Life Goes On. After Your Kidneys Stop Working. Put the Dialysis and Transplant Puzzle Together and Learn to Make Smart Choices About Your Care

Transcription

1 Life Goes On After Your Kidneys Stop Working Put the Dialysis and Transplant Puzzle Together and Learn to Make Smart Choices About Your Care

2 Your Important Phone Numbers Doctor: Dialysis Unit: Dialysis Head Nurse: Name Number Life Goes On After Your Kidneys Stop Working Dietitian: Social Worker: Transplant Coordinator: Business Office: Pharmacy: Dentist: Home Dialysis Supply Company: Home Dialysis Machine Serial Numbers: Local Social Security Office: Other: Other: Other: End Stage Renal Disease Network of Texas, Inc Dallas Parkway #660 Dallas, Texas (972) Version 2.0 September 2002 Published under contract with Centers for Medicare and Medicaid Services

3 Life Goes On Learning that your kidneys aren t working right and that you need dialysis or a kidney transplant is never easy. The first time you learned that you would need dialysis or a transplant, you may have found it hard to believe. Even if you d been feeling sick for a long time, hearing the words - You need to start dialysis is a shock. You probably felt sad, angry, helpless and hopeless. You may have thought - I don t like what is happening! and Why me? These feelings are normal - after all, you didn t ask to get kidney failure. Unfortunately, you can t ignore the fact that your life has changed. The changes that you are going through can be confusing and frustrating. Change is never easy. Every person has to deal with the changes caused by kidney failure in his or her own way. Just remember that it takes time to adjust to change, but you can do it! As you deal with kidney failure and the changes in your life, there may be things you can t control. One of the things that you can control is how you live your life from now on! Some people build their entire lives around dialysis and the problems that come with having kidney failure. Others look at dialysis or transplant as a way to stay healthy and try to live as normally as possible. The key to living as normally as possible is to learn as much as you can about your disease and your treatment. The more you know the easier it is to take control of your life. This book is our way of helping you learn some of the things you need to know.

4 Putting the Pieces of the Puzzle Together Think of the things you will learn in this book as pieces of a puzzle. When you put a puzzle together, you start with a lot of little puzzle pieces in a box. If you look at just one piece of the puzzle, it doesn t make much sense. When you start putting the pieces of the puzzle together, however, you begin to see a picture that makes sense. Each chapter in this book is like a piece of the puzzle. Each piece will tell you about one part of your changing life. Learning about the puzzle pieces of kidney failure, dialysis and transplant and how they fit together will help you understand the changes in your life. More important, you will be learning how to make smart choices about your care. The next page is a list of the chapters or puzzle pieces that make up this book. Because kidney failure affects so many parts of your life, there are a lot of puzzle pieces to learn about. Don t feel like you have to read everything in this book at once. Look over the list of chapters, and then pick one that you want to read. Then, work your way through the book, a page or a chapter at a time! If you have questions as you read the book, write them down. Then take the book and your questions with you the next time you go back to your facility. That way your doctor, nurses, social worker and dietitian can answer your questions. Rx $ $ $ $ $ SALT Take Control Of Your Life Helpful tips and information Your rights and responsibilities The Kidneys - How Healthy Kidneys Work and What Can Make Them Sick Choices The different ways kidney failure can be treated About hemodialysis Pros and cons of hemodialysis About peritoneal dialysis Pros and cons of peritoneal dialysis About kidney transplant Pros and cons of kidney transplant Texas transplant programs The choice of no treatment or stopping treatment If You Are On Hemodialysis Things you need to know to stay healthy Your vascular access Learn how to double check your way to a safe dialysis If You Are On Peritoneal Dialysis Things you need to know to stay healthy Your peritoneal dialysis catheter Getting on With Your Life The Puzzle Pieces

5 Take Control of Your Life on Dialysis Returning to work or school Exercise to feel better Money - An Important Piece of The Puzzle Diet - Why You Have To Change The Way You Eat and Drink Medicines How they work and why you need to take them Flu shots and vaccinations The ESRD Network - Your Connection To Medicare Problems & Questions - How To Handle Problems With Your Facility Advance Directives - Decisions That Affect You And Your Family Want to Know More? Who to call and their phone numbers Books, pamphlets and newsletters about kidney failure Take Control of Your Life on Dialysis Helpful Tips and Information Don t let kidney failure control your life! You CAN take control of your life. First, though, you need to learn all you can about kidney failure, dialysis and transplant. The more you learn, the easier it will be for you to take control of your life. These are some of the things you need to learn: How kidney failure changes the way your body works. How dialysis removes the waste products that build up in your body when you have kidney failure. How the amount of time you spend on dialysis can make a difference in how well you feel. How to stay as healthy as possible on dialysis. How to keep your vascular access (fistula, graft, or catheter) working right. How to keep your peritoneal catheter working right. Why it s important to eat the right foods and control your fluid intake. Why it s important to take your medicines. How can I learn about kidney failure, dialysis and kidney transplants? FIRST - Read! Read! Read! Read the information about kidney failure, dialysis and transplant that your doctors, nurses, dietitians, social workers and technicians give you. They know this information because it s their job. You should learn this because it s your life! 1

