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       in this issue              C H R O N I C            K I D N E Y           D I S E A S E
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                                                                                        associated with not keeping body...
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                                               Good Nutrition
                                              The Importa...
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                                F          I     T       N       E       S       S
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                K/DOQI: What Is It and Why Do We Need It?
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                    Living Long and Well with Chronic
                      Kidney Disease: Guideline 12:
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                       The Journal
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              K/DOQI Chronic Kidney Disease Clinical Practice
                         Guidelines for Children
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                       Two Years and Pressing On
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T R A N S P L A N T
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What You Should Know and Do About Chronic Kidney Disease
What You Should Know and Do About Chronic Kidney Disease
What You Should Know and Do About Chronic Kidney Disease
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What You Should Know and Do About Chronic Kidney Disease

  1. 1. W in this issue C H R O N I C K I D N E Y D I S E A S E HA DI T D SE OE Fitness AS S page 5 E M CH Good Nutrition EA RON page 4 N IC TO K Patient and Family Corner YO IDN page 7 U? EY The More You Know page 9 The Parent Connection page 11 Transplant Column page 13 The Renal Community’s Newspaper VOLUME 11 NUMBER 2 SPRING 2002 What You Should Know and Do About Chronic Kidney Disease By Theodore Steinman, MD A bout 260,000 people in the 1) Blood creatinine level –a routine kidney function. People who are U.S. are receiving dialysis test of kidney function that is done treated early do better than those who treatment for kidney failure. using a blood sample. Creatinine is a are treated late in the course of their Probably at least 10 times this chemical in the blood that comes disease. You also have to take part in number have kidney disease that will from the normal functioning of your care to do well. Below are some need dialysis during their lifetime. In muscle in the body. The kidney is the things that you can do to improve addition, about 13-15 million only organ that gets rid of this your overall health and, hopefully, Americans have some decrease in chemical. As kidney function gets your quality of life. kidney function. worse, the amount of creatinine excreted in the urine goes down and Early treatment can prevent or slow the levels in the blood go up. Ask your the progress of kidney disease and its doctor what yours is and what complications. Learn how kidney percent of normal kidney function disease is diagnosed and treated so you have that you can work with your doctor to 2) Urine protein –normal is stay as healthy as possible. negative, meaning that there is no protein in the urine. A positive test is DIAGNOSIS OF KIDNEY abnormal and further testing (such as DISEASE additional blood studies, collection of a 24 hour urine and maybe a kidney About 10 to14 percent of family biopsy) is needed because this can be 1) Change how you do things: members of people with chronic a sign of chronic kidney disease. ☛Weight loss: Consider speaking kidney disease are at risk for kidney 3) Blood pressure – "normal" is with a dietitian about a plan to disease. This number is based on about 120/80. High blood pressure lose weight if you weigh more results from screening a large (hypertension) is a level higher than than you should for your sex, age population for abnormal kidney 140/90. People with kidney disease and height. Your doctor can tell function, high blood pressure and and even those with normal kidney you what your ideal weight should protein in the urine. The people most function should have blood pressure be. likely to have abnormal findings were as close to normal as possible ☛Regular exercise: Plan to do an those in whom a family member had because high blood pressure makes exercise program at least four known chronic kidney disease. If kidney function worse. times per week for 20 to 30 there is no family history of kidney TREATMENT OF EARLY minutes per session. Your disease, then the likelihood of finding KIDNEY DISEASE exercise regimen can range from one of the above problems falls to one such things as walking, using a to two percent when screening a large Early treatment is better. Studies treadmill or working out with "healthy" group. Therefore, if your have shown that lowering high blood weights to playing basketball. family members are at risk, they should know their: pressure, decreasing the amount of ☛Diet: Your blood pressure can fall protein in the urine and lowering high just by eating a diet that doesn’t cholesterol levels in the blood can contain a lot of salt. Some people slow the decrease in kidney function have blood pressure that in those people who have abnormal increases more than others due to continued on page 3 This publication is a Family Focus Program of the National Kidney Foundation and is made possible in part through National Kidney an educational grant from , our Foundation® Title and Founding Sponsor of K/DOQI
