An Interactive Guide for Dialysis Patients ACKNOWLEDGEMENTS Special Thanks to all the patients, care givers and professionals who contributed to the development of the “Navigating the Dialysis System” book. Derek Forfang, Patient Leadership Committee Chair Christine Hoglund, Patient Leadership Committee Joe Tobias, Patient Leadership Committee Dianne Tobias, Patient Leadership Committee Sinaletinae Leaupepe, Patient Leadership Committee Gary Penders, Patient Leadership Committee Lenora Coss, Patient Leadership Committee Harvey Cooper, Patient Leadership Committee Lawrence Mau, Patient Leadership Committee Shannon Moore, Patient Leadership Committee Julie Roe, Patient Leadership Committee Mark Pendleton, Patient Leadership Committee Margaret Farr, Patient Leadership Committee Robin Miller, Patient Leadership Committee Kenneth Johnson, Patient Leadership Committee Denise Mertz, Patient Leadership Committee Peter Traub, Western Pacific Renal Network #17 Allison Kregness, Western Pacific Renal Network #17 Additional Acknowledgements Southeastern Kidney Council, Inc., Network #6 Zenith Printing “Navigating the Dialysis System” Illustration By Emma Arnold, Western Pacific Renal Network #17 Index A. Introduction…………………………..Tab A B. What is Dialysis?.............................Tab B C. Treatment Options ………………….Tab C D. Accesses for Dialysis ……………...Tab D E. The Dialysis Diet …………………….Tab E F. Fluid Control on Dialysis…………...Tab F G. Dialysis Medications ………………..Tab G H. Dialysis Lab Tests …………………...Tab H I. Glossary………………………………..Tab I J. Dialysis Patient Resources ………...Tab J Introduction This book has been created for you by the volunteer pa ents of the Pa ent Leadership Commi ee of Western Pacific Renal Network also known as ESRD Network #17. The Network is a not-for-profit company that contracts with the Centers for Medicare & Medicaid Services (CMS) to bring the end-stage renal disease (ESRD) program to its geographic area. The Network is made up of renal nurses, social workers and data specialists with many years of experience working with people who receive ESRD treatment. The main focus of the Network is to improve pa ent care. The Pa ent Leadership Commi ee (PLC) is comprised of a group of volunteer pa ents who represent the Network #17 area which covers the 45 northern most coun es of California, the state of Hawaii, the US Territories of American Samoa and Guam, and the US Commonwealth of Saipan. "Naviga ng the Dialysis System" was created by pa ents not as a text book on dialysis and End Stage Renal Disease, but as an overview of facts about several ESRD topics so you and/or your family members/caregivers can have an in-depth meaningful conversa on with your Dialysis Care Team about issues specific to your care. You will find informa on and a list of ques ons in each sec on that you can discuss with your doctor, renal nurse, social worker, and die an. We have also included an area a er each chapter for you to take notes or write down your own ques ons. You need to become an expert and an advocate for yourself in caring for your ESRD. It has been found that pa ents who are engaged in their own care live longer and have a be er quality of life. We discuss in this book, many different treatment types so that you can decide what the most appropriate op on for you would be. We cover other very important issues in dealing with your kidney disease like diet, lab work, fluid management, medica on, and determining what is the best and safest vascular access choice for you. There are mes it does and will feel like we are not in control of our bodies anymore and we are vic mized by this disease, but we don't need to be vic ms. Yes, things have changed. But remember you are s ll the Captain of your ship. You are the KEY player on your Care Team so grab the wheel and take control as we “navigate” on this journey together. Your Network #17 Pa ent Leadership Commi ee Team Derek Forfang PLC Chair 09/28/2013 What is Dialysis? Including Questions for Your Patient Care Team Developed by the Patient Leadership Committee/Mark Pendleton & Western Pacific Renal Network #17 What is Dialysis? Dialysis is the artificial replacement for lost kidney function. It's the process of eliminating waste & unwanted water from the blood that normally our kidneys do naturally. Some people, however, may have failed or damaged kidneys which cannot carry out the function properly and they may need dialysis. Dialysis is used for patients who have become ill or have acute kidney failure (temporary loss of kidney function), or for the patients who permanently have lost kidney function (chronic kidney disease). When we are healthy, our kidneys regulate our body levels of fluid (water), minerals, and remove waste. Dialysis cannot correct the failed kidneys, but can help replace some vital functions, such as waste and fluid removal. Approximately 7.5 liters (7500 ml) of blood are filtered by a healthy person's kidneys each day. We couldn't live if waste products weren't removed from our kidneys. People whose kidneys either don't work properly or not at all, experience a buildup of waste in their blood. Without dialysis the amount of waste products in the blood would increase and eventually reach levels that would cause serious illness and hospitalization. What Type of Dialysis is Available for Me? There are two main types of dialysis; Hemodialysis & Peritoneal Dialysis. (aka: PD, CAPD, CCPD) Hemodialysis: This process allows blood to circulate through a special filter (dialyzer) outside of your body through tubing connected to your dialysis access. Your blood is slowly pumped from your body into the dialyzer where waste products and extra fluid are removed. The filter does what the kidneys would normally do and then the blood is returned to your body. Hemodialysis, on the average, lasts about 3 to 4 hours per treatment, three times per week at a certified dialysis center or in your home. The duration of each session depends on the results of your lab values and how much fluid weight you gain between your dialysis treatments. Your dialysis treatment is a prescription, ordered by your doctor, along with medications and diet. It is a lifetime treatment unless you receive a kidney transplant in which case your dialysis treatments will stop and your new kidney will take over. Peritoneal Dialysis (PD) A sterile (dialysate) solution is run through a tube that is placed in your abdomen where the peritoneal membrane acts as the kidney. This is called an “exchange”. The dialysis solution is left in your abdomen for the prescribed amount of time so that it can absorb waste products and extra fluid. It is then drained out through a tube and discarded as illustrated below. The abdomen is the area where peritoneal dialysis uses the natural filtering ability of the peritoneal membrane, internal lining of the abdomen, to accomplish the continuous dialysis treatment process. PD uses the lining of the abdomen as a filter of waste products and extra fluid from the blood. This dialysate exchange is generally repeated several times during the day and performed at home. The elimination of extra fluid (ultrafiltration) is done by adding a high concentration of glucose (sugar) to the dialysis solution. The glucose causes extra fluid to move from the blood into the dialysate. Therefore a larger quantity of fluid is then drained and the “exchange” is repeated again. Before having PD, the patient needs to have a small surgical procedure to insert a catheter into the abdomen. Although PD takes more time than hemodialysis, the net effect in terms of total waste product and fluid removal, is about the same. PD is ideal for patients who may find hemodialysis too exhausting or restrictive. Summary Although dialysis helps patients whose kidneys have failed, it's not as efficient as a normal kidney. Consequently, patients on dialysis need to be careful about watching their diet and the amount of fluid they drink. Often patients on dialysis can work and lead normal lives. Following your treatment as prescribed by your Nephrologist, dialysis schedule, medications, diet and fluid intake will determine how well you do with the dialysis procedure. This booklet will provide you with questions to ask your dialysis team and also list the many resources available to dialysis patients. Do not be afraid to ask questions and get the answers you need. Assisting in the quality care provided to all dialysis patients is the mission of this project. Questions to ask my Nephrologist & Dialysis Team 1. Does the dialysis treatment hurt? 2. Why do I have to weigh myself before and after treatment? 3. Can I have someone sit with me during my treatment? 4. Can I bring my own pillow or blanket to the facility? 5. Who will start my dialysis treatment and how will I be connected to the dialysis machine? 6. How will I feel during the dialysis treatment? 7. Can I eat or drink during my dialysis treatment? 8. What should I do if I don’t feel well during treatment and how do I tell someone? 9. Can I use the restroom if necessary? 10. How will I feel after my dialysis treatment? 11. What should I do if my fistula or graft starts bleeding after treatment and I am at home? 12. If my dialysis facility is closed, who do I call and where do I go in an emergency? 13. What drugs do I receive during my dialysis treatment & why? 14. Can I lead a normal life on dialysis? Notes Notes Additional Information Nephrologist______________________________________________ Phone Number____________________________________________ Dialysis Clinic____________________________________________ Phone Number____________________________________________ Emergency Contact________________________________________ Developed by Patients for Patients Western Pacific Renal Network 505 San Marin Dr. Suite A-300 Novato, CA 94945 (415) 897-2400 Toll Free 1-800-232-3773 www.esrdnet17.org Supported by the Centers for Medicare and Medicaid Services (CMS) Contract #HHSM-500-2013-NW017C. The opinions and conclusions expressed are those of the authors. They do not necessarily reflect CMS policy. Treatment Options Including Questions for Your Patient Care Team Developed by the Patient Leadership Committee/Lenora Coss & Western Pacific Renal Network #17 What Are Treatment Options? When your kidneys fail, you need treatment to replace the work of healthy kidneys to survive. If you choose to receive treatment, your choices are hemodialysis, peritoneal dialysis, or kidney transplant. There is no one option that is right for everyone. There are many things to consider when looking at your options, including but not restricted to, your overall health and physical abilities, your support system, living arrangements, lifestyle, and personal preferences. You will find the one that is right for you by asking questions of the people that are taking care of you. You should try to learn as much as you can about each treatment option before you make your choice. Many people change to another option after trying one and deciding that another treatment would work better for them. Hemodialysis If you choose hemodialysis (HD), the process involves cleaning your blood using a filter called a dialyzer. Blood leaves your body through an access, either with the creation of an Arterio-Venous Fistula (AVF) or an Arterio-Venous Graft (AVG) surgically placed in your arm, or a Central Venous Catheter (CVC) placed in your chest. The blood then enters the dialyzer through tubing called lines, where it is cleaned and then returned to your body through your access. This process continues for the amount of time prescribed by your Nephrologist. You can have hemodialysis done in a dialysis center, typically 3 times a week; or you can do it at home, usually with the help of a family member or caregiver. Also, there are different types of hemodialysis both at home and in-center; standard hemodialysis, nocturnal hemodialysis, and short daily hemodialysis. This book will briefly describe each one of these options. Ask your Patient Care Team for additional information. How often and how long your treatments will be, depends on your individual needs and the prescribed orders by your Nephrologist. Treatments can be adjusted as your needs change. This process of review occurs with all types of dialysis treatments. Your Patient Care Team in all types of dialysis will consist of doctors, nurses, dialysis techs, social workers, and dietitians. Standard Hemodialysis Standard hemodialysis, most often done in-center, is usually done three times per week, for 3 to 4 hours. In-center, certified hemodialysis technicians usually put the access needles in, start and monitor the treatments. Registered nurses assess patients, monitor patients during treatments, and give medications. Standard hemodialysis, if done at