6 Putting The Puzzle Together Take Control of Your Life on Dialysis Look for handouts, magazines or newspapers at your dialysis or transplant facility. Many facilities put those articles on a bulletin board in the waiting room. The National Kidney Foundation (NKF), the American Association of Kidney Patients (AAKP), the American Kidney Fund (AKF) and the ESRD Network print magazines and newspapers for people who are on dialysis or who have a transplant. If you have trouble reading because of eyesight or language problems, ask someone to read this book to you. Or, if you know someone else who has trouble reading, suggest that they ask someone to read this book to them. Read the chapters in this book that apply to you. Then, look in the chapter called Want to Know More? The books, magazines, pamphlets, and organizations listed in this chapter can help you learn more about the changes in your life. If you have access to a computer at home, at your facility, or at the public library, you can search for kidney disease and renal related web sites to learn more about kidney disease and it s treatment. In the chapter Want to Know More?, you will find a list of some of these web sites. THEN - Ask! Ask! Ask! Ask your staff questions when you don t understand something or something seems wrong. Attend patient meetings and workshops. Talk with other patients about your questions and concerns. If you want information and can t find it, ask your staff to help you find what you need. Ask your Social Worker about special programs that are available to you for financial aid, support and education. Remember that even though your lifestyle has changed, you are still the same person that you were before your kidneys failed! Can I do the same things I did before my kidneys failed? To be successful with dialysis or a transplant, you should keep your life as normal as possible. You may need to adjust your time schedule or activity level. But, you should try to stay involved in the activities that you enjoyed before your kidneys stopped working. Many people on dialysis or transplant continue to work or go to school. Others travel, attend church, or stay busy with clubs, hobbies or volunteer work. You might want to become active in your dialysis or transplant clinic as a patient representative, or start or become part of a clinic support group. You should exercise at least every other day, even if you just walk around your house several times. Talk with your doctor about the kinds of exercise that will work best for you. Look at the positive things in your life and try not to always think about the negatives. Do things that make you feel happy! Talk about your feelings with family or friends. That is the only way that they will know what you re going through. If they understand more about you and your life, they can be more helpful to you when you need them. It is normal to feel sad after starting dialysis or getting a transplant. This sadness may stay for a long time or it may get worse and turn into depression or even thoughts of ending your life. If you feel sad all the time or think about ending your 2 3

7 Putting The Puzzle Together Take Control of Your Life on Dialysis life, you need to talk to your doctor or social worker right away. Your doctor and social worker can work with you to help you feel better. If your doctor or social worker can t help, he/she can give you the names of professionals who can help you. You shouldn t have to feel sad all the time. WHAT CAN I DO TO HELP MYSELF? You will find that it is easier to take control of your life if you stay active. You should try to stay active in the time that you spend with your family and friends. You should also stay active in your health care. Staying active in your care means: Following your diet and fluid limits. Taking your medicines. Keeping track of your laboratory test results. Learning how to care for your vascular access. Learning how to care for your peritoneal catheter. If you are on in-center hemodialysis Showing up for all of your treatments on time. Staying on the machine for your whole treatment. If you do home dialysis Doing all of your treatments or exchanges. Taking your medicines every day. If you have a transplant Showing up for all of your clinic visits. Why do I need to know my rights and responsibilities? You have a choice in treatment decisions that affect you. In order to make the best choices, however, you need to learn about and understand your patient rights and responsibilities. Your dialysis or transplant facility has a written statement that explains your rights and responsibilities. When you started at your facility, a member of your treatment team should have discussed these with you. You should also have been given a written copy. If you are not sure what your rights and responsibilities are, you should talk to a member of your treatment team. It is important for you and your family to understand your rights and your responsibilities. What are my rights as a dialysis or transplant patient? There are rules that tell dialysis and transplant facilities how they have to operate. These rules say- You have the right to be told about: Your rights and responsibilities. Rules in your facility about patient behavior and responsibilities. Your medical condition. The methods available to treat ESRD. Services at your facility. Dialyzer reuse. Expenses that your facility charges that aren t paid by Medicare or co-insurance. You have the right to: Your Rights and Responsibilites Rights and Responsibilites Expect encouragement and help in understanding and using your rights and responsibilities. 4 5