  2. 2. 2 (K/DOQI), Chronic Kidney Disease: FROM THE EDITOR Education, Classification and Stratification, not only aids us in clarifying the terminology used, it goes a step further by establishing important medical criteria to aid in used. However, when someone used differentiating the five stages of these words, what exactly did it chronic kidney disease. mean? Was the individual in question at the very early stages of While this issue is devoted to impairment or was the person close chronic kidney disease (CKD), from to requiring dialysis? As you know, beginning diagnosis to requiring that is a very wide range. Historic- dialysis or transplantation, much of ally, less attention was paid to the the content focuses on the new segment of the population who had K/DOQI guidelines. I have great early signs of kidney disease. confidence that these guidelines will Greater attention was paid to aid tremendously in not only Karren King treating and educating those who assuring that we all "are on the would soon experience kidney same page" with the language we C hronic kidney disease….. failure and need to make a what do these words really use, but more importantly, as with treatment choice. the NKF guidelines that came before mean? For years you may have heard other words used to them, that the care provided to all The National Kidney Foundation individuals who have CKD will be describe various stages of kidney (NKF) set about attempting to disease. Many of us often used End greatly enhanced because of them. simplify the terminology used and to Stage Renal Disease, or ESRD, to make it more universal. Thus, the describe the point at which a person For you, the reader, the informa- words chronic kidney disease have tion provided in this, and every required either dialysis or a kidney been clarified to encompass all transplant to remain alive. While the issue of Family Focus, does no good stages of kidney disease, ranging if you simply read it and file it away. use of the words "end stage" simply from those who do not yet have referred to the fact that the kidney Don’t be passive readers or problems with their kidney’s recipients of care! Take this had reached a stage where it no function to those who do have some longer functioned well enough to information and use it. Ask level of kidney impairment (to those questions of your doctors and other sustain life, the words used sounded who require dialysis or a kidney much more ominous. When attempt- health care providers, make a transplant). The words kidney lifestyle change that will improve ing to describe the population of failure are being suggested to individuals who had kidney disease, your health, encourage your family replace the use of the term ESRD. members to be evaluated for signs of eventually requiring dialysis or The first new set of clinical practice transplantation, the terms pre- kidney disease. Make Family Focus guidelines under the NKF’s Kidney make a difference in your life! F F ESRD or pre-dialysis were typically Disease Outcomes Quality Initiative Karren King, MSW, ACSW, LCSW For the Editorial Board NKF Family Focus is published quarterly by the National Kidney Foundation If you’d like to Opinions expressed in this newspaper do not necessarily represent the position of the National Kidney Foundation contribute to the Editor-in-Chief: Nutrition Editor: Editorial Office: Karren King, MSW, Lori Fedje, RD, LD National Kidney Foundation National Kidney ACSW, LCSW Portland, OR 30 E. 33rd Street, Kansas City, MO Pediatric Editor: New York, NY 10016 Foundation, visit Barbara Fivush, MD (800) 622-9010 • (212) 889-2210 Medical Editor: http://www.kidney.org Wendy W. Brown, MD Baltimore, MD our Web site at St. Louis, MO Patient Editor: Editorial Director: Nursing Editor: Dale Ester Glendale, AZ Gigi Politoski Editorial Manager: www.kidney.org Bobbie Knotek, Sheila Weiner, MSW, CSW RN, BSN Social Work Editor: or call Plano, TX Mary Beth Callahan, Executive Editor: Fitness Editor: Tiffany Shubert, ACSW/LMSW-ACP Dallas, TX Sara Kosowsky Managing Editor: (800) 622-9010 MS, PT Emily Zelner San Francisco, CA Transplant Editor: Production Manager: to make your Linda Harte, RN, BSN, MA, CNN, CCT Sunil Vyas Kansas City, MO Design Director: donation as a Oumaya Abi Saab Family Focus reader. Family Focus Volume 11 Number 2