home, would usually require the help of a partner or caregiver. Nocturnal Hemodialysis Nocturnal hemodialysis is done either in-center or at home, lasting 6 to 9 hours, while you sleep. If done in-center, the same staffing would be monitoring your treatment as in standard dialysis. If done at home, you would need a fully trained family member or caregiver. Short Daily Hemodialysis Short daily hemodialysis treatments usually take 2 to 3 hours, 5 to 7 days a week. This kind of dialysis is most commonly done at home. There are fewer side effects than with standard hemodialysis, such as headaches, cramps, or nausea. However. there may be insurance and payment issues with short daily dialysis. Home Peritoneal Dialysis Peritoneal dialysis (PD), removes bodily waste products through the blood vessels in your abdominal lining (peritoneum). This is done with dialysate that flows into and out of the abdomen. You can give yourself treatments at home, at work, or while traveling. You may be able to use fewer medications and eat a less restrictive diet than you can on hemodialysis. You need manual dexterity and the ability to care for yourself or a reliable caregiver. A team will be available to instruct and educate you and will monitor your progress to ensure that the prescribed treatment is working properly. Access is through a thin soft plastic catheter usually placed near your belly button by a surgeon under general or local anesthetic. You’ll be taught how to care for the catheter, do all the procedures, and how to take care of yourself. In Continuous Ambulatory Peritoneal Dialysis, (CAPD), dialysate is exchanged manually several times during the day in any clean place. In Continuous Cycling Peritoneal Dialysis (CCPD)/ Automated Peritoneal Dialysis (APD), a machine called an automated peritoneal cycler performs 3-5 automated exchanges at night while you sleep. You can do one or the other or a combination of both. Peritoneal dialysis is done every day. With arrangements and assistance from your training facility, supplies needed for peritoneal dialysis will be delivered to your home. Which type of Home PD is best for you, depends on your lifestyle, personal preferences and medical condition. Home Hemodialysis (HHD) Along with treatment options available, home hemodialysis can be the treatment of choice for some patients. At home, you may be better able to fit your treatments into your daily schedule. There are three types of home hemodialysis, as described on page three of this booklet, which can be accomplished at home as well. They are as follows: 1. Conventional home hemodialysis 2. Short daily home hemodialysis 3. Nocturnal hemodialysis The clinic will provide a machine for use in the home or help the patient get a machine from a supplier. The patient does not have to buy the machine. Supplies, such as dialysis solution, will be delivered to the home once or twice a month. During training, the patient learns to: Prepare equipment and supplies Place the needle in the vascular access Monitor the machine Check blood pressure and pulse Keep records of the treatments Clean the equipment and the room where dialysis is done Order supplies Training often takes 3 to 8 weeks. The training staff makes sure the patient is confident about performing each task before doing home HHD. Someone from the clinic will be available to answer phone calls 24 hours a day. Some programs also monitor treatments over the Internet. The patient returns to the clinic once a month to see the Nephrologist, dialysis nurse, social worker and dietitian. A blood sample will be tested to ensure the HHD treatments are working and to detect any problems, such as anemia or high potassium levels, that should be treated. Home Hemo continued: Conventional Home Hemodialysis In recent years, many people have found that doing HD at home has many benefits. New dialysis machines are smaller and easier to use, making home HD more practical. Some machines may require special wiring or plumbing changes in the home, but others use standard household outlets. The home must have room for the HD machine, supplies, and in some cases a water purification machine. The patient starts learning to do treatments at the clinic, working with a dialysis nurse. Most people who do home HD have helpers who train with them at the clinic. The helper can be a family member, neighbor, or close friend. Some programs do not require a helper if the patient can do all the tasks alone. Short Daily Hemodialysis Some people dialyze at home during the day and because they do it every day or at least five or six times a week, they do not have to dialyze as long. They can finish in 2 or 3 hours, saving even more of their time as they do not have to travel to and from the dialysis clinic. Daily treatments keep blood pressure more level than standard HD. Nocturnal Hemodialysis Some people dialyze at night while they sleep, freeing up the whole day for other activities. This gentle treatment is easier on the patient's dialysis access and heart. A longer treatment time for nocturnal HD allows for a slower blood flow rate. Because the treatments are longer, they remove more phosphorus and other wastes products than shorter treatments can. Nocturnal HD is done from 3 to 6 nights per week. Kidney Transplant In a transplant, the surgeon places a functioning kidney from a living donor or a cadaver kidney from a deceased donor into a person whose kidneys are no longer functioning. Tests starting with blood typing and tissue typing are run to determine if a donor kidney is compatible with you. Tests are also done for the safety of a living donor. If there is no living donor you can be placed on a waiting list. Your doctor will refer you to a transplant center or you may choose a center from your insurance company’s list of preferred providers. Your eligibility for a transplant will be evaluated including your Donor health, your compliance with your current functioning kidneys treatment, and your support system. It is important to stay in touch with your transplant team and be prepared to respond to your transplant center at a moment’s notice if you are called. During a transplant, a surgeon makes an incision and places the new kidney in the lower abdomen. The blood vessels of the new kidney are attached to the blood Recipient Non-functioning kidneys vessels in your lower abdomen just above one of your legs. The ureter (the tube that links the kidney to the bladder) is connected to your bladder. The surgery is performed by a trained transplant surgeon under general anesthesia and takes on average from 3 to 4 hours. After a transplant, you will spend several days to a week in the hospital recovering. You will be taught what is necessary to care of yourself and your new kidney including such things as; diet, medications and wound care. During the first 4-6 weeks after discharge you will be seen frequently by your transplant team. You will also have some restrictions in what you are allowed to do so you will need help at home. You will be taking medications called immunosuppressants to keep your immune system from attacking your new kidney and your body from rejecting the kidney. It is important to take your medications as prescribed and to follow your doctor’s instructions. Some of these medications you will be taking for the rest of your life. These medications are very strong and have some very pronounced side effects. CONSERVATIVE TREATMENT You and your doctor decide what will be your conservative treatment if you have chosen not to do dialysis or a transplant. It is important to be aware that your life expectancy will be only a few weeks, the exact length of time will depend on many factors. Before making this or any decision it is very important to get all the information you need. The decisions made will depend on your current health and your expectations regarding quality of life. A good way to get the information you need is to ask your doctor. As you think of questions write them down and then you won’t forget during your next scheduled visit. Advance Healthcare Directives Today's treatments for kidney failure allow you to participate in life and enjoy your family and friends. Dialysis is a life-saving treatment, but it is not a cure. Looking ahead can be overwhelming and scary. It helps to take control of your care by telling your healthcare providers and your family about your wishes and the type of care you want as your disease progresses. This will also make it easier for them to make decisions for you if you become too sick to make them yourself. All of these decisions are called "advance care planning" which is simply planning for your care before you need it. Your dialysis facility staff is ready to work with you to put some of these decisions in writing so you can have peace of mind about your future. Questions to ask my Nephrologist & Dialysis Team 1. I don’t like needles. Does that mean I can only do PD? 2. Can I change treatment types if I don’t like my first choice? 3. Will someone evaluate my home to see if I can do home dialysis? 4. How would I get help at home from a nurse or dietitian? 5. Can I travel if I choose any type of dialysis? 6. Does every dialysis facility provide all the same options? 7. Do all the treatment types cost the same? 8. Would my diet be the same on each treatment type? 9. Can I still work if I do any of the treatments? 10. Can I keep my same doctor if I change treatment types? 11. How do I get referred for a transplant? 12. Can I choose any transplant center? 13. What do I have to do to get on the transplant “waitlist”? 14. What happens if I choose not to continue with dialysis? 15. How do I learn about “Advance Healthcare Directives” and what does that really mean to me and my family? Notes Notes Additional Information Dialysis Social Worker______________________________________ Phone Number____________________________________________ Nephrologist______________________________________________ Phone Number____________________________________________ Dialysis Clinic____________________________________________ Phone Number____________________________________________ Developed by Patients for Patients Western Pacific Renal Network 505 San Marin Dr. Suite A-300 Novato, CA 94945 (415) 897-2400 Toll Free 1-800-232-3773 www.esrdnet17.org Supported by the Centers for Medicare and Medicaid Services (CMS) Contract #HHSM-500-2013-NW017C. The opinions and conclusions expressed are those of the authors. They do not necessarily reflect CMS policy. Accesses for Dialysis Including Questions for Your Patient Care Team Developed by the Patient Leadership Committee & Western Pacific Renal Network #17 Choosing the Right Access for Your Dialysis Treatments You may have been told that you need dialysis, so what does this mean exactly? Dialysis is one type of treatment that cleans the blood when the kidneys are not able to. During a hemodialysis treatment a machine pumps blood away from your body through a tube to a filter that cleans your blood and then returns it to your body through another tube. Another option is to use your own abdominal wall (inside body lining) as a filter, a process called peritoneal dialysis. What are the different options for a permanent access? If you choose hemodialysis, the process requires an access to your blood stream (vascular access). An Arterio-Venous Fistula (AVF) is created from your own blood vessels or an Arterio-Venous Graft (AVG) is surgically placed in your arm. You may have a Central Venous Catheter (CVC) placed in your chest or along side of your neck area if you need dialysis immediately. To be able to achieve adequate cleansing of your blood and to keep you at your healthiest, it is important that the access you have for hemodialysis is the right one for you. For optimal results it is important to be evaluated for an access before you start dialysis. A surgeon who has experience in placing fistulas is your best choice for a successful access. “Vessel Mapping” is a great way to find out if you are a candidate for a fistula. This is a procedure performed with a device that is used outside your body to take “pictures” of where your blood vessels are and see if they are adequate size to create a fistula. If you have a catheter or AVG, ask your kidney doctor if you are a candidate for an AVF. Arterio-Venous Fistula An Arterio-Venous Fistula, often referred to as a fistula or an AVF, is a surgical connection between one of your own veins and an artery. The blood flow from the artery allows the vein to strengthen and become large enough for dialysis. On average, it can take six to eight weeks for this type of access to become ready to use for treatment. A fistula is the access most often recommended for hemodialysis patients. The advantages of an AVF are