8 Putting The Puzzle Together Take Control of Your Life on Dialysis Be treated at the facility that you choose. In some cases, however, there may be medical, legal, insurance, safety or available space reasons why this is not possible. Be treated with consideration, respect and the belief that you are an individual with your own personal needs. This includes the right to privacy about your medical condition and treatment. Receive help in starting the treatment of your choice, if the treatment team agree this is a good medical choice for you. Be given the chance to work with your doctors, nurses, dietitian, social worker and patient care technicians to plan your dialysis or transplant care. Have your dialysis scheduled at a time that is good for you, whenever possible. This is especially true if you have a job, are in school, or if you have other special needs. Get quick nursing/medical attention, especially in an emergency. Accept or refuse any medicine or treatment offered to you. Be allowed to choose whether or not you want to take part in research studies. Be told about advance directives. An advance directive is a way for you to tell the health care team and your family members the medical care that you want in the case of an emergency. Read the chapter called Advance Directives - Decisions That Affect You And Your Family for more about advance directives. Have your personal and medical records treated privately. You also have the right to agree or refuse to have your records given to anyone who doesn t work at your facility. (The only times your records can be given to someone outside your facility are if you move to another facility or if there is a federal, state or local law which your facility must follow). Do I have any responsibilities to my dialysis or transplant facility? YES - Everyone who gets dialysis or has a transplant has a responsibility to themselves and others. You should always try to: Arrive on time for treatments or clinic visits. You should always let your facility know ahead of time (when possible) if you are going to: Be late for your dialysis treatment or clinic visit. Miss a dialysis treatment or clinic visit. Treat other patients and staff with respect and consideration. Treatment Plan Follow the treatment plan that your doctor has ordered for you. This includes your prescribed diet, medicines and dialysis treatment. Bring all of the medicines that you take to the facility to be checked when you are asked to do so. Let the head nurse or doctor know if you are having medical problems. Tell the staff or doctor if you don t understand any instructions or explanations that you have been given. Also, if you know that you can t follow the instructions (for any reason), you should tell the staff or doctor. Follow your facility s rules about smoking, eating, drinking and visitors. Diet Medicines Dialysis Arrange your transportation to and from the facility. If you need help with transportation, find out who is responsible for working on transportation problems in your facility and talk with that person. 6 7

9 The Kidneys Where Are My Kidneys? The Kidneys How Healthy Kidneys Work & What Can Make Them Sick You have two kidneys that are shaped like large kidney beans. The kidneys lie in the middle of your back below the rib cage. In adults, each kidney is about the size of a closed fist, and weighs about one fourth of a pound. The two kidneys are attached to your bladder. The bladder holds your urine after your kidneys make it. Most people are born with two kidneys. However, some people are born with only one kidney and live a normal life. Kidneys Ureters Bladder Urethra 9

10 Putting The Puzzle Together The Kidneys What do the kidneys do & why are they important? Healthy kidneys work 24 hours a day. They do many things that keep your body healthy and working its best. Most people don t realize all of the things that the kidneys do to keep them alive and healthy until something goes wrong. The kidneys work to: Take out the trash - As your body works, it builds up waste products or trash that need to be removed from the body. The kidneys remove these waste products from your body. Flush extra water out of the body - The kidneys get rid of the extra water as urine. Balance important minerals and chemicals in the body (like sodium, potassium, calcium and phosphorus). Manufacture or make chemicals called hormones that: Help control blood pressure. Help make the red blood cells that carry oxygen to your whole body. What happens when the kidneys stop working? When the kidneys stop working, they are not able to keep the body healthy. Kidneys that aren t working can t remove the trash (waste products) and extra water from your body. Because the waste products and extra water have nowhere to go, they build up in your body and make you feel very sick. When the kidneys stop working, this is called kidney failure. There are two kinds of kidney failure: Kidney failure that can be fixed - This kind of kidney failure usually happens quickly. It can happen after burns, poisonings or after losing a lot of blood. When this happens, the damage to the kidneys can usually be treated and is not permanent. This kind of kidney failure is called acute kidney failure. Dialysis may be needed for a short time until the kidneys can heal. Kidney failure that can t be fixed - This kind of kidney failure usually happens slowly over many years (although it can happen quickly with no warning). The damage to the kidneys cannot be treated and is permanent. This kind of kidney failure is called chronic kidney failure or End Stage Renal Disease (ESRD). People with chronic kidney failure will eventually need either dialysis or a kidney transplant to stay alive. What causes chronic kidney failure? The most common causes of chronic kidney failure are diabetes and high blood pressure. Other things that can cause ESRD are infections, anything that blocks the path of the urine, diseases that affect the kidney, and drugs or chemicals that damage the kidney. Some kidney diseases, like polycystic kidney disease, are inherited (passed down in families)

11 Putting The Puzzle Together Choices What are the signs of chronic kidney failure? The kidneys can be failing for months or years without any signs. However, many times there are warning signs that something is wrong with the kidneys. These warning signs are: A change in how often or when a person passes urine. Burning that happens when urine is passed. Bloody or coffee-colored urine. Swelling of the face, feet, or belly that doesn t go away. Lower back pain or aching. High blood pressure. Does chronic kidney failure cause other changes in my body? Yes. Other changes that happen with chronic kidney failure are: Trouble breathing. Poor appetite. Changes in your thinking. Dizziness. Problems sleeping. Losing weight. Itching all over the body. Numbness in arms and legs. Nausea and vomiting. Headaches. Changes in how some foods taste. Choices The Different Ways Kidney Failure Can Be Treated What treatment choices do I have now that my kidneys have stopped working? There are two types of treatment for kidney failure. They are dialysis and kidney transplant. Short definitions of dialysis and kidney transplant are given below. Keep reading in this chapter to find out more information about these treatment choices. Dialysis (di-al -a-sis) is a medical word that means cleaning the blood by artificial means. During dialysis, wastes and extra fluid that build up with kidney failure are removed from the blood. There are two types of dialysis: Hemodialysis (he-mo-di-al -a-sis) cleans the blood using a special filter called an artificial kidney. To learn more, read the chapter called About Hemodialysis. Peritoneal Dialysis (pear-a-ton-é-el di-al -a-sis) cleans the blood using a part of your body to filter the blood. To learn more, read the chapter called About Peritoneal Dialysis. Kidney Transplant is when a kidney from another person (donor) is put into the body of a person with kidney failure. The new kidney is called a transplanted kidney. The transplanted kidney takes over for the person s own failed kidneys. Many people think that a kidney transplant is a cure, but that s not true. A kidney transplant is a treatment for kidney failure - it is not a cure. To learn more, read the chapter called About Kidney Transplant