  3. 3. 3 associated with not keeping body What You Should Know and Do About Kidney Disease protein at normal levels. Your dietitian continued from page 1 can help you select these foods. high salt foods. Work with a 5) Blood cholesterol and other lipids 4) Anemia – Anemia occurs when dietitian to plan a low salt diet. (fats) in the blood may make kidney your red blood cells are in short ☛ Alcohol: Drinking alcoholic disease worse and cause heart supply. Red blood cells carry oxygen beverages can make your blood disease. This should be treated with a from your lungs to all your organs and pressure high. Men should have low fat diet and medication for tissues, providing energy for your daily no more than two small drinks a cholesterol. The goal should be under activities. When diseased kidneys no day and women one drink daily. 200 and for triglycerides it should be longer make enough of a hormone that under 150. You should know your tells your bone marrow to make more ☛ Smoking: Cutting down is not numbers for "good" cholesterol (HDL red blood cells, anemia can result. okay. You must stop completely. cholesterol, which should be greater Treatment may include a special diet, Smoking causes a narrowing of than 60) and "bad" cholesterol (LDL supplements and medication. your blood vessels that will cause cholesterol, which should be less than a higher blood pressure and less 120), and what they mean. blood flow to your kidneys. People WHEN KIDNEYS FAIL who smoke have a much greater 6) Blood sugar – If you have diabetes (also known as sugar diabetes), it is Making an access (fistula) to your chance of developing heart and important for your blood sugar to be blood vessels should be done at least lung disease, and these diseases as close to normal as possible. This six months before you need dialysis so make treating kidney disease usually means sticking to a strict diet, that it is ready when you need it. A much more difficult. controlling your weight and taking fistula is the preferred access because pills or using insulin. You need to it is associated with fewer complica- work closely with your health care tions from clotting and infection. If you team to help make sure your blood do not have an access in your arm sugar is not too low or too high. when it is time to start dialysis, you Diabetes is the most common cause of may need to be in the hospital and kidney failure and early treatment have a line for dialysis placed in a can slow down the progress of kidney blood vessel in your neck. Patients disease and help avoid eye disease who have to start dialysis as an and nerve complications, which can emergency usually have more difficulty result from diabetes. at least in the beginning than those who have been able to plan ahead for 2) Medications: Discuss blood Your kidney disease might get worse access placement. If at all possible, it pressure medicines with your doctor even with good care and the right is important for you to discuss the and find out what works best for you. medicines. Although the treatment placement of your dialysis access with If you develop side effects such as can not always stop kidney failure, it your doctor before you actually need dizziness, nausea, leg swelling, head- is important to know that treatment dialysis. Sometimes an AV fistula does aches or fatigue from your specific may slow the kidney disease and not "mature." That is, the blood vessels high blood pressure medicine, it is delay the need for dialysis or do not get large enough or strong important that you don’t simply stop transplantation. enough to use. Or the surgeon may taking it. Discuss the problem with examine the blood vessels and decide your doctor, who can suggest that an AV fistula doesn't work. The alternative treatment. COMPLICATIONS OF POOR surgeon may place a "graft" made of KIDNEY FUNCTION man-made material, a hollow artificial 3) Check your blood pressure 1) Bone disease – Calcium and blood vessel, that can be used for regularly: Ask your doctor or nurse to phosphorous are minerals found in dialysis. teach you how to take your blood pressure. Then take it at home, write it the body. The kidney helps keep levels normal and bones strong. The right In summary, treatment of chronic down and discuss it with your doctor. diet and medicine can keep the levels kidney disease may stop or slow the Many blood pressure readings over in normal range and decrease the speed at which kidneys get worse. time, including some taken outside of bone disease that can happen with You should know what treatment is the doctor’s office, will tell your doctor kidney failure. possible and talk with your doctor. what medicines you need in what dose A kidney doctor can help your to control your blood pressure. 2) Acid - As kidneys fail, acid made regular doctor take care of your by the body and that comes from food special needs. F F 4) Protein in the urine cannot only be is not passed in the urine. The a sign of chronic kidney disease; it can increase in acid levels, called Dr. Steinman is a professor of cause kidney disease to get worse. Ask metabolic acidosis, can affect your medicine at Harvard Medical School your doctor to check your urine for heart and appetite and make bone and the director of the dialysis unit protein. Some medicines, angiotensin disease worse. Treatment with bicar- at Beth Israel Deaconess Medical converting enzyme inhibitors (ACEI) bonate can make acid levels normal. Center in Boston. He is also a member and angiotensin receptor blockers 3) Nutrition – Malnutrition or of the Kidney Disease Outcomes (ARB), have been shown to decrease undernourishment typically occurs Quality Initiative (K/DOQI) Medical protein in the urine and can slow when kidney function falls below 25 Advisory Board. progress of kidney disease in percent of normal. Eating the right some people. foods can help stop major problems Family Focus Volume 11 Number 2