longer life, fewer infections, and fewer follow-up procedures. External View of AV Fistula Internal View of AV Fistula Arterio-Venous Graft With a Arterio-Venous Graft (AVG), a flexible tube is used to connect one of your arteries to a vein. An AVG will take about 2 to 4 weeks to heal before it can be used for dialysis. Some important facts to consider about AVG’s are that they may not last as long as a fistula (3-5 yrs), and they can become infected and clot more often than a fistula. Additionally, they may need more procedures to correct complications. A graft doesn’t need to develop as long as a fistula does, so it can be used for dialysis sooner after placement, often within 2 or 4 weeks. External View AV Graft Internal View of AV Graft Central Venous Catheter Another vascular access choice that is not considered a permanent access is called a Central Venous Catheter (CVC). A catheter is a small flexible tube that is inserted into a large vein in your neck through your chest. The top of the catheter is outside your body for access during dialysis and the tip of the catheter is placed near your heart. A catheter can be used right away and seems less painful than other access options, but a catheter puts you at greater risk for serious complications (infection and clotting) than an AVF or AVG. Peritoneal Dialysis Catheter In peritoneal dialysis, dialysis fluid (called dialysate) is infused into the abdominal cavity (called the peritoneal cavity) through a catheter. The fluid is held within the abdomen for a prescribed period of time; this is called a “dwell time”. The lining of the abdomen (the peritoneum) acts as a membrane to allow excess fluids and waste products to pass from the bloodstream into the dialysate. When the dwell is completed, the "used" dialysate can then be drained out of the abdomen (called an exchange) into a sterile container (for CAPD) or into a shower or bathtub (for CCPD). This used fluid contains the excess fluid and waste from the blood, which is usually eliminated in the urine. The peritoneal cavity is then filled again with fresh dialysate. Vascular Access Comparison AV Fistula AV Graft AVF AVG 6-8 weeks 2-4 weeks What Vascular Access is considered the “Gold Standard”? Will I have surgery to place my vascular access? Can my access be used right after surgery? Can all accesses be used for dialysis? Which access can become infected most frequently? Which vascular access has the least infections? Which vascular access has the most complications? Which accesses allow me to shower or take a bath? Which vascular access will give me the best dialysis treatment? Which vascular access is the safest? Which vascular access will make me feel the best? Central Venous Catheter CVC Important Points to Consider When Choosing A Vascular Access Surgeon For Your Fistula, bring this list of questions with you to the appointment for discussion. With AVF being the “Gold Standard” it is important to know the following: 1. How many fistulas has the surgeon placed in the last three to six months? 2. How many of the fistulas placed by this surgeon in the last year are working well? 3. How many fistulas did the surgeon place compared to grafts and catheters? 4. What type of pre-surgical assessment does the surgeon do? 5. Does the surgeon do vessel (vein) mapping? 6. Does the surgeon map the arteries and veins in both arms? 7. Does the surgeon do the vessel mapping him or herself or send patients to an ultrasound lab? 8. If the surgeon says you are not a candidate for a fistula, get a second opinion. Do not hesitate to ask your Nephrologist and/or the Vascular Surgeon any of the questions above. The quality of your life depends on the vascular access you receive. You have options when it comes to choosing how you will receive hemodialysis. You can educate yourself about your options and with your doctor to choose the best vascular access for you. It will be challenging to apply these suggestions. But remember: It is YOUR life and YOUR access, and the rewards of choosing the best possible vascular access will be with you for many years to come! Get all the facts before making this decision! Vascular Access Questions to ask my Nephrologist & Surgeon 1. Why is vascular access for dialysis so important? 2. What are the different types of accesses for dialysis? 3. How do I choose the right access and which one is the safest for me? 4. When should I get my dialysis access placed? 5. What is vessel mapping and why would I need it? 6. Who places my dialysis access and where is it done? 7. After my access surgery, will there be much pain? 8. How do I take care of my dialysis access after surgery? 9. Do I have the right to choose my own surgeon? 10. Can I have more than one access at a time? 11. If I have a catheter and it is working, why can’t I keep it? 12. If I don’t like my fistula or graft, can I change back to a catheter? 13. If I choose home dialysis, which type of vascular access would be the best for me? 14. Can my family participate in this decision with me? 15. How are the different types of dialysis accesses paid for? Notes Notes Additional Information Vascular Access Surgeon___________________________________ Phone Number____________________________________________ Nephrologist______________________________________________ Phone Number____________________________________________ Dialysis Clinic____________________________________________ Phone Number____________________________________________ Developed by Patients for Patients Western Pacific Renal Network 505 San Marin Dr. Suite A-300 Novato, CA 94945 (415) 897-2400 Toll Free 1-800-232-3773 www.esrdnet17.org Supported by the Centers for Medicare and Medicaid Services (CMS) Contract #HHSM-500-2013-NW017C. The opinions and conclusions expressed are those of the authors. They do not necessarily reflect CMS policy. The Dialysis Diet Including Questions for Your Patient Care Team Developed by the Patient Leadership Committee & Western Pacific Renal Network #17 Why is the Renal Diet so Important? End Stage Renal Disease (ESRD) is a condition where the kidneys will lose total function over time. These organs are important because its job is to cleanse the body of wastes and also regulate the blood pressure. The term "renal" refers to the kidneys in the body and when people think about these organs, they normally don’t realize how hard they work to maintain our lives. For patients suffering from ESRD, one of the greatest challenges is to learn a new way of preparing meals and eating the proper diet. The more you learn about the function of the kidneys in general, and your condition in particular, the better you will be able to understand exactly how you need to adjust your diet in order to eat properly with the correct protein intake to make yourself feel better. One of the most important things to know when starting on your new renal diet is to understand what the kidneys actually do. The kidneys function as a waste removal system, ridding the body of excess potassium, sodium, phosphorous, fluids and other chemicals harmful to your system. Because ESRD represents the end of the kidneys' ability to function as well as it should, it is essential that you limit your intake of foods containing sodium and potassium and fluid. Your body won't have to work as hard between your dialysis treatments and the renal diet will reduce the harmful buildup of toxins in your system. Your dialysis treatment will be easier and you will feel better if you maintain the proper diet and fluid regimen. Every dialysis facility has a Renal Dietitian who is available to you and/or your family for questions, instruction, educational materials, and resources. The Renal Dietitian will review your lab tests to see how well you are doing with your renal diet and will help you every step of the way. What You, Your Dietitian & Dialysis Team Will Monitor Water intake (fluid) is discussed in a separate booklet in this series so we concentrate on the toxins that will build up in your body with ESRD that are particularly important to monitor. Your dietitian will review all your lab tests with you monthly to keep you well informed and educated. The following are four of the most important elements in your body that can affect your ESRD more quickly than others. Let’s take a look at each one of them to better your understanding. Protein Before making any changes to your diet, make sure you discuss them with your doctor or dietitian. Diet plays an important role in the management of kidney disease. The diet your physician will ask you to follow will be based upon your level of kidney function, your body size, and any other medical conditions you may have. The renal diet will be helpful in your getting the most benefit from your dialysis treatments. Protein is needed to maintain muscles and aid in building resistance to infections. It also helps repair and replace body tissue. As your body breaks down protein foods, waste products called urea nitrogen are formed. With ESRD, urea builds up in the bloodstream much quicker. Eating too much protein may cause too much urea and this will make you feel sick and not want to eat. Eating the right amount of protein along with dialysis may be helpful in reducing your blood urea nitrogen levels. Reducing protein intake will be monitored closely by your doctor and dietitian. Protein continued: Examples of foods high in protein are: • Meat • Poultry • Milk Products • Eggs Foods low in protein includes the following: • Fresh beans (pinto, kidney, navy) • Grains • Vegetables You need both high quality and low quality protein in your diet. Your dietitian and doctor will determine how much protein should be in your diet. Sodium (Salt) Sodium or salt is needed by your body for many functions such as controlling muscle contractions, balancing fluids, and controlling blood pressure. Healthy kidneys remove excess sodium in the urine. As kidney function fails, sodium and fluids may accumulate in your body. Fluid retention may cause swelling in your eyes, hands, and/or ankles. With ESRD your kidneys no longer have the ability to remove fluid from your body except for instance, through sweating. Too much fluid can put stress on your heart and lungs and make your dialysis treatments uncomfortable. Large fluid weight gains removed on dialysis due to water intake can create muscle cramps and low blood pressure. To keep your sodium level in balance, your doctor, dietitian and dialysis team may ask you to limit the sodium in your diet. Sodium continued: Foods high in sodium include the following: • Table salt • Bouillon cubes • Potato chips • Nuts • Bacon • Cold Cuts • Cheese • Canned, dehydrated, or instant soup • Canned vegetables • Processed dinner mixes (such as Hamburger Helper, Rice-a-Roni) Low sodium alternatives: • Season with a variety of spices like garlic, oregano and use lemon Do not add salt while cooking or at the table Potassium (K+) Potassium helps to keep your nerves and muscles, especially your heart, working properly. Potassium is a mineral and can be found in many foods. The kidneys are responsible for helping to keep the correct amount of potassium in your body. It can be very dangerous if your potassium level is too high. Too much potassium can make your heart beat irregularly or even stop without warning. It is important to remember that almost all foods contain potassium. Serving size will determine whether foods are a low, moderate, or high potassium level. Important to remember; A large serving size of a low potassium food can become a high potassium food. Your dialysis dietitian will provide you with a more complete list of foods that are high and low in potassium. Potassium continued: Foods that are high in potassium include the following : Fruits & Vegetables (not approved by your dietitian) Bananas Broccoli & Brussels Sprouts Chocolate Oranges Potatoes Coffee (limit to 2 cups per day) Cantaloupe Tomatoes Salt Substitute (read labels carefully) Prunes, Mushrooms, Bran & Bran products Nuts & Dried Fruit Foods that are low potassium include the following: Apples Beans (green or wax) Rice Grapes Cucumber Noodle Pears Watermelon, Lettuce (watch fluids Cereal Bread & Bread products Cherries Phosphorus Phosphorus is a mineral that works with calcium to keep your bones healthy and strong. Phosphorus is needed by the body for building and maintaining bones, teeth, normal nerve and muscle function. When kidney function fails, the body has a difficult time keeping phosphorus and calcium in balance. As a result of this imbalance, the body cannot get rid of excess phosphorus (phosphorus levels increase) and the body cannot take in enough calcium (calcium levels decrease). In an effort to try and correct this imbalance, the body will “steal” calcium from the bones, which makes the bones weak and more subject to breaking. Problems associated with high phosphorus levels include itchy skin, bone and joint pain, and brittle bones. Important to remember; A large serving size of a low phosphorus food can become a high phosphorus food. If your phosphorus level remains high, your doctor may prescribe a phosphate binder for you to take. This medication will bind with the phosphorus in the food you eat and prevent phosphorus from being absorbed in the body. It is important that you take this medication exactly as instructed by your doctor and with your meals, not before or after. High phosphorous levels can cause calcium and phosphorus to form deposits in the heart, lungs, joints and skin that affect organ functioning. Phosphorus is in the food you are eating and the binders will work accordingly with the food. Phosphorus continued: Foods that are high in phosphorus include: • Cola Drinks • Peanut Butter • Cheese • Sardines • Chicken/Beef Liver • Nuts • Caramels • Beer • Ice Cream Foods that are lower in phosphorus include: Broccoli • Non-dairy Milk Substitutes • Sherbet • Non-cola Sodas • Zucchini Squash • Hard Candy Follow Your Diet Like You Follow Your Heart & You Can’t Go Wrong! Questions to ask my Dietitian & Dialysis Team 1. What is a “Renal” diet? 2. How much food can I eat everyday? 