12 Putting The Puzzle Together Choices Who decides which treatment choice is best for me? When your kidneys were failing, your nephrologist (kidney doctor) should have talked with you about the treatment choices that would work best for you. Hopefully, you were able to choose the treatment you thought was best for you. But, if you were very sick and needed dialysis quickly, your doctor may have had to make the decision for you. I m already doing one type of treatment - why do I need to know about the other treatments? Once I decide on a treatment, can I change my mind? Even if you have already started one type of treatment, you may decide at some point that you would like to try something different. Your decision is never final. Also, in the future, you may need to change to a different treatment for medical reasons. It never hurts to know as much as you can about all of the treatments used to treat kidney failure. Texas Dialysis Facts 90% of the people on dialysis are treated with hemodialysis for their kidney failure. Less than 1% of the people on dialysis in Texas do home hemodialysis. 10% of the people on dialysis in Texas do peritoneal dialysis at home. If I decide to change to a different treatment, will any of the treatment choices work for me? Not every treatment will work for every person. There are many things that determine whether or not a different treatment will work for you. You and your nephrologist (kidney doctor) will need to look at: Your kidney disease - Some diseases may keep you from being successful with one or more of the treatments. Your lifestyle - Do you work? Do you like to travel? Do you go to school? Do you care for small children at home? How far you live from a dialysis center - Are you close to a dialysis center? Do you have transportation to the dialysis center? Home setting - Do you live in a house or apartment? What changes in plumbing or electricity would need to be made if you wanted to do dialysis at home? Do you have room to store supplies for home dialysis? Physical abilities - Are you physically able to get to the dialysis unit? Are you physically able to do the steps of home dialysis? Your support system - Do your family and friends support your treatment choice? If you want to do home hemodialysis, do you have a family member or friend who can help you with the treatments? Or do you have private insurance that will pay for someone to be a home hemodialysis helper? Emotional/Mental State - How good do you feel emotionally? How do you feel about the changes in your life? Everybody is nervous at first when things change or when they have to learn something new. However, the more you learn about your treatment, the better you will feel. You may decide that you want to learn how to do your dialysis at home or you may decide that you re ready to try to get a kidney transplant

13 Putting The Puzzle Together Choices What is hemodialysis? Hemo means blood and dialysis means being put through a filter or strainer. Hemodialysis is a medical treatment that cleans your blood using a special filter. The filter, called an artificial kidney or dialyzer, works like a spaghetti strainer. As your blood moves through the strainer, the bad things go through the holes in the strainer and are washed down the drain, while the good things are saved. The bad things that are taken out during hemodialysis treatments are the waste products or trash and extra water that build up when the kidneys don t work. The good things that are saved are the blood cells and proteins that are in your blood. During a dialysis treatment dirty blood (full of waste products) is sent to the artificial kidney or strainer. The blood is cleaned in the artificial kidney and the clean blood is returned to your body. It may look like there is a lot of blood out of your body during dialysis. However, it really only takes about one cup of your blood to fill the artificial kidney and tubing. Hemodialysis helps your body in other ways. The treatments help to: Control blood pressure. About Hemodialysis Balance important minerals and chemicals like potassium, salt, chloride, calcium and phosphorus. Do I have to do anything to get ready for hemodialysis? Before you can have regular hemodialysis treatments, you need to have a way to safely remove and return blood from your body. Your normal veins are not big enough or strong enough to use for a hemodialysis treatment. Therefore, a special way of removing blood from the body, called a vascular access must be created. Vascular and access are medical words that mean a way to get to your blood. The three kinds of vascular access are fistula, graft and catheter. Other words for vascular access are dialysis access or access. Read the chapter called If You Are On Hemodialysis - Your Vascular Access for important information about your fistula, graft or catheter. What happens during a hemodialysis treatment? FIRST Two needles are put into your fistula or graft at the start of dialysis. This allows the blood to move from inside your body to the dialysis machine. The needles also give your blood a path back into your body. (If you have a catheter, the nurse will clean the catheter and remove the end caps). THEN The needles or catheter are attached to plastic tubing, called blood tubing. The tubing carries the blood from your body to the dialysis machine that holds the artificial kidney. The dialysis machine itself doesn t clean the blood. The job of the dialysis machine is to make sure the dialysis treatment is safe. All dialysis machines have gauges and loud alarms that check things like your blood pressure, the speed of the blood moving through the tubing, how much water is taken off and how easy it is for the blood to move through the tubing