  4. 4. 4 Good Nutrition The Importance of Healthy Eating in Chronic Kidney Disease By Kathy Schiro Harvey, MS, RD, CSR A ccording to the recent prealbumin and transferrin levels are you eat and compare it to your National Kidney Foundation lower than normal. These are protein recommended level. (NKF) Kidney Disease substances in the blood, which build Outcomes Quality Initiative (K/DOQI) healthy tissues, carry iron and also The renal dietitian will make diet Chronic Kidney Disease (CKD) measure nutrition health. Food recommendations based on your Workgroup, over 13-15 million records can show that you are eating nutrition assessment. It is most Americans have reduced kidney less protein and fewer calories than important for people with CKD to eat function and over eight million of you need and that your intake of fats, enough calories to stay at a healthy these have CKD. The most important carbohydrates, minerals and vitamins weight. This may mean you need to health risk for those with CKD is the development of kidney failure and is out of balance. add extra foods to your meal plan or likely progression to the need for adjust the type of foods you eat, dialysis. This is despite the fact that When you have protein energy depending on your weight goals. In CKD itself is much more common malnutrition you have a greater addition, the dietitian will determine than kidney failure and has a much chance of getting ill, being hospital- your protein needs, based on your greater impact on the health and well ized and having health complications, level of kidney function and overall being of more Americans. To address such as fatigue, anemia and infec- health. It is important that you eat this problem, the K/DOQI CKD tions. Studies also show that when just the right amount of protein to Workgroup has written guidelines you have protein energy malnutrition prevent malnutrition but also to limit identifying the risks associated with you may also have more inflammation toxic wastes, which can affect your the loss of kidney function, which appetite. Besides calories and protein, (your body tissue’s response to injury) include the risks of poor nutrition. the renal dietitian can address other than when you are well nourished. This may be related to heart disease. areas of your diet that may need PROTEIN ENERGY adjustment to maintain good health, MALNUTRITION such as the type and amount of fats, minerals and vitamins you eat. If you Protein Energy Malnutrition have diabetes, the dietitian will develops in children and adults whose recommend the best meal plan for intake of protein and calories is not you to maintain healthy blood sugar adequate for the body's needs, and levels and may refer you to a diabetes those who have trouble absorbing educator for follow-up. vital nutrients or converting them to energy needed for healthy tissue If you have CKD you are at risk for growth and organ function. In fact one progression to kidney failure, but of the hallmarks of kidney failure is there are still steps you can take to anorexia, or loss of appetite and low regain and maintain your health. It is food intake. Research shows that important that you learn as much as when your glomerular filtration rate, you can about your kidney disease, or GFR, (a measurement of kidney stay in close contact with your function which can be calculated from health care team and take an active NUTRITION ASSESSMENT a blood test)—drops below 60 ml/min, role in your care. Learning about you may begin to eat less food. Why the nutrition risks of CKD and The K/DOQI CKD Workgroup this occurs is unclear—perhaps it is working with a renal dietitian to recommends that people with CKD your body’s way of limiting the plan healthy meals can be your receive a nutrition assessment after buildup of toxic waste products that first step in preventing protein their GFR falls below 60 ml/min. come from food. Or maybe you eat energy malnutrition. F F This assessment may include a less because you have other medical referral to a dietitian who has special problems that make you feel ill, such REFERENCE training in nutrition in kidney as diabetes, heart disease or infec- National Kidney Foundation K/DOQI Clinical diseases. Part of the nutrition Practice Guidelines for Chronic Kidney tions. Whatever the reason, the out- assessment should include measuring Disease: Evaluation, Classification and come of eating fewer calories and less your weight and comparing it to Stratification. Am J Kid Dis. 39(2):S17- protein is a higher risk of developing standard healthy weight tables. S31, 2002 Suppl 1 protein energy malnutrition. Your blood tests should include a Kathy Schiro Harvey has been a As food intake declines, you may measurement of albumin, which practicing renal dietitian for over 22 show signs of malnutrition. These is a marker of nutrition and years and is a member of the NKF may include less body fat and muscle, protein health. The nutrition K/DOQI Chronic Kidney Disease Work- usually seen as a drop in your weight assessment should also include a group. Kathy is chief renal dietitian at or less tissue around your eyes, review of your usual food intake Puget Sound Kidney Centers in shoulders, hands and arms. Blood or a dietary interview, to measure Mountlake Terrace, Washington. tests can show that your albumin, the amount of calories and protein Family Focus Volume 11 Number 2
