes about 3 to 6 hours. All kidneys are screened for disease before they are transplanted. In most cases, your old kidneys will not be removed. This is because even failed kidneys release chemicals that help your body work. The new kidney is placed in the lower part of your abdomen near your groin. Here, it is protected by your pelvic bone. The new kidney is attached to nearby blood vessels. Blood can then flow through to be filtered. The kidney s ureter is also connected to your bladder to allow urine to flow out. Pelvic bone Transplanted kidney Ureter Failed kidneys Artery Vein Bladder Recovering from Surgery You (and any living donor) will recover in the hospital after surgery. The donor may stay in the hospital for up to a week. You may stay longer. Your new kidney may start to work right away. Or, it may take a week or two to start working. You will be told what to do and what not to do while you re healing. Notes to the Donor You are thinking about donating a kidney to a loved one. Be sure to have all your questions answered before you decide. Here are some things to know: You can only donate if your blood type is compatible with the recipient s. Other types of matching may also be done. Your kidney is most likely to match if you are the recipient s blood relation. However, transplants from unrelated donors are becoming more and more common. You will be given a thorough medical checkup to be sure you re healthy enough to donate. If you have one kidney removed, the other kidney will take over and keep you healthy. Some of the costs of donating a kidney will be covered by the recipient s insurance. 17

18 Kidney Transplant A successfully transplanted kidney works like a normal kidney to filter your blood. You won t need dialysis. But you will need to take medications to keep your new kidney healthy. Talk to your healthcare team about these medications. Also discuss any other guidelines you will need to follow to keep your new kidney working right. Preventing Rejection Your body has an immune system to attack germs and prevent infection. Because the transplanted kidney is not a natural part of your body, your body s immune system may attack it. This is called rejection. Certain medications can help keep rejection from happening. These medications will have to be taken for the rest of your life. Treating Rejection If rejection does happen, treatment may stop it. If it can t be stopped, your new kidney will no longer work. You will then need to have dialysis to keep you alive. In time, you may also be able to have a second transplant. Possible Side Effects of Transplant Medications You may need to take many medications to keep your new kidney healthy. Medications to prevent rejection can have many side effects. The medications weaken the immune system (the system that normally helps your body fight infection). So, you may get more infections and they may be more serious. You may also be at increased risk for certain types of cancer. Talk to your healthcare provider about these and other possible side effects. 18

19 Eating and Drinking As long as the kidney stays healthy, you won t need dialysis. And you will have more choices about what to eat and drink than with dialysis. But you will still have some diet guidelines to follow. A dietitian can teach you what you need to know. Special Precautions Take your medications as directed. If you don t, your new kidney will stop working and you will need dialysis again. Visit your doctor regularly for blood tests. These check how well your kidney and transplant medications are working. Call your doctor right away if you get any kind of infection. With a new kidney, you may feel freer to enjoy life. Possible Complications of Transplantation Kidney transplant surgery, like any surgery, can have complications. In addition, there is always the risk that the new kidney will be rejected. As discussed earlier, the medications that prevent rejection also have some side effects. Your healthcare provider can talk to you about all of these in more detail. Making Your Decision Think about what you ve read. Then check the boxes next to the statements that are true for you. The more boxes you check, the more likely it is that this treatment will meet your needs. I understand that a transplant means major surgery. I understand that I will need dialysis treatments until the transplant is done. I like that kidney transplant is the closest treatment to having my own healthy kidneys. I like that I would have few limits on eating and drinking. I m prepared to take medication for the rest of my life, even if it has unpleasant side effects. I understand that kidney transplant alone is not a cure. Rejection leading to loss of the kidney is always a possibility. 19

20 Caring for Yourself 20 No matter which treatment you choose, you will need to learn new ways to care for yourself. Kidney failure and its treatment will mean changes in your daily life. These may involve work, family, and friends. Whatever the changes you need to make, the members of your healthcare team can help you with them. Your Daily Life Kidney failure treatment may seem complex. You may wonder how your treatment will fit into the rest of your life. But, with some changes, you can live a full life with kidney failure. If you work, talk to your employer about any changes you need to make in your duties or schedule. A dietitian will give you your meal guidelines and help you follow them. Food, Drink, and Medications In most cases, you will be able to continue working. No matter which treatment you choose, you will have some limits on what you can eat and drink. A dietitian will help you learn these. Treatment means taking medications. Some of these you need to take one or more times a day. Others are given to you during treatment or doctor visits. Have a list of the medications you take. Show it to any healthcare provider you visit. Also check with your doctor or pharmacist before taking any medication, including aspirin, that is not on the list.