14 Putting The Puzzle Together Choices NEXT The tubing carries the dirty blood with waste products to the artificial kidney or dialyzer. The dirty blood goes through the inside of the dialyzer, where it is strained or cleaned. While the blood is inside the dialyzer, the dialyzer is also removing any extra fluid in the blood. FINALLY After the clean blood leaves the dialyzer, the tubing returns the clean blood back to your body through the fistula, graft or catheter. These steps are repeated over and over during the dialysis treatment to make sure that as much blood as possible is cleaned: The "clean" blood leaves the dialyzer and returns to your body. "Dirty" Blood moves from your body to the dialyzer. The dialyzer cleans your blood and removes extra water. AFTER THE TREATMENT IS OVER The needles are removed from the fistula or graft. The small holes in your skin from the needles are covered with sterile dressings and pressure is applied to stop any bleeding. These small holes, called needle sites, will heal quickly like a small cut. Before you leave the dialysis unit, the needle sites are covered with band-aids or sterile dressings. Sometimes the needle sites will start bleeding again after you ve left the clinic. You should always keep extra sterile dressings in your purse, backpack, or car. Hemodialysis treatments are done three times a week. Each treatment usually lasts for 4-5 hours. During the treatment, you can usually keep busy doing things like reading, writing, sleeping, talking or watching TV. The time that you need to spend on hemodialysis depends on several things: Your body size. How much weight you gain between treatments. Your laboratory results. Whether or not your kidneys still do a little bit of work. Where can hemodialysis treatments be done? Hemodialysis can be done in the hospital, at an outpatient dialysis clinic or in the home. In the hospital or dialysis clinic, nurses and technicians who have special training carry out the steps of the hemodialysis treatment. Some people are able to do their hemodialysis treatments at home. People that dialyze at home need to have a partner to help them. The partner is usually a family member or friend. If you have private insurance, your insurance may pay for a home hemodialysis helper. If you think you might be interested in home hemodialysis, ask your nurse, social worker or doctor for more information. If you decide to do home hemodialysis, you and your partner will receive special training. The training will teach you about the dialysis machine and how to safely do the steps of a dialysis treatment at home. People on home hemodialysis still have a connection to the dialysis clinic and their nurse, social worker, dietitian and doctor. They talk with their home training staff by phone and they return to the dialysis clinic every 1-3 months for blood work and check-ups. What is self-care dialysis? 18 19

15 Putting The Puzzle Together Choices Self-care is a way that you can be more involved in your dialysis care. People who do self-care at their dialysis units learn to do some of the dialysis steps usually done by their nurses and technicians. For example, people who do self-care may: Hold needle sites after dialysis. Check blood pressures before, after and during the dialysis treatment and write the blood pressures on the dialysis record. Weigh before and after dialysis and write the weights on the dialysis record. Set up the dialysis machine. Insert the needles into their fistula or graft. Hook themselves up to the dialysis machine. The idea of doing self-care dialysis may seem scary, but many people like to do self-care. They feel more in control of their disease. Many patients who learn to put in their own needles (stick themselves) find it easier and less painful. After all, you know your fistula or graft better than anyone else! Doing self-care does not mean that you have to be completely in charge of your care. You can decide what steps you would like to learn. The nurses and technicians are always there if you have a problem or if you need help. If you are interested in learning how to do self-care dialysis, talk with your nurse, social worker and doctor. Some units have self-care training programs. Even if your unit doesn t have a program to teach self-care, your nurses may be able to teach you some of these things. What problems can happen during hemodialysis? Sometimes people on hemodialysis do have problems. These problems are caused by the changes that happen in your body during dialysis. The water and chemical balance in your body can change very quickly during dialysis. Problems that can occur are muscle cramps and hypotension (low blood pressure). Hypotension, which is a sudden drop in your 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 problems if you follow the proper diet and take your medicines as directed. You should always let your nurses and doctor know if you are having any problems on dialysis or at home. Many times, the problems can be treated quickly and easily. Do I have to watch what I eat if I m on hemodialysis? Yes. Following a proper diet helps to control the amount of waste products or trash in your blood. Your clinic dietitian can help you plan meals according to your doctor s orders. To find out more about what you should and shouldn t eat, talk with your dietitian. Some facilities let you eat and drink during your dialysis treatment. You may think that it s safe to eat and drink anything you want before your treatment or while you re on the machine. That is not true! The waste products from what you eat and drink on the machine will not be cleaned out or dialyzed until your next treatment. They will stay in your body for the next 1 to 2 days. So, even if your facility does let you eat and drink during your dialysis treatment - think twice! 20 21

16 Putting The Puzzle Together Choices Everything in life has a good side and a not so good side. Treatments for kidney failure are the same way. Every treatment has pros (good things) and cons (things you may not like). Every person sees things differently. Something that you don t like may be a good thing for another person. Below are the pros and cons of in-center hemodialysis and home hemodialysis. In-Center Hemodialysis Some of the Pros (the good things) of In-Center Hemodialysis You have trained professionals with you at all times. Medical help is available quickly if there is an emergency. You can meet and talk with other people on dialysis. Dialysis is a social time for many people. There is no machine to take care of and store. Your treatments are only 3 times a week. Some of the Cons (things you may not like) of In-Center Hemodialysis Staff who are not familiar with your fistula or graft may put in your dialysis needles. RULES FOR VISITORS Pros and Cons of Hemodialysis You must follow clinic rules - for example, eating/no eating and limits on the number of visitors you can have during your treatment and when they can visit. Your treatments are scheduled by the center. You must travel to and from the center for treatments. Some of the Pros (the good things) of Home Hemodialysis You can choose the time of day you want to dialyze. Although, you will still have to dialyze for the ordered number of hours and days. You don t have to travel to and from a dialysis center 3 times/week. A home dialysis nurse is on call to answer questions or solve any problems you may have with the dialysis treatment. You have more control over your treatment and your life. You have more independence. You decide if and when you want to eat or have visitors. The same person helps you with your dialysis every time. Some of the Cons (things you may not like) of Home Hemodialysis You need a partner. You and your partner need to be trained for home dialysis. You have fewer chances to meet and talk with other people on dialysis. You need room to store the machine and supplies at home. You will need to call paramedics for medical help if you have an emergency that you can t take care of. Learning how to handle dialysis emergencies is a big part of the home hemodialysis training. Home Hemodialysis 22 23