  5. 5. 5 F I T N E S S Exercise to Help You Manage Your Health By Tiffany Shubert, MS, PT Remember to check with your physician before embarking on a new exercise regimen. S tarting dialysis changes your do every day. They might find it harder guidelines for how much you can life. Suddenly, everything you to get out for social and recreational safely do. do has some effect on how you activities. What is even worse is that feel. There are many new restrictions low fitness performance scores have My doctor has told me I can safely in your life, what you eat, where you been related to greater chances of (fill in the activity) ____________________ go, what time you have to do things. death. People with chronic kidney for _______ minutes. Many people stop doing activities they disease become inactive and weak for enjoy when they start dialysis, and many reasons: anemia, sickness and ❑ Choose which days and how long often, even when they feel better, they getting overloaded with fluid. There are you would like to exercise – and be forget to start doing the things that many challenges for dialysis patients consistent. they like to do. Once your health is to starting an exercise program, but it stable on dialysis, it is important to is known that people who become I want to exercise 3 days a week: remember that your life can begin inactive experience even more _______________, ______________, again, and there are things you can do problems with other parts of their _______________. physically and emotionally to feel bodies, including muscles, heart, better. Exercise is an activity that you lungs, digestion and nervous system. I want to exercise for______ minutes/ can return to when you are stable on session. We do know that people of all ages dialysis. Many folks on dialysis know benefit from regular exercise, and even that they want to start exercising, but ❑ Ask for your doctor to arrange a very small increase in activity can they are not sure how to begin. Just for you to talk with a physical ther- result in better health and quality of like the diet you follow on dialysis, apist or an exercise physiologist life. Researchers are learning about there are some do’s and don’ts with about a program that will be safe for people on dialysis and discovering that exercising. This article will tell you your muscles. If you start out slowly, they can exercise their heart (aerobic) what is known so far about exercise you should have only minor muscle and their muscles (strength training) and dialysis and will give you some soreness. Another risk if you are on to improve their physical performance, guidelines for starting your own dialysis is injury to bones or joints. to help manage depression and to exercise program. You should be able to protect your make daily activities easier to body from injury by starting out slow. accomplish. Common sense leads one to think that people with chronic I am meeting with a physical kidney disease who exercise will have therapist/exercise physiologist on a better chance of living longer, ___________ to talk about a program. healthier lives. The first step is usually the hardest. All exercise programs should have a People are afraid of starting a new long warm-up and cool-down period, activity. You don’t know how it may which will also protect you from feel: it might be too hard, it might not injury. feel good and you might sweat! The checklist below will give you informa- A modest increase in daily activity tion so that starting an exercise prog- and a minimum of 30 minutes of ram may not be so scary. Fill it out. aerobic exercise three times a week Remember you are doing this for your will result in better health. However, health, and go for it! try not to push yourself, know your own limits. ❑ Decide what you would like to do: walk, cycle, dance or go up your The goal is to have fun! It is also to stairs. Maybe your unit offers a prevent muscle weakness and get Doctors and health care providers program like stationary cycling or stronger. often now ask questions about how strength training either before or much or how little people on dialysis during dialysis. I will smile and laugh while exercise. There are many tests that exercising!!!! have been developed to determine how I would like to ______________________ well your heart and lungs work and to If you have pain or discomfort assess the strength in your arms and ❑ Talk to your doctor. The biggest during or after exercise, stop and legs. When people with chronic kidney risk for those with chronic kidney talk to your doctor. Do not start again disease are tested, their fitness scores disease is a problem with your heart. until you feel okay – remember, you are lower than those who do not have Heart disease often accompanies are in control! kidney disease. Low fitness scores also kidney failure. Most problems that suggest that people with kidney affect your heart, such as high blood 1. Warm Up: Time for your heart and disease may have a much harder time pressure, blood sugar management muscles to wake up for exercise! doing basic activities such as cooking, and high cholesterol, improve with cleaning and other things that we all exercise. But your doctor will have continued on page 16 Family Focus Volume 11 Number 2