3. Can I afford a “Renal” diet? 4. How do I measure the amount of food to eat? 5. Will I lose weight on the diet? 6. I’m Diabetic. Is my “Renal” diet the same? 7. How will I know if I eat too much Potassium? 8. How will I know if I eat too much Sodium (Salt)? 9. How can I tell the difference between “water” weight gain and regular weight gain? 10. What does “Dry Weight” mean? 11. Will I feel better if I follow the “Renal” diet? 12. When do I take my phosphorus binders; before, with or after meals? 13. Who will help me and/or my family to learn the diet? Notes Notes Additional Information Renal Dietitian____________________________________________ Phone Number____________________________________________ Nephrologist______________________________________________ Phone Number____________________________________________ Dialysis Clinic____________________________________________ Phone Number____________________________________________ Developed by Patients for Patients Western Pacific Renal Network 505 San Marin Dr. Suite A-300 Novato, CA 94945 (415) 897-2400 Toll Free 1-800-232-3773 www.esrdnet17.org Supported by the Centers for Medicare and Medicaid Services (CMS) Contract #HHSM-500-2013-NW017C. The opinions and conclusions expressed are those of the authors. They do not necessarily reflect CMS policy. Fluid Control on Dialysis Including Questions for Your Patient Care Team Developed by the Patient Leadership Committee/Harvey Cooper & Western Pacific Renal Network #17 Why is Fluid Intake so Important on Dialysis? When our kidneys fail and we begin a course of treatment on dialysis, it is very important to monitor the amount of fluid to take into your body. Excess fluids can create many problems for your health as your kidneys are no longer able to get rid of the fluid as urine. Your weight will increase before dialysis and perhaps your feet/ankles will swell. You may also become short of breath or the dialysis treatment may be a little less comfortable. Controlling Fluids A dialysis patient finds it harder to keep the right fluid balance when their kidneys no longer work. Eating too much salt (sodium) will make you thirsty and when you drink, your body cannot get rid of the extra fluid because your kidneys no longer work. One important aspect of the dialysis treatment is to take off extra fluid your kidneys can no longer remove. This is important, because if you have too much fluid, you may develop: Fluid buildup in you body called edema (eh-dee´-ma) Headaches and low energy Shortness of breath from fluid in your lungs Heart problems High blood pressure The goal of controlling your fluid intake is to help you feel comfortable before, during and after your dialysis treatment. Peritoneal dialysis (PD) or in-center hemodialysis (HD) can’t do all of the fluid removal, you have to help too. Some people on PD and most people doing in-center HD have some type of fluid limit. (Daily and nocturnal HD remove much more fluid, so using those treatments may mean that you have less fluid restrictions.) How much fluid you can have each day will depend on how much urine you make. Hemodialysis and Fluid Intake As was stated before, controlling your fluid intake will make in-center hemodialysis easier and more comfortable. You will have fewer complications and be less likely to feel “washed out” after a treatment. Your Nephrologist and dialysis team will tell you how much fluid you can drink every day. Many people on hemodialysis need to limit fluid intake to about 32 ounces (approximately 1 liter or 1000 ml or four - 8 ounce cups) a day. Water is heavy! A liter of water weighs one kilo or 2.2 pounds. With no kidney function, your fluid intake on in-center hemodialysis will be about 1 liter per day, or just under 32 ounces. If you weigh yourself at the same time each day, wearing the same clothes, you will know if you are on track. If you make some urine and do daily or nocturnal hemodialysis, you will be able to drink more fluids under the direction of your Nephrologist. Peritoneal Dialysis and Fluid Intake Most people on peritoneal dialysis have some kidney function left so they still make some urine. Over time, this kidney function (called “residual” kidney function) often drops. How much fluid you can have each day will depend on how much urine you make. So it is important to measure your kidney function by testing your serum creatinine or creatinine clearance and reviewing those values with your Nephrologist. If your kidney function drops, you may need more peritoneal dialysis and/or less fluids. Be alert for signs of edema and tell your peritoneal dialysis nurse or Nephrologist if you: Have fluid build-up Notice a lot of sudden weight gain Using more 4.25% dialysate solution than you did before to remove more fluid from your body If you are having more headaches Tips On Limiting Fluids And Controlling Thirst Here are some easy, proven ways to limit fluids and deal with thirst, without drinking too much. Which ones do you want to try? Drink only when you are thirsty and just enough to quench your thirst Be aware of all the fluids in your diet. A fluid is anything liquid at room temperature. This means ice cream or Jell-O®, soup, gravy, etc. Drink from small cups or glasses Eat a piece of cold or frozen fruit Eat soups or cereal with a fork instead of a spoon to limit fluid intake A little ice can quench thirst more than the same amount of liquid. Try freezing regular or diet ginger ale or apple juice into slushes or popsicles Rinse your mouth with cold water or swish mouthwash and spit it out Tips continued: Suck on a piece of regular or sugar-free peppermint candy, which will help quench your thirst and keep your breath fresh Check with your doctor or pharmacist to see if any of your medications cause thirst or dry mouth Each day fill a jar with the water equal to your daily fluid limit. Each time you drink, you will pour that amount out of the jar. You will be able to see how much you have left Spread out your fluids evenly throughout the day If you are gaining too much weight, measure all your fluids for a day or two so you will know just how much you have been drinking Avoid high-sodium foods and foods with hidden sodium as shown below: Questions to ask my Nephrologist & Dietitian 1. Do I measure all fluid into my daily allowance such as; ice cubes, water I take with my pills, juicy fruit? 2. What foods can make me more thirsty than others? 3. How much fluid can I drink in between my dialysis treatments? 4. What happens if I drink too much fluid between my dialysis treatments? 5. Why do I have to control my fluids if I still have urine output? 6. Do all dialysis treatment options (Peritoneal & Home Hemo Therapy) have the same fluid restrictions? 7. What are the most common side effects of too much fluid in my body? 8. How will my dialysis treatments be affected if I have too much fluid in my body? 9. How do you figure my “estimated dry weight”? 10. Where can I get help to control my thirst? Notes Additional Information Nephrologist______________________________________________ Phone Number____________________________________________ Renal Dietitian____________________________________________ Clinic Phone Number_______________________________________ Dialysis Clinic____________________________________________ Phone Number____________________________________________ Developed by Patients for Patients Western Pacific Renal Network 505 San Marin Dr. Suite A-300 Novato, CA 94945 (415) 897-2400 Toll Free 1-800-232-3773 www.esrdnet17.org Supported by the Centers for Medicare and Medicaid Services (CMS) Contract #HHSM-500-2013-NW017C. The opinions and conclusions expressed are those of the authors. They do not necessarily reflect CMS policy. Dialysis Medications Including Questions for Your Patient Care Team Developed by the Patient Leadership Committee/Shannon Moore & Western Pacific Renal Network #17 Common Medications for Dialysis Patients Dialysis performs a number of functions as it cleans the blood of toxins. There are some things, however, that it cannot do. To get the most benefit from your dialysis experience, your Nephrologist will also prescribe medications and supplements that will help maintain your health. Some of the medications you may be taking already and others you may not need. Every dialysis patient is unique and the medications prescribed by your Nephrologist may vary as your needs change. It is important to take all medications as ordered. If you have any questions about your medications or you are experiencing side effects that are uncomfortable, it is important to tell your dialysis care team right away. The following medications and supplements are commonly prescribed for dialysis patients: Blood Pressure medications Calcium tablets: used to keep bones strong and heart muscle healthy Erythropoietin (EPO): a hormone to stimulate red blood cell production Iron: used to help produce red blood cells Phosphate binders: these medications help “bind” excess phosphorus that can build up in the body and affect your bone strength Vitamins diet and minerals: used to enhance health and supplement the Included below are explanations on why additional medications and supplements are important. B Vitamins with Folic Acid: B vitamins also play a role in making red blood cells. Folic Acid works with B vitamins to make new red blood cells. Blood Pressure/Antihypertensive medications: Medicines that keep your blood pressure under control. A common side effect of renal disease is high blood pressure. Calcium Supplement: Calcium supplements lower high phosphorus levels and prevent calcium loss in the bone reducing the chances of bone fracture. EPO Supplement: Healthy kidneys make a chemical called erythropoietin or EPO. If you are on dialysis, your EPO levels may be low which can lead to anemia. Iron Supplement: Iron helps the body make red blood cells or hemoglobin. Iron supplements can help to prevent anemia. Phosphate Binders: These medicines bind phosphorous in the intestine. Dialysis does not remove all of the excess phosphorus. Taking phosphate binders helps remove excess phosphorous from your body. High phosphorous levels can cause calcium and phosphorus to form deposits in the heart, lungs, joints and skin that affect organ functioning. As a dialysis patient, you may be on several different medications and supplements at once. It is a good idea to write down a schedule to help you remember when you take each medication, if they need to be taken on an empty stomach or during meals for example. Below are a few suggestions that may be helpful in managing your medications and supplements that have been prescribed for you. If you have any questions about what medications you are taking and why you are taking them, please contact your Patient Care Team. Tips for Medication Management: Know the medications that have been prescribed to you Understand why you have been prescribed these medications Keep your medications organized Make a list of all current medications, including over-the-counter, vitamins and dietary supplements Give the list of all your medications to your dialysis care team including the over-the-counter medicines; vitamins, etc. Record the days and times when you take your medications Know which medications can or cannot be taken together Take medications at the same time each day unless directed otherwise, this may make it easier to remember taking them Use a plastic medication organizer or medication log If you use a computer, create an electronic medication organizer or spreadsheet Take only the medications prescribed by your physicians Follow all of the directions for each medication Tell your doctor and dialysis care team if you’re having side effects Check with your doctor first before you stop taking your medication Always carry an updated list of all the medications you are taking in case of an emergency Remember, the medications that have been prescribed for you by your dialysis care team play a very important role in your dialysis treatment. It is important that you stick with the medication plan and keep your dialysis team informed if you feel one of your medications is not working for you or if you are having side effects. It is important not to stop your medications without talking to your Nephrologist or dialysis care team first because those medications play an important role in maintaining your health. Keeping track of your prescribed medications can be challenging, especially if you're taking several different medicines. Writing things down will make managing your medications a lot easier. Use our printable medicine tracker to stay organized. Always check with your prescribing doctor before stopping or adjusting your medication. Questions to ask my Nephrologist & Dialysis Care Team 1. What medications have been prescribed for me? 2. Are there times I should take certain medications and why? 3. How can I make my medication easier to swallow without drinking extra fluid? 