17 Putting The Puzzle Together Choices What is Peritoneal Dialysis? Peritoneal dialysis (PD) is a medical treatment that cleans the blood. PD does not use an artificial kidney or dialyzer. Instead, PD uses the inside of your own body to strain or filter the blood. The part of your body that strains the blood is the paper-thin lining that covers and protects your bowel and other organs inside your belly. This lining is called the peritoneal membrane. Everybody has a peritoneal membrane or lining. The main job of the membrane is to protect the organs, but the peritoneal membrane also makes a good dialysis filter or strainer. How does peritoneal dialysis work? About Peritoneal Dialysis The peritoneal membrane has many tiny holes like a spaghetti strainer. Because of these tiny holes, the peritoneal membrane can work like a strainer or filter. The bad things like waste products or trash and extra water go through the holes in the strainer. The good things like the blood cells and most proteins in your blood are saved. The membrane is several layers thick and has many blood vessels. These blood vessels are full of the extra water, chemicals and waste products or trash that build up with kidney failure. The blood vessels bring the water, chemicals and waste products to the tiny holes in the membrane. The peritoneal membrane also has a space. This space, called the peritoneal cavity, is filled with germ-free dialysis fluid. As your peritoneal membrane fills with fluid, it stretches and gets bigger to make room for the fluid. When it is filled with fluid, your peritoneal membrane is like a water balloon that is stuffed in around the organs in your belly. Dialysis fluid stays (or dwells) in the belly, inside the peritoneal cavity, for a period of time. Depending on the type of dialysis you do and your dialysis schedule, the fluid dwells in the belly for as short as 30 minutes or as long as 8-10 hours. While the dialysis fluid is in the peritoneal cavity, dialysis is taking place. After the dialysis fluid has been in the peritoneal cavity for awhile, it becomes filled up with the waste products. When this happens, the waste products stop moving from the blood into the dialysis fluid. Think of a sponge that has soaked up too much water. After awhile, it can t soak up any more water. The sponge has to be squeezed dry before it can soak up any more water. The sponge is squeezed dry in peritoneal dialysis by draining the dirty dialysis fluid full of waste products out of the body. This fluid is not used again. The process starts over again when clean dialysis fluid is put into the peritoneal space and left in the belly to dwell. The peritoneal membrane looks like an empty balloon that has been tied at the end. The inside of the empty, tied-off balloon has a space that can be filled with air or water

18 Putting The Puzzle Together Choices Do I have to do anything to get ready for peritoneal dialysis? To be able to do peritoneal dialysis, the new dialysis fluid has to be able to get into the peritoneal space. Also, the dirty dialysis fluid full of waste products has to be able to drain out of the body A soft, flexible tube is put into the peritoneal space. This tube allows the dialysis fluid to flow in and out of the peritoneal cavity. The tube, called a peritoneal catheter, is usually put in during surgery. The bottom part of the catheter (about 3-5 inches) stays in the peritoneal cavity. The middle part of the catheter (about 1-2 inches) runs under the skin of your belly. The top part of the catheter (about 3-4 inches) stays outside the belly. The catheter looks like a short, soft, plastic straw. Because the catheter is soft, it can be taped flat against the skin. How often is peritoneal dialysis done? Peritoneal dialysis is usually done every day (or every night). When someone does peritoneal dialysis, they usually keep dialysis fluid in their belly all the time. The only time the belly is empty is when the dirty fluid is draining out of the peritoneal space. Having dialysis fluid in the belly all the time gives a gentle, around the clock dialysis treatment. This type of dialysis works more like healthy kidneys. Why does peritoneal dialysis take longer than hemodialysis? Peritoneal dialysis is much slower than hemodialysis. In hemodialysis, there is one thin, man-made membrane between the waste products in the blood and the dialysis fluid. In peritoneal dialysis, the waste products and water have a much longer trip. They have to move from: Inside the blood vessel Through the blood vessel wall Through the layers of the peritoneal membrane Into the dialysis fluid in the peritoneal cavity Even though dialysis is going on for most of the 24 hours, that doesn t mean that you are busy doing dialysis steps 24 hours a day. You will probably spend only 1-2 hours every day doing the actual dialysis steps. Why do people choose peritoneal dialysis if it takes longer than hemodialysis? The diet for peritoneal dialysis is usually not as strict. You may be able to have more fluids, protein, and potassium. Some people may be able to eat more salt. You can be more independent with peritoneal dialysis. Exchanges or nightly dialysis may be easier to fit into your daily life than hemodialysis treatments