  6. 6. 6 K/DOQI: What Is It and Why Do We Need It? By L. G. Hunsicker, MD B ecause there are differences people to decrease the chance of at medical meetings and made in the way that kidney developing kidney disease or to slow available over the Internet so that all doctors take care of those on its progress, and we have learned how health care workers can become dialysis around the United States, in to lower the risks of heart disease and familiar with them and use them as 1997 the National Kidney Foundation strokes, but all health care providers needed to take care of their patients. (NKF) began a program, the Dialysis are not yet using these methods. The NKF wants all health care Outcomes Quality Initiative, or DOQI, Clearly, it is important for people to professionals to give appropriate care to recommend to kidney doctors the know about kidney disease and that to those people with chronic kidney ways of taking care of people on there are ways to prevent it or slow its disease, to start their patients’ dialysis that had the best results for progress and to treat it properly at its treatments early and to know when the patients. This has been very earliest stages. to send someone to a kidney successful over the past five years. disease doctor. For example, the chance that a person The large numbers of Americans at on dialysis will die became much risk make it impossible for all of them lower as kidney doctors started to to see a kidney doctor about it. These follow these "best practice" or "best Therefore, the first new clinical K/DOQI ways of doing things" guidelines. Now practice guidelines developed under guidelines are the NKF has started another major K/DOQI, Chronic Kidney Disease: the first part of new program, the Kidney Disease Evaluation, Classification, and a four- Outcomes Quality Initiative, or Stratification—a program designed to part NKF plan K/DOQI. What is this all about? Why help all health care providers to attack the do we need a new program like this? recognize and diagnose kidney disease problem of early and to provide the best care for chronic kidney people as early as possible when disease. The “Studies have shown treatment has the most benefit—is other parts of that one in every nine now available. These K/DOQI the plan are guidelines say that two simple tests 2) a public Americans has kidney should be done on people, along with relations disease. In addition, a medical history and measurement of campaign to reach Americans at blood pressure. The first of these tests increased risk of kidney disease to another one in five requires only a sample of urine to look encourage them to be tested routinely, Americans are at risk for proteinuria, the second requires 3) the Kidney Early Evaluation for kidney disease only a single simple blood test to Program (KEEP) aimed at identifying check your serum creatine level. directly those with chronic kidney because of high blood disease or at high risk of developing it pressure, diabetes, older With this information, the doctor and referring them to their doctors can determine if a person has kidney and 4) an expanded education age or their race or disease, and if so, identify which of program to tell health care ethnic background.” five categories of seriousness the professionals about these K/DOQI individual fits into: kidney disease guidelines. We believe that the Since 1997, we have learned that present but kidney function normal; K/DOQI guidelines, together with the kidney disease is very common. kidney disease present and kidney other parts of this four part plan, will Studies have shown that one in every function decreased slightly, result in improvements in the care for nine Americans has kidney disease. In moderately, or severely; or kidney those individuals with chronic kidney addition, another one in five failure requiring dialysis or disease that are as great as those Americans is at risk for kidney disease transplantation. In addition, these that resulted from the DOQI program because of high blood pressure, K/DOQI guidelines suggest, for each that came before K/DOQI. And that diabetes, older age or their race or level of kidney disease, a series of is good news for all people with ethnic background. Most of the people other tests and treatments that kidney disease! F F with kidney disease or those at risk for doctors and patients should consider developing kidney disease don’t even to slow the progress of kidney disease, Dr. Hunsicker is a professor of know it. People with kidney disease to prevent some of the complications internal medicine at the University not only have a greater chance of of kidney disease that begin to appear of Iowa College of Medicine where kidney failure requiring dialysis or a very early and to lower the risks of he is also the medical director of kidney transplant; they are also at a heart disease and stroke. organ transplantation. much higher risk for heart attacks, heart failure and strokes. Over the These guidelines were published in past 10 years we have learned of February 2002 in the American several ways to diagnose and treat Journal of Kidney Diseases, presented Family Focus Volume 11 Number 2