4. Do I take my medications with food? 5. Which medications do I take with food? 6. What should I do with my medications on dialysis treatment days? 7. What should I do if I miss a dose of one or more of my medications? 8. Who will review my medications with me and how often will that be done? 9. What happens if I don’t feel good when taking a medication? 10. What about over the counter (OTC) medications? 11. Where and how do I get my medications? 12. Is there financial help with medication costs and do I qualify? 13. Is there something I can use to keep track of my medication? Notes Additional Information Pharmacy________________________________________________ Phone Number____________________________________________ Nephrologist______________________________________________ Phone Number____________________________________________ Dialysis Clinic____________________________________________ Phone Number____________________________________________ Developed by Patients for Patients Western Pacific Renal Network 505 San Marin Dr. Suite A-300 Novato, CA 94945 (415) 897-2400 Toll Free 1-800-232-3773 www.esrdnet17.org Supported by the Centers for Medicare and Medicaid Services (CMS) Contract #HHSM-500-2013-NW017C. The opinions and conclusions expressed are those of the authors. They do not necessarily reflect CMS policy. Dialysis Lab Tests Including Questions for Your Patient Care Team Developed by the Patient Leadership Committee/Shannon Moore & Western Pacific Renal Network #17 Understanding Your Lab Tests & Results Lab tests are a regular occurrence when you are a dialysis patient. Once a month, like clockwork, a dialysis technician or nurse will draw your blood, usually from your dialysis access prior to starting your treatment. These lab tests and their results will tell a lot about how well you are being dialyzed and if adjustments need to be made to your dialysis treatments, diet or medications. While understanding your monthly lab results may seem like learning a foreign language, they serve an important purpose. Understanding what all the results mean can be a powerful tool to help you manage your own health. As a dialysis patient, you have a vested interest in knowing what your lab tests mean for your overall health. It will also give you the ability to talk to your dialysis care team about any questions you may have in regards to your test results. Maybe your potassium is getting too high. Talking with your dietitian would be a great way to go over your meal plans to make sure you are eating the right foods for a low potassium diet. Normal Values & Your Results Your test results will be shown as a number, say 10. The number 10 would be the value of a substance, like creatinine, that is being measured in your blood. Most often, in lab results, a target range is used to show the variations of a test result. For example, the range of creatinine values for a dialysis patient is from 10-18 mg/dl. A value of 10 would then fall within normal target range. If the value were 20 then the creatinine would be falling outside of the normal target range. An abnormally high value would alert your dialysis care team that some adjustments need to be made to your dialysis treatment prescription, for example, time on treatment, medications, or diet. These tests are important because if your lab results are between the target ranges, then you are receiving adequate dialysis. It also means that your diet, medications and the amount of dialysis time prescribed is working for you. If, however, your lab results fall outside the prescribed ranges, then you are either not receiving adequate dialysis or your diet or medications need to be adjusted. The quality of life and how good you feel while you are on dialysis depends a lot on making sure you are eating well, taking your medications and being dialyzed the appropriate amount of time. Your lab results will tell the dialysis care team many things. If you are getting enough nutrition from the foods you eat and your medications are working, like your phosphate binders to keep your phosphorus down, then no adjustments will need to be made. Below, is a list of a typical dialysis lab tests. Your clinic may include more tests other than what is stated below. This list will help you to understand your lab tests, what they measure and how to know if you are within your target range for a given test. Complete Blood Count (CBC): looks at your blood cells themselves; the percentage of red, white and other cells in your blood. Hemoglobin (HGB): is a protein, carried by red blood cells, which transports oxygen through the body. Target Range: 10-12 g/dL for men and women on dialysis Hematocrit (HCT): is the measurement of the amount of red blood cells compared to water (plasma) in the blood. Target Range: between 30-36% Ferritin (Iron): is the amount of iron that can be stored in the body. Target Range: Between 100-500 mg/mL Transferrin Saturation (TSAT): is the amount of iron available to form blood cells Target Range: Between 20-50% Potassium (K): regulates muscle action in the body. It is one of the tests that your care team will watch closely. High levels of potassium can be dangerous to the function of your heart, so your dietitian will give you a list of high potassium foods to limit or avoid in your diet. Target Range: Less than 6.0 mEq/L for people on dialysis Sodium (Na): is necessary for maintaining blood pressure and volume in the body. Too much sodium in the blood will cause the body to retain water, which can cause swelling “edema” and also can cause your blood pressure to rise. Target Range: 135-145 mEq/L Blood Urea Nitrogen (BUN): is a waste product of protein metabolism, the more protein you eat, the more urea is produced. Eating lots of protein will make your BUN high. BUN is also used to calculate how much dialysis you are getting. Target Range: 60-80 mg/dL for people on dialysis Creatinine (CR): is a waste product of muscle breakdown. Creatinine is a good indicator of how well your kidneys are functioning. High creatinine levels show the level of kidney disease. Dialysis removes excess creatinine from the blood. Target Range: 10-18 mg/dL for people on dialysis Glomerular Filtration Rate (GFR): is an estimate of how well your kidneys are filtering your blood. Range is less than 15 GFR for people with kidney failure Kt/V: is another way of measuring dialysis adequacy. K = dialyzer clearance, the rate at which blood passes through the dialyzer t = stands for time V = the volume of fluid in a patient's body Target Range: At least 1.2 for hemodialysis patients, 2.0 for peritoneal dialysis patients Parathyroid Hormone (PTH): helps you absorb calcium from what you eat and drink. High phosphate levels lead to high PTH. Normal range is between 10-50 pg/ml Calcium (Ca): is stored in your bones and is needed to keep them strong. Target range: Between 8.4-9.5 mg/dl Phosphorus (P): is made by protein breakdown and is also found in many foods that you eat. It is a chemical that works with calcium to keep bones strong and healthy but monitored closely on dialysis. Target Range: 3.5-5.5 mg/dL for people on dialysis Calcium-Phosphorus Product (Ca x P): A ratio of your serum calcium level and serum phosphorus levels. This is important in monitoring your risk of developing phosphate crystals in the body’s soft tissues and joints. Target Range: Needs to be less than 55 for people with kidney disease and over age 12 Additional Lab tests for the patient with Diabetes Blood Glucose: is the main tool to determine diabetes control. This test checks you blood glucose level at any one given time. Normal: <100 mg/dl Pre-diabetes: 100-125 mg/dl Diabetes: 126 mg/dl or more Hemoglobin A1c: this test gives you a picture of your average blood glucose control for the past two to three months if you are diabetic. Target range: Below 6.5% Your Personal History Now it is time to take a look at your own lab results. Are there tests that are not listed in this booklet that you would like more information about? Do you have questions about your values? Would you like to talk to your dietitian to see if you can lower a lab value through a diet change? It is a great idea to write down your questions so that you can go over the lab tests at your next dialysis appointment. Having someone from your dialysis care team go over the lab tests is a great way to learn and also to understand what can be done to keep your lab values within the target range to maintain optimum health. Questions to ask my Nephrologist & Dialysis Team 1. How often do I have my lab work drawn? 2. How will I know the results of my tests? 3. Who goes over the lab results with me? 4. Is there some type of report card available with the results written on it that I can keep? 5. Can lab tests be repeated during the month to check for improvement or do I have to wait until the next month? 6. Is the amount of time prescribed for my dialysis treatment directly related to the results of my lab tests? 7. If I choose home dialysis therapy will my lab tests be done less frequently? 8. Which lab test result is the most important to watch? 9. Do I have to be fasting (no food or drink prior to testing) for my monthly lab tests? 10.Who pays for the lab tests? 11.Do I have to pay separately for having the lab tests done every month? 12.If a lab test is repeated, which test result is used for my monthly review? Notes Notes Additional Information Nephrologist______________________________________________ Phone Number____________________________________________ Dialysis Clinic____________________________________________ Phone Number____________________________________________ Developed by Patients for Patients Western Pacific Renal Network 505 San Marin Dr. Suite A-300 Novato, CA 94945 (415) 897-2400 Toll Free 1-800-232-3773 www.esrdnet17.org Supported by the Centers for Medicare and Medicaid Services (CMS) Contract #HHSM-500-2013-NW017C. The opinions and conclusions expressed are those of the authors. They do not necessarily reflect CMS policy. ESRD from A to Z A dictionary for dialysis and transplant patients Created by the Southeastern Kidney Council Consumer Committee A glossary of terms often used when talking about dialysis, transplantation, and End Stage Renal Disease. The mission of the Southeastern Kidney Council is to improve the lives of patients with or at risk for End Stage Renal Disease by promoting and advancing quality of care. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 1 This dictionary was developed by the Consumer Committee of the Southeastern Kidney Council, ESRD Network 6. It is designed to be used by people who have ESRD, their families and friends. We hope this dictionary will help you better understand words associated with the disease and increase communication with your health care team. The words are listed in alphabetical order. Words that appear in bold italic are defined elsewhere in the dictionary. Southeastern Kidney Council, Inc. 1000 St. Albans Drive, Suite 270 Raleigh, NC 27609 (919) 855-0882 (919) 855-0753(fax) www.esrdnetwork6.org info@nw6.esrd.net (e-mail) 1-800-524-7139 (patients only) This publication was developed under contract with the Centers for Medicare & Medicaid Services Baltimore, Maryland, CMS Contract #500-00-NW06 Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 2 Access A means to reach the bloodstream. In hemodialysis, fistulas, grafts, catheters, and subcutaneous vascular access’ are used. Access to the peritoneal cavity for peritoneal dialysis is through a peritoneal catheter. A Access Aneurysm A thinned, bulging, pulsating area on the fistula or graft. Aneurysms can be caused by repeated puncture of an access in one spot. This trauma weakens the access wall and could cause it to rupture. Hemodialysis access Acute Renal Failure A condition in which the kidneys suddenly stop working. In many cases, kidneys can recover. Acute Tubular Necrosis (ATN) Reversible kidney damage resulting in delayed kidney function. Adequacy The amount of dialysis to prevent uremic symptoms. In hemodialysis, this is measured by Kt/V and URR. In peritoneal dialysis, this is measured by Kt/V and Creatinine Clearance. Advanced Directives Written documents to record a patient’s wishes regarding his or her medical treatment, in case that patient is unable to make their choices known later. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 3 A Albumin One of a class of proteins in the blood. A reduced level of albumin may be a sign of inadequate protein intake in the diet. Allograft An organ or tissue transplant from one human to another. American Association of Kidney Patients (AAKP) An organization composed primarily of patients on dialysis, transplant recipients and family members. AAKP is a non-profit association which strives to meet the needs of all kidney patients through educational programs, patient advocacy and the promotion of rehabilitation. American Kidney Fund (AKF) A national non-profit organization that provides direct financial assistance to those who suffer from kidney disease. Anemia A common condition in patients with kidney disease which there are not enough red blood cells in the blood to carry oxygen. Anemia is often referred to as “low blood” and causes weakness and fatigue. Angioplasty The inflation of a balloon inside a narrowing blood vessel. The inflation of the balloon makes the vessel opening bigger and allows for more blood flow. Antibiotic A medication used to kill bacteria that may be causing an infection in the body. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 4 Antibody A protein in the body that helps fight disease. A Anticoagulant A substance that is given to prevent clotting of the blood (example: Heparin). Antigen A substance in the body that stimulates the production of antibodies. Antihypertensive A medication that reduces high blood pressure (hypertension). Anuria A condition in which a person stops making urine. Arterial Line The tube carrying blood from the body into the artificial kidney (dialyzer). Arteriogram, Renal An X-ray test involving injection of dye into the main artery supplying the kidney, used to determine if the blood vessels to the kidney are normal. . Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 5 Arteriovenous Fistula Surgical connection of an artery directly to a vein, usually in the forearm, created in patients who will need hemodialysis. The AV fistula causes the vein to grow thicker, allowing the repeated needle insertions required for hemodialysis A Artery A blood vessel that carries blood away from the heart and to the body. Artificial kidney Another name for a dialyzer. Ascites Fluid which is retained in the abdominal cavity. Autoimmune Disease A disorder in which the tissues and organs of the body are attacked by their own immune system. AV Fistula See Arteriovenous Fistula. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 6 B Bacteria “Germs” too small to see with the naked eye that can produce diseases or infections. Bath Another name for dialysate fluid, which is a clean salt-containing solution. Inside the dialyzer waste products will flow from the blood into the dialysate and are then washed away. Bilateral nephrectomy The removal of both kidneys. Biopsy The process of surgically removing tissue from living patients for diagnostic examination. Bladder The part of the urinary tract that receives urine from the kidneys and stores it until urination. Blood Flow Rate (BFR) or QB The amount of blood passing through the artificial kidney (dialyzer) each minute. This is determined by the speed at which the blood pump is set. Blood Glucose Meter A machine that helps test how much glucose (sugar) is in the blood. A specially coated strip containing a fresh drop of blood is inserted in a machine, which then calculates the level of glucose in the blood sample and displays a result. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 7 B Blood Leak The dialyzer fibers or membrane develop a small break or tear allowing blood to leak into the dialysate. Blood Pressure Pressure of the blood flowing through the blood vessels. Stated as a systolic number over a diastolic number. Blood Pump A pump that is used to bring blood from the patient and push it through the artificial kidney or dialyzer and back to the body. Blood Sugar See Glucose. Blood Urea Nitrogen (BUN) A waste product, or toxin, that appears in the blood as protein from food is digested. BUN levels are a measure of how well the kidneys are functioning as well as adequacy of dialysis and nutritional status. A high BUN indicates that the kidneys are not removing enough waste. Bloodlines The arterial line and venous line used in hemodialysis. Bright’s Disease See Glomerulonephritis. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 8 B Bruit The sound of blood moving through a fistula or graft that indicates that the access is working. Bruits can also be heard from an artery and may indicate a blockage. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 9 C Cadaver Donor A person who has just died that has agreed, before their death, to offer an organ, tissue or blood for transplantation. Calcium A mineral that the body needs for strong bones and teeth. A combination of too much phosphorus and too little calcium causes weak, brittle bones. Cannulation The process of inserting a needle into the graft or fistula. CAPD See Continuous Ambulatory Peritoneal Dialysis. Catheter A tube inserted through the skin into a blood vessel or body cavity to draw out blood or body fluids, or to put in fluid. In peritoneal dialysis, a catheter is used to instill dialysis solution into the abdominal cavity and drain it out again. In hemodialysis, a catheter in a vein can be used to create a temporary or longerterm dialysis access. Hemodialysis catheter CCPD See Continuous Cycling Peritoneal Dialysis. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 10 C Centers for Medicare & Medicaid Services (CMS) (formerly know as HCFA – Health Care Financing Administration) The department of the federal government that oversees the Medicare and Medicaid programs. Central Venous Stenosis Narrowing of the central veins in the body that can make the arm on the that side unsuitable for a vascular access. Chronic Renal Failure (CRF) Slow and progressive loss of kidney function over several years, often resulting in End Stage Renal Disease. Clotting time The time it takes for the blood to form a clot. CMS See Centers for Medicare & Medicaid Services. Complaint and Grievance Procedure A process for a concerned person to request an investigation into an allegation involving a facility, physician, or other provider. The dialysis facility and the ESRD Network both have such a procedure. Conductivity The measure of ions in a solution. A conductivity meter measures the chemical composition of dialysate by measuring the dialysate’s ability to conduct an electrical current. If the conductivity of dialysate is not correct an alarm will go off, and the dialysate is bypassed to the drain. This means the dialysate will not come in contact with the patient’s blood. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 11 C Conductivity Alarm The conductivity alarm indicates an inappropriate mixture of water and dialysate concentrate. See Conductivity. Congestive Heart Failure (CHF) A condition in which the weakened heart does not pump blood effectively. This results in the body retaining excess fluid. The fluid collects in the lungs making breathing difficult. In a dialysis patient, treatment may include removal of excess body fluid during dialysis. Continuous Ambulatory Peritoneal Dialysis (CAPD) A type of dialysis where the patient’s peritoneal membrane is used as the dialyzer. The patient dialyzes at home, using special supplies, but without the need for a machine. When you are on CAPD, you change the fluid in your peritoneal cavity by doing what is called "an exchange". This can be performed in any clean and convenient place - at home, at work, at school or on vacation. The exchanges use gravity to drain the used fluid out of the peritoneal cavity and to replace it with fresh fluid. Most CAPD patients need to do about 3 to 5 exchanges a day. (See Peritoneal Dialysis) Continuous Cycling Peritoneal Dialysis (CCPD) A type of dialysis where the patient dialyzes at home and uses a machine which automatically delivers cycles of dialysis exchanges. A typical CCPD schedule involves three to five exchanges during the night while the person sleeps. One or more additional exchanges may also be performed during the daytime. (See Peritoneal Dialysis) Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 12 C Creatinine A waste product released from the muscles of the body. Creatinine is normally removed from the blood by the kidneys. Creatinine Clearance A test that measures how well the kidneys remove creatinine from the blood. A decreased creatinine clearance reading means decreased function of the kidneys. Cross-Matching A test used to establish blood compatibility before transfusion. Before a transplant, the donor’s blood is tested with the recipient’s blood to see whether they are compatible. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 13 D Declotting The removal of a blood clot so fluid can flow through a blood vessel or tube, such as a dialysis access. Department of Health and Human Services (DHHS) DHHS administers many programs at the Federal level dealing with the health and welfare of the citizens of the United States. It is the “parent” of the Centers for Medicare & Medicaid Services (CMS). Diabetes Mellitus A disease that occurs when a person has high blood sugar. Diabetic Nephropathy Kidney disease caused by diabetes. Diabetic Neuropathy Damage of nerves by diabetes. Diabetic Retinopathy An eye disease caused by diabetes that may result in reduced vision or blindness. Dialysate/Dialysate fluid Also called bath. The solution used to remove excess fluids and waste products from the blood. Dialysate Flow Rate (DFR) or QD The rate at which dialysate fluid moves through the dialyzer. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 14 D Dialysis The process of cleaning wastes from the blood artificially. This job is normally done by the kidneys. If the kidneys fail, the blood must be cleaned artificially with special equipment. The two major forms of dialysis are hemodialysis and peritoneal dialysis. Dialysis Technician An individual who provides dialysis care under the supervision of a registered nurse or a physician. Also called a Patient Care Technician (PCT). Dialyzer (artificial kidney) An artificial kidney used with the hemodialysis machine. The dialyzer has two sections separated by a membrane. One section holds dialysate fluid and the other holds the patient’s blood. Waste products and fluid travel from the blood in to the dialysate fluid, across the dialyzer membrane, and are disposed of. Diastolic The bottom blood pressure number (or second number) which measures the force of the heart muscle at rest, when it expands and fills with blood. Dietitian An expert in nutrition who helps people with special health needs plan the kinds and amount of foods to eat. Also called a nutritionist. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 15 D Disequilibrium Syndrome The term used to describe a condition which may result from dialysis therapy, most commonly in patients new to dialysis. Some symptoms may be headache, cramps, nausea, or vomiting. Donor A person who offers blood, tissue, or an organ for transplantation. Dry Pack A dialyzer that has not been pre-processed for first use of hemodialysis. Dry Weight (ideal weight) (target weight) The weight at which all excess fluids have been removed. Durable Medical Equipment (DME) Items commonly covered under the Medicare program such as oxygen equipment, wheelchairs, and other medically necessary equipment prescribed by a physician for a patient’s in-home use. Dwell Time In peritoneal dialysis, the amount of time that dialysate fluid remains in the patient’s abdominal cavity during an exchange. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 16 Edema Swelling caused by too much fluid in the body. E Electrolytes Salts in the body fluids including sodium, potassium, magnesium, and chloride. The kidneys control the amount of these electrolytes in the body. When the kidneys fail, electrolytes get out of balance, causing potentially serious health problems. Dialysis can help correct this problem. End Stage Renal Disease (ESRD) Any irreversible kidney disease that requires dialysis therapy or kidney transplant in order to live. The term “end-stage” means that the renal disease is permanent and irreversible, and not that the person’s condition is terminal. Erythropoietin A hormone which stimulates the body to produce red blood cells. It is normally produced in the kidney, but with renal failure the body cannot produce this hormone, resulting in anemia. Equipment Technician An individual who performs the required tasks for the maintenance, monitoring, and repair of dialysis machines, reuse processing and water treatment systems and equipment at the dialysis facility. ESRD See End Stage Renal Disease. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 17 E ESRD Networks The ESRD Networks were established by the U.S. Government in 1978 to oversee dialysis and transplant facilities and ensure that patients receive high quality care. The Networks collect data, oversee quality improvement activities, encourage rehabilitation, establish a grievance procedure for patients, and provide resource materials to ESRD staff and patients. Exchange In peritoneal dialysis, the draining of used dialysate fluid solution from the abdomen, followed by refilling with a fresh bag of solution. Exit Site The site at which the catheter exits the body. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 18 Femoral Catheter A temporary catheter placed in the femoral vein in the groin. F Ferritin The amount of stored iron in the body. First-Use Syndrome Symptoms that may occur after starting hemodialysis with a dry pack or dialyzer that has not been pre-processed for first use of hemodialysis. Symptoms may include chest pain, back pain, nervousness, and itching. Fistula See Arteriovenous Fistula. Fistulogram A special procedure performed in the Radiology Department of a hospital. With the use of X-ray dye, the blood flow through a fistula will be evaluated. The procedure can detect problems such as a clot or narrowing. Early detection and treatment of problems with a fistula can improve its performance and limit future complications. Flu See Influenza. Fluid Overload Excess sodium (salt) and fluid retained in the body between dialysis treatments; may cause shortness of breath and swelling. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 19 F Fluid Restriction The amount of fluid a patient is allowed to drink in a 24-hour period to avoid adding extra weight that would cause fluid overload and undue stress to the heart. Folic Acid A vitamin necessary for red blood cell production. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 20 G Glomeruli Plural of glomerulus. Glomerulonephritis Also called Bright’s Disease or Nephritis. It is an inflammation of the glomeruli. It usually affects both kidneys and generally first occurs in early childhood. Recovery from the acute form may take one year. Those with the chronic form suffer low, progressive damage which may ultimately lead to ESRD. Glomerulus A tiny set of looping blood vessels in the kidney where the blood is filtered. Glucose A type of sugar found in the body. Also called blood sugar. Graft In hemodialysis, a vascular access surgically created using a synthetic tube to connect an artery to a vein. In transplantation, a graft is the transplanted organ or tissue. Hemodialysis Graft Guaiac Cards Cards used to test for hidden blood in the stool. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 21 Hematocrit A measure that tells how many red blood cells are present in a blood sample. Low hematocrit suggests anemia or increased blood loss. H Hemodialysis The use of a machine to clean wastes from the blood after the kidneys have failed. The blood is circulated through tubes to a dialyzer, which removes wastes and extra fluid. The cleaned blood then flows through another set of tubes back into the body. Hemoglobin The substance in red blood cells that carries oxygen around the body. Low hemoglobin suggests anemia or increased blood loss. Heparin A medication that prevents the blood from clotting too quickly. Hepatitis Inflammation of the liver. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 22 H Hepatitis B Antigen Test A test which determines the presence of an antigen associated with the circulation of the Hepatitis B virus in the blood. Hereditary A disease, trait, or condition that is passed on in a family (blood relatives). High Blood Pressure See Hypertension. Human Insulin Insulin that is chemically the same as insulin that a person’s body produces naturally. Hyperglycemia Too high a level of glucose (sugar) in the blood; a sign that diabetes is out of control. Hyperkalemia A high level of potassium in the blood; can cause irregular heartbeat and cardiac arrest if severe. Hypertension High blood pressure, which can be worsened by too much fluid in the blood vessels or fluid overload. Hypoglycemia Low blood sugar. Hypotension Low blood pressure. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 23 I Ideal Weight See Dry Weight. Immune System The body’s system for protecting itself from viruses and bacteria or any “foreign” substance. Immunosuppressant A drug given to suppress the natural responses of the body’s immune system. Immunosuppressants are given to patients to prevent the body’s immune system from fighting and rejecting the transplanted organ. Also given to patients with autoimmune diseases. Implantable Port See Subcutaneous Vascular Access. Infiltration The leakage of a substance into body tissues. In hemodialysis patients, infiltration of blood into the tissues surrounding the access can occur if the needle punctures the back of the vessel wall or is partially dislodged from the access. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 24 I Influenza (flu) A contagious disease that is caused by the influenza virus. It attacks the respiratory track (nose, throat, and lungs). The flu is different from a cold. It usually comes on suddenly and may include symptoms such as fever, headache, tiredness, dry cough, sore throat, body aches, and nasal congestion. The influenza vaccine is recommended every Fall for all people age 50 and over, for people of all ages who have chronic diseases, or for anyone of any age who wants to reduce the risk of contracting the “flu”. A flu shot can be given at any time during the autumn or winter but is most effective when it is given from early October to mid-November, before the flu season begins. Insulin A hormone that controls the body’s use of glucose (sugar). When the body cannot make enough insulin or is resistant to its own insulin, the person with diabetes may have to inject insulin. Internal Jugular Catheter (IJ) A temporary dialysis catheter that is placed in the internal jugular vein of the neck. Intravenous (IV) Within a vein. Iron Deficiency Lack of enough available iron to make red blood cells. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 25 K Kidney Failure The loss of kidney function. (See also End Stage Renal Disease) Kidney Transplantation The replacement of a diseased kidney with a healthy one. Kidneys The two bean-shaped organs located on either side of the spine, just above the waist. They rid the body of waste materials and maintain fluid balance through the making of urine. Kt/V A measurement of how much urea is being removed from the blood during dialysis. The measurement takes into account the efficiency of the dialyzer, the treatment time, and the total amount of urea in the body. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 26 L Lipid A term for fat. The body stores fat as energy for future use just like a car that has a reserve fuel tank. When the body needs energy, it can break down the lipids into fatty acids and burn them like glucose (sugar). Living Related Donor (LRD) A living family member that donates an organ. Living Unrelated Donor (LUD) A living person, not a family member, who donates an organ. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 27 M Medicaid A state and federally funded program that helps pay for medical bills. A person’s income must be below a certain level to receive Medicaid. Benefits vary from state to state. Medicare A federally funded program that helps pay for medical bills. The Centers for Medicare & Medicaid Services (CMS) administers this program. Membrane A thin sheet or layer of tissue that lines a cavity or separates two parts of the body. A membrane can act as a filter, allowing some particles to pass from one part of the body to another while keeping others where they are. The artificial membrane in a dialyzer filters waste products from the blood. Modality Methods of treatment for kidney failure. Modality types for End Stage Renal Disease include transplant, peritoneal dialysis, and hemodialysis. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 28 N National Kidney Foundation (NKF) A voluntary health organization which seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. Needle Gauge Refers to the size of the needle. The larger the number, the smaller the size of the needle. Negative Pressure The method of removing extra water and salt from the blood by creating pressure inside the blood compartment of the dialyzer, allowing the process of ultrafiltration to take place. Nephrectomy Surgical removal of a kidney. Nephritis See Glomerulonephritis. Nephrolithiasis Kidney stones. Nephrologist A medical doctor who treats patients with kidney problems or hypertension. . Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 29 Nephron A tiny part of the kidneys. Each kidney is made up of about 1 million nephrons, which are the working units of the kidneys, removing wastes and extra fluids from the blood. N Nephrosis A condition in which there is a large and abnormal leakage of protein into the urine. Nocturnal Home Hemodialysis (NHHD) Hemodialysis done at night while a person sleeps. The patient sleeps through the treatment and disconnects in the morning. The patient typically dialyzes 6 nights a week and usually for a minimum of 7 hours each night. Nocturnal Intermittent Peritoneal Dialysis (NIPD) A type of dialysis where the patient generally dialyzes at home and uses an automated peritoneal cycler for delivering dialysis exchanges. NIPD differs form CCPD in that the patient does not perform any exchanges during the day. Non-Insulin Dependent Diabetes Mellitus (NIDDM) Diabetes mellitus that does not require the use of insulin injections; it may be controlled by diet and medications. (See Type II Diabetes Mellitus) Nuclear Scan of the Kidneys A test of the structure, blood flow, and function of the kidneys. The doctor injects a solution into an arm vein and uses a radiation detector to monitor its progress through the kidneys. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 30 N Nutritionist See Dietitian. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 31 O Occlude Obstructed or blocked flow in a blood vessel, graft, or catheter. Occupational Therapist A person trained to help patients to improve the use of fine motor skills. (i.e., finger and hand movement). Organ Donation The act of giving one's organs to someone else. Organ Procurement The process of acquiring donor organs such as kidneys in the ESRD program. UNOS directs the collection and placement of donor kidneys. Organ Procurement Organizations (OPO) An organization that coordinates activities related to organ procurement. OPO activities include: evaluating potential donors, discussing donation with surviving family members, arranging for the surgical removal and transport of donated organs, and educating the public about the need for donations. Osmosis Passing of fluid through a semipermeable membrane from a solution with a low solute concentration to a solution with a higher solute concentration until there is an equal concentration of fluid on both sides of the membrane. Osteodystrophy Bone disease. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 32 P Palpate To examine by touching. Parathyroid Glands Glands producing parathyroid hormone which regulates calcium metabolism. Parathyroidectomy The procedure of surgically removing the parathyroid glands. Patent Unblocked flow of blood in a blood vessel, graft, or catheter. Patient Care Technician (PCT) See dialysis technician. Perfusion Machine A machine that keeps a donor kidney in the best possible condition outside the body until such time as it can be transplanted into a recipient. Peritoneal Cavity The space inside the abdomen but outside the internal organs. Peritoneal Dialysis A treatment for kidney failure in which dialysate is put into the peritoneal cavity. The dialysate causes waste and excess water to be drawn across the peritoneal membrane into the cavity. When the process is complete, the fluid is drained off and replaced. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 33 Peritoneum The membrane lining the peritoneal cavity. P Peritonitis Infection in the peritoneal cavity usually treated with antibiotics. Phosphate Binders Phosphate binders help to pass excess phosphate out of the body in the stool, reducing the amount of phosphate that gets into the blood. These medicines "bind" the phosphate in the digestive tract by combining with it to form a compound that isn't absorbed into the blood. Phosphorus A mineral necessary for bone strength. A combination of too much phosphorus and too little calcium causes weak, brittle bones. Polycystic Kidney Disease An inherited disorder characterized by many grape-like clusters of fluid-filled cysts that make both kidneys larger over time. These cysts take over and destroy working kidney tissue. Potassium An essential chemical salt in the body that regulates heart and muscle movement. High or low levels in the blood may cause muscle weakness and cause the heart to stop. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 34 P Priming Filling and rinsing the bloodlines and the dialyzer with a solution of saline. Proteinuria The presence of protein in the urine. This indicates that the kidneys are not working properly. Pyelonephritis An infectious swelling of the tissue of the kidneys, which at the onset may not interfere with kidney function, but if left untreated, may lead to kidney failure. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 35 Q QB See Blood Flow Rate. QD See Dialysate Flow Rate Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 36 R Rehabilitation A return to stable health, a positive outlook, and enjoyable activities that make people feel better physically and mentally. A successful rehabilitation program uses medical treatment, counseling, education, diet, and exercise. Rejection When the body does not accept a transplanted organ. Renal Having to do with, or referring to, the kidneys. Renin A hormone produced by the kidney which helps regulate the volume of fluid in the body and blood pressure. Reuse The process of cleaning and sterilizing dialyzers to use again. Strict reuse regulations have been established by the Federal Government to insure patient safety and quality of treatment. A dialyzer is reused only by the same patient. Reuse Technician An individual who performs the procedures necessary to clean and properly prepare dialyzers to be used again. Rinseback The process of using saline to flush the patient’s blood back into the body from the dialysis tubing after dialysis. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 37 Saline A salt solution containing sodium and chloride. S Self-dialysis Dialysis performed with little or no staff assistance (except in emergency situations) by an ESRD patient who has completed an appropriate course of training. Semipermeable Membrane A material through which only certain particles may pass, and to which other particles cannot pass. Staff-assisted dialysis Dialysis performed by the staff of the renal dialysis center or facility. Sepsis An infection in the blood caused by bacteria. Shunt Another word for fistula or graft. Sodium One of the major chemical salts of the body. Found and taken into the body most commonly as table salt. When excess amounts cannot be excreted from the body by the kidneys, edema and high blood pressure may result. The intake of this salt must be controlled by diet in patients with most types of renal failure. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 38 S Sodium Modeling Sodium modeling means to adjust the concentration of sodium in the dialysate to fit the individual patient, according to the doctors orders. Sodium modeling may make the dialysis treatment more comfortable by reducing some symptoms such as cramping. It may also reduce drops in the blood pressure. Solute A substance dissolved in another substance (i.e., salt water). Steal Syndrome Occurs when a fistula or graft “steals” too much blood away from the distal (farthest from center of body) part of the arm, usually the hand. Stenosis The narrowing (getting smaller) of a blood vessel which can lead to clotting of the vessel. Sterile Being completely free from all germs. Subclavian/Subclavian Vein Means "beneath the clavicle." The clavicle is the collarbone, a bone in the shoulder. The subclavian vein is the large vein behind the collarbone which is sometimes used for hemodialysis. Subclavian Catheter A catheter placed in the subclavian vein. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 39 Subcutaneous Vascular Access (LifeSite®) A small metallic device or devices placed under the skin, usually in the upper chest area, to deliver hemodialysis. These devices are connected to tow hollow, flexible catheters that are in turn connected to large veins in the central venous system. The entire system is completely under the skin. S Suture The material used to surgically close a wound or join tissues. Systolic The top blood pressure number which measures the force of contraction of the heart muscle as blood is pumped out of the heart chambers. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 40 T Target Weight See Dry Weight. Tenckhoff catheter A type of catheter used in peritoneal dialysis. Thrill The buzzing sensation that can be felt by touching a fistula or graft. This indicates that the access is working. Tenckhoff Catheters Thrombus A clot formed in a blood vessel. Tissue Typing A laboratory test done on your blood to find the degree of matching between a potential donated kidney and the patient waiting for transplant. Toxins Waste products that accumulate in the blood of ESRD patients that are usually harmful to the body. Transfer Set The section of tubing attached immediately to a peritoneal catheter. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 41 T Transient Patients Patients receiving treatments at a facility and who are not a part of a facility’s regular caseload (i.e. traveling patients). Transplant The replacement of a diseased organ with a healthy one. Transplant Coordinator The nurse who works with the transplant surgeon and the dialysis team to coordinate testing before transplant and to coordinate the patient’s care after transplant. Transplant Surgeon The doctor responsible for placing the transplanted kidney. Trendelenburg position A body position in which the head is placed at 45 degrees with the legs up (feet above the head). This position helps when a person has hypotension. Tunneled Cuffed Catheter A dialysis catheter that is inserted into a blood vessel through a tunnel created under the patient’s skin. Inside the tunnel tract, surrounding tissue grows into an attached cuff to help stabilize the catheter and provide a physical barrier to bacteria. Twenty-Four Hour Urine Collection The volume of the total amount of a person’s urine for a 24-hour period. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 42 T Type I Diabetes Mellitus This type of diabetes, usually occurs at a young age and results from a lack of insulin production by the body and requires insulin therapy. Type II Diabetes Mellitus Non-Insulin dependent diabetes. Usually occurring in adults. See NonInsulin Dependent Diabetes. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 43 U Ultrafiltration The process of removing excess water from the blood during dialysis. Ultrasound A technique that bounces safe, painless sound waves off of organs to create an image of their structure. United Network for Organ Sharing (UNOS) A nonprofit charitable organization that maintains the nation’s organ transplant waiting list under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services. United States Renal Data System (USRDS) A national data system which collects, analyzes, and distributes information about End Stage Renal Disease (ESRD) in the United States. The USRDS is funded directly by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in conjunction with the Centers for Medicare & Medicaid Services (CMS). Urea A waste product found in the blood and caused by the normal breakdown of protein in the body. Urea is normally removed from the blood by the kidneys and then excreted in the urine. Uremia or Uremic Syndrome Changes in the body caused by the build-up of waste products in the blood when the kidneys fail to function. Ureter One of the two tubes that carry urine from the kidney to the bladder. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 44 U Urethra The tube that carries urine from the bladder to the outside of the body. Urinalysis A test of a urine sample that can reveal many problems of the urinary system and other body systems. Urinary Tract The system that takes wastes from the blood and carries them out of the body in the form of urine. The urinary tract includes the kidneys, renal pelvises, ureters, bladder, and urethra. Urinate To release urine from the bladder to the outside. Urine Liquid waste product filtered from the blood by the kidneys, stored in the bladder, and expelled from the body through the urethra by the act of voiding or urinating. Urologist A surgical doctor that treats diseases of the urinary tract and urogenital system. URR (Urea Reduction Ratio) A blood test that compares the amount of blood urea nitrogen (BUN) before and after dialysis to measure the effectiveness of the dialysis prescription. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 45 V Vascular Access See Access. Vasculitis Inflammation of the blood vessel walls. Vein A blood vessel that carries blood toward the heart. Venous Line The tube carrying the blood back into the body from the artificial kidney machine. Vital Signs Blood pressure, temperature, pulse, and respiratory rate. Vocational Rehabilitation (VR) The process of facilitating an individual in the choice of, or return to, a suitable vocation. When necessary, assisting the patient to obtain training for such a vocation. Vocational rehabilitation can also mean preparing an individual regardless of age, or physical condition to cope emotionally, psychologically, and physically with changing circumstances in life, including remaining at school, work, or a work equivalent (homemaker). Void To urinate or empty the bladder. Southeastern Kidney Council - ESRD Network 6 ESRD from A to Z N e t w o r k 6 46 ESRD Resources Resource Descrip on Address Organiza on for kidney pa ents that provides educa onal material to pa ents about treatment op ons and resources American Associa on of Kidney Pa ents 3505 E Frontage Rd. Suite 315 Tampa, FL 33607 Federal agency that administers Medicare and Medicaid necessary for ESRD treatment payment CMS 7500 Security Blvd. Bal more, MD 21244 Provides free materials to kidney pa ents about treatment op ons, rehabilita on, and main‐ taining ac ve lifestyle Life Op ons Rehabilita on Program C/O The Medical Educa on Ins tute 414 D’Onofrio Dr. Suite 200 Madison, WI 53719 Provides informa on for kidney pa ents about kidney disease, treatment op ons, and resources Na onal Kidney Founda on 30 East 33rd St. New York, NY 10016 Independent agency of the federal government that administers social security benefits necessary for Medicare enrollment To locate the appropriate office for your region please call the toll free number or visit the website listed Phone Number Website American Associa on of Kidney Pa ents (AAKP) 1‐800‐749‐2257 www.aakp.org Centers for Medicare and Medicaid Services (CMS) Life Op ons 1‐877‐267‐2323 www.cms.gov 1‐800‐468‐7777 www.lifeop ons.org Na onal Kidney Founda on (NKF) Social Security Administra on (SSA) Western Pacific Renal Network #17 (WPRN) Organiza on contracted by CMS to bring the ESRD program to Northern California and the Pacific Islands Western Pacific Renal Network 505 San Marin Dr. Bldg A Suite 300 Novato, CA 94945 1‐800‐622‐9012 www.kidney.org 1‐800‐772‐1213 www.ssa.gov 1‐800‐232‐3773 www.esrdnet17.org To file a grievance, please contact : Western Pacific Renal Network 505 San Marin Drive Building A, Suite 300 Novato, CA 94945 (415) 897‐2400 Toll Free: (800) 232‐3773 Network Website: www.esrdnet17.org Supported by Centers for Medicare & Medicaid Services. The opinions and conclusions expressed are those of the authors. They do not necessarily reflect CMS policy. The authors assume full responsibility for the accuracy and completeness of the idea presented. Contract #HHSM‐500‐2013‐NW017C.