19 Putting The Puzzle Together Choices You can do the peritoneal dialysis exchanges at home. It is easier to travel with peritoneal dialysis. For people wanting to do home dialysis, peritoneal dialysis is easier to learn than home hemodialysis. Also you don t need a partner to do peritoneal dialysis (unless you have a disability which prevents you from being able to learn or do the dialysis steps yourself). Some people who have problems on hemodialysis, such as poor vascular access, low blood pressure, cramps and always feeling tired, may feel better on peritoneal dialysis. Where are peritoneal dialysis treatments done? Peritoneal dialysis treatments are usually done in your home. You or your helper do the treatments. CAPD exchanges can be done at home, at work, at school. Exchanges can be done almost anyplace that is clean and indoors. Some nursing homes have learned how to do peritoneal dialysis for their elderly patients who need dialysis. Do I have to watch what I eat if I m on peritoneal dialysis? The diet for peritoneal dialysis is different than the diet for hemodialysis. You may be able to have more salt and fluids. You can eat more protein. You really NEED to eat more protein if you are on peritoneal dialysis because you lose protein during dialysis. You may be able to have more potassium. You may have to eat fewer calories. This is because sugar in the dialysis fluid can make you gain weight. SCHOOL Is there more than one kind of peritoneal dialysis? There are two kinds of peritoneal dialysis that are done at home. One is Continuous Ambulatory Peritoneal Dialysis (CAPD) and the other is Continuous Cycling Peritoneal Dialysis (CCPD). After looking at your lab tests, your body size, your lifestyle and your ability to do the dialysis steps, the doctors and nurses will talk with you about the method that will work best for you. Most units that offer peritoneal dialysis teach both CAPD and CCPD. Keep reading to find out about CAPD and CCPD. What is Continuous Ambulatory Peritoneal Dialysis (CAPD)? This kind of peritoneal dialysis is CONTINUOUS. There is no machine and you can walk around or be AMBULATORY. It is the most common type of PERITONEAL DIALYSIS. CAPD can be done in any clean place that has good lighting. The only equipment you need is the plastic bag full of dialysis fluid and the plastic tubing that attaches to the bag. The bag and tubing look like an IV bag and tubing. The steps for CAPD are simple, but they must be done right to prevent an infection

20 Putting The Puzzle Together Choices GETTING READY TO DO AN EXCHANGE NEXT - THE FILL STEP The supplies for the exchange are laid out on a clean table or counter. To make everything as clean as possible, the person puts on a paper mask, and washes his/her hands with a good anti-germ soap. Good hand washing before the drain and fill steps helps to prevent germs from getting into the peritoneal cavity. FIRST - THE DRAIN STEP After the dialysis fluid has been in the peritoneal cavity for 4-6 hours, sterile plastic tubing is attached to the catheter. The dirty dialysis fluid, full of waste products and water, is drained out of the peritoneal cavity. The dirty dialysis fluid drains by gravity from the peritoneal cavity Through the catheter and the plastic tubing Into the attached empty plastic bag It usually takes about minutes for the dialysis fluid to drain out of the peritoneal cavity. A plastic bag filled with new dialysis fluid is attached to the sterile plastic tubing. The new dialysis fluid runs by gravity from the bag Through the tubing and the catheter Into the peritoneal cavity It takes about 5-10 minutes for the dialysis fluid to fill the peritoneal cavity. The amount of fluid used to fill the peritoneal cavity depends on your doctor s orders. Most people fill themselves with 2 1/2-3 quarts of fluid each time. LAST - THE DWELL STEP After the new dialysis fluid has run into the peritoneal cavity, the catheter is sealed and the plastic tubing is removed from the catheter. The new dialysis fluid stays in the abdomen for 4-6 hours during the day and 8-10 hours during the night. During this time, the extra water, chemicals and waste products or trash move: From the blood Through the tiny holes in the membrane Into the dialysis fluid in the peritoneal cavity 30 31

21 Putting The Puzzle Together Choices The drain, fill and dwell steps make up the CAPD exchange. The drain and fill steps are done together. It usually takes minutes from the start of the first drain step to the end of the last fill step. Most people do 4-5 exchanges a day. Their exchanges are usually done around meal times and at bedtime. Many people eat, read a book, watch TV or take a short nap while their dirty dialysis fluid is draining into the empty drain bag. What is Continuous Cycling Peritoneal Dialysis (CCPD)? This kind of peritoneal dialysis is CONTINUOUS. There is a simple machine that works while you sleep to do the exchanges. An exchange is also called a CYCLE. The machine works during the night to do many short cycles or exchanges. Many people like to do this kind of PERITONEAL DIALYSIS. Because CCPD is done at night, they have more time to do other things during the day. Like CAPD, this kind of dialysis uses plastic bags filled with dialysis fluid and plastic tubing. The difference is that CCPD uses a machine called a cycler. The cycler machine has its own scale, heater, timer and clamps. The cycler measures and heats the dialysis fluid. The timer and clamps on the cycler direct the fill, dwell and drain cycles. Just like a traffic light tells cars when to stop and go, the cycler tells the dialysis fluid when to fill and drain. The CCPD treatment is done at night while you sleep. The treatment usually lasts 8-10 hours. During the 8-10 hours, the cycler machine does short exchanges every 1-2 hours. In the morning, at the end of the 8-10 hour CCPD treatment, some dialysis fluid is left in the peritoneal cavity. The fluid stays in the peritoneal cavity until it s time for that night s CCPD treatment. To get enough dialysis, many people on CCPD also have to do one day time CAPD exchange. The added CAPD exchange is usually done in the middle of the day. The steps for a CCPD treatment are not hard, but they must be done right to prevent an infection. BEFORE THE TREATMENT STARTS The plastic tubing is put on the cycler machine. Then the tubing is attached to plastic bags filled with new dialysis fluid. A large empty bag is also attached to the tubing to hold the dirty dialysis fluid that will drain out during the treatment. FIRST - THE DRAIN STEP At the beginning of a CCPD treatment, the catheter is connected to the plastic tubing. The dirty dialysis fluid that has been in the peritoneal cavity during the day is drained out. The dirty dialysis fluid drains by gravity from the peritoneal cavity Through the catheter and plastic tubing Into the large empty plastic bag It usually takes about minutes for the dialysis fluid to drain out of the peritoneal cavity