21 Making Healthy Choices Certain lifestyle choices will help your treatment work better. Exercise may reduce your treatment s side effects. It can also help you control your weight and blood pressure. Talk to your healthcare team about which types of exercise are good for you. If you smoke, it s important that you quit. Smoking narrows blood vessels and causes infections, which are both dangerous to people with kidney failure. Your healthcare team can help you plan to quit. Looking After Your Health Make exercise more fun by asking a friend to join you. With the right treatment, you should begin to feel better. You should sleep better, have more energy, and have a better appetite. If you follow all the guidelines you are given and still don t feel well, tell your doctor. Some changes may need to be made in your treatment. And remember that you will need to have regular checkups with your doctor. Ask your doctor or nurse how often to schedule these visits. Things to Know Check the boxes that are true for you. For each box you don t check, ask a healthcare provider to help you learn what you need to know. I have a list of all the medications that I take. I know which foods I should eat. I also know how much I should eat. I have talked to a healthcare provider about exercise. I have names and numbers for all my healthcare providers. I know what my insurance covers and what it doesn t. Other things to know: 21

22 Your Emotions Having kidney failure means many changes in your life. Sometimes, it may feel like too much to cope with. But you can learn how to deal with these emotions so you can feel better about your treatment and yourself. Learning as much as you can about kidney failure is a good place to start. Ask family, friends, and healthcare providers for help when you need it. Understanding Your Emotions Living with a medical condition like kidney failure can be very stressful. It is common at times to feel: Angry and frustrated over having to depend on others. Confused about all the instructions you ve been given. Worried about things going wrong with your treatment. Hopeless and depressed about your future. Unhappy with your body. Don t keep these feelings to yourself. Talk to your healthcare team and your loved ones. They can listen and may even know ways to help. Talking to someone you feel close to may help when you re feeling down. 22

23 Accepting Your Body s Changes Kidney failure and its treatment cause changes in your body. These changes can affect the way you feel about your sexuality. Your desire for and feelings about sex may change. Although these feelings can be hard to discuss, be open with your partner. Also talk to your healthcare providers. They can help you understand, prepare for, and accept your body s changes. Finding Support In a support group, you can talk to others who have kidney failure. People sometimes find it hard to ask others for help. But it s also hard to face a chronic illness alone. When you need some help or just want to talk, turn to friends, family, and members of your healthcare team. Also consider joining a support group. In a support group, people meet to talk about common problems. Ask your healthcare provider if there is a kidney failure support group nearby. Resources The organizations below can give you more information on kidney disease and kidney failure. They may also guide you to local resources, such as support groups. American Association of Kidney Patients American Kidney Fund National Kidney Foundation

24 Words You May Hear Below are some other words and phrases that you may hear your healthcare team use when discussing your treatment. Artificial kidney: The filtering part of the hemodialysis machine. Also called the dialyzer. Bruit: The rushing sound that may be heard when a fistula is listened to through a stethoscope. (This is also called a thrill.) Cimino: A type of fistula (one form of hemodialysis access). Creatinine: A type of waste that the body makes. A working kidney removes it from the blood. Creatinine levels tell how well a kidney is working. Erythropoietin (EPO): A hormone that working kidneys produce. It tells the body to make red blood cells. People on dialysis are often given extra EPO. Consultant: Hector L. Santiesteban, PhD, MD, Nephrology With contributions by: William Amend, MD, Nephrology Joann Bear-Wurzer, RN, BSN, Case Manager, Dialysis Raymond Pollak, MD, FRCS (Ed), FACS, Transplant Surgery Gary Ullrich, CHT, Nephrology Renal: Relating to the kidneys. Renal replacement therapy: Any of the types of treatment for kidney failure. This includes dialysis and kidney transplant. Urea: A type of waste that the body makes when protein is used. Levels of urea in the blood are a measure of how well kidney failure treatment is working. Uremia: The signs and symptoms that result when waste products that are normally removed by the kidneys build up in the blood