22 Putting The Puzzle Together Choices NEXT - THE FILL STEP The machine clamps the drain tubing and opens the fill tubing. This lets new dialysis fluid go into the peritoneal cavity. The dialysis fluid runs by gravity from the bag Through the tubing on the machine where it is measured and heated Through a long plastic tube and the catheter Into the peritoneal cavity It takes about 5-10 minutes for the dialysis fluid to fill the peritoneal cavity. The amount of fluid used to fill the peritoneal cavity depends on your doctor s orders. Most people fill themselves with 2 1/2-3 quarts of fluid each time. LAST - THE DWELL STEP After the new dialysis fluid has run into the peritoneal cavity, the machine clamps the tubing. The new dialysis fluid stays in the abdomen for 1-2 hours during the night and 6-10 hours during the day. During this time, dialysis is taking place. The drain, fill and dwell steps make up the CCPD exchange. The machine does many exchanges during the night while you sleep. What problems can happen with peritoneal dialysis? Peritoneal dialysis is a very gentle dialysis treatment. You are less likely to have problems like muscle cramps or sudden, low blood pressures that people on hemodialysis may have. Sometimes, if you take too much water off during a peritoneal dialysis treatment, you may have a low blood pressure and feel dizzy. The most serious problem that can happen with peritoneal dialysis is an infection of the peritoneal membrane. The peritoneal cavity has no germs. When germs get into the peritoneal cavity, they cause a bad infection. This infection is called peritonitis. Most germs that cause peritonitis can be treated with antibiotics. But, there are some germs that are very hard to kill with antibiotics. If you do get peritonitis, you GERMS will feel sick, have a fever and have stomach pain. Not only does peritonitis make you sick, it can change the way your peritoneal membrane works. Peritonitis can cause scarring of your peritoneal membrane. The more often you get peritonitis, the more chance that you will get scars on your membrane. When this happens, your peritoneal membrane is not able to filter or strain waste products and water. People who get scars on their peritoneal membrane may not be able to keep doing peritoneal dialysis. They may have to switch to hemodialysis. The good news is that most peritonitis can be prevented!!! 34 35

23 Putting The Puzzle Together Choices Being careful to follow the dialysis steps when you do an exchange helps to prevent most peritonitis infections. A big part of learning how to do peritoneal dialysis is learning how to prevent peritonitis. When you learn how to do peritoneal dialysis, you will practice the steps until you can do them right. You will also learn: How to know if you have peritonitis. Who to call if you think you might have peritonitis. Who do I talk to if I want to learn to do peritoneal dialysis? If you want to learn to do peritoneal dialysis, talk to your doctor. The peritoneal dialysis nurse and the doctor will look closely at your medical condition, your lab work, your lifestyle and the reasons you want to do peritoneal dialysis. They need to make sure that peritoneal dialysis is a good dialysis choice for you. The doctor and nurse also need to make sure that you re willing to follow a home dialysis schedule. Where can I learn to do peritoneal dialysis? Many facilities have special classes to teach people how to do peritoneal dialysis. If your facility doesn t have peritoneal dialysis classes, your doctor can send you to a facility that does offer the classes. Facilities that offer peritoneal dialysis will have one or more home training nurses. The home training nurses will teach you everything you need to know to safely do peritoneal dialysis at home. They will also: See you when you come in for clinic visits every 1-3 months. Call you on the phone to make sure you re doing ok. Help you with any problems you may have with your home dialysis treatments. What will I learn in the peritoneal dialysis classes? When you learn how to do peritoneal dialysis, you learn how to do the dialysis steps the right way and at the right time. The steps for doing peritoneal dialysis are not hard to learn. The most important part is learning to do the steps the same way, every time. The steps are usually written down on a piece of paper. Having the steps written down helps you remember to do the steps the right way, in the right order. Your home training nurse will send these and other helpful reminders home with you. Because you will need to know how to take care of yourself at home, the classes will teach you other things besides the dialysis steps. In the classes you will also learn about: Your lab work, what it means and how to keep track of it. Your diet. Your medicines and how to take them. Who to talk to about bills and expenses. How to handle simple problems at home. How and when to contact a nurse or doctor if you are having a medical or dialysis problem. PD Steps 36 37