  7. 7. 7 to manage your CKD as carefully as PATIENT AND possible, control your diet and fluid restrictions (when needed), and listen FAMILY CORNER closely to the health care team. Success is all about you! “How you react with Chronic Kidney Disease—Is It a Death Sentence? By Dale Ester CKD and its treatment options is up to you. I authored the Patient and Family You should realize that the committee Council article this issue because that made this decision of who would the topic of chronic kidney live and die did so based partly upon Life is what you dream disease (CKD) really hits close to their perception of the patients' value and worth to society. Typically those of it—make it great!” home for me. The type of support I find myself providing to others to people selected for dialysis were under learn to live with enthusiasm, even age 45, thought to be stable physically Dialysis keeps you alive. If you though their lives may be changing, is and mentally and employed.1 Rather consider CKD and dialysis as a death pertinent for those with kidney than shout when the committee chose sentence diagnosis, then any lack of disease regardless of the degree of to grant dialysis treatment to the control will diminish the personal severity. Sharing ideas and feelings patient with kidney disease failure, improvement you could achieve. No helps individuals to fully realize that the tears that were seen were often longer must a committee render a their lives are still meaningful even from the joy of realizing that death decision based upon your value to after being diagnosed with CKD. Daily due to a lack of dialysis was not society and family because almost schedules may have to change and forthcoming. everyone now is treated as worthy and priorities will most likely have to be entitled to treatment as part of being a revised differently than before since It seems primitive today. How times a legal resident of the United States. CKD can be demanding, but life and have changed in a mere three Be proud of your heritage! the spirit to live it well are still worthy decades! But history lessons should of your best personal effort. never be forgotten. How you react with CKD and its treatment options is up to you. Life Now compare the selection is what you dream of it—make it great! “It seems primitive committee process to the current situation and try to imagine: Why do 1. Price C: Is It Time Again for Patient Selection Criteria? Nephrology today. How times have some today view dialysis as a death News & Issues, February 2002, pp. sentence when patients who need changed in a mere dialysis treatment are provided the 18-20. F F opportunity to live well? These three decades! But thoughts, while understandable, are sometimes uninformed and mis- history lessons should guided. CKD is not a death sentence. Nor should dialysis treatment with never be forgotten.” any modality be considered anything A re you a patient, family member or less than the best and most effective a friend of someone affected by kidney You may be surprised to learn that way to adapt and compromise to disease or transplantation? in the 1960’s the treatment of dialysis changing conditions of simply growing D o you wish that you could do for kidney failure was not funded by older and living longer. something to make lives better for any government programs. There was kidney patients, transplant candidates no easy access to dialysis machines so CKD may create despair, but if you and transplant recipients? everyone who needed dialysis could seek to discover the good in the not be dialyzed. To deal with the diagnosis, the despair could be problem of having too many people replaced with gratitude by under- Make Your who needed dialysis to live and too few machines and staff to dialyze standing just how far dialysis and support treatment for kidney failure Voice Heard them, selection committees were have come in such a short time. formed to decide who would be Here’s to another 30 years of positive "suitable" to dialyze. Most committees changes in this medical field. We’ve used a person’s age, intelligence, come a long way! potential to be employed, finances, tax paying status, ability to cooperate Life can still be good. Attitude plays with the treatment, a psychiatric an important role in how you judge evaluation and a person’s medical your current condition, your physical Join the NKF Legislative Volunteer condition to help them determine who well-being and yes, even how you Network and help the National Kidney Foundation shape health policy to accept. Typically excluded were interact in daily events. To be those who had other major illnesses successful and enjoy the oppor- such as diabetes, which is now the tunities dialysis has to offer you by For details call 800-889-9559 most common cause of kidney failure. giving you life, remember to be eager Family Focus Volume 11 Number 2
  8. 8. 8 Living Long and Well with Chronic Kidney Disease: Guideline 12: Functioning and Well-Being By Beth Witten, MSW, ACSW, LSCW T he National Kidney Well-Being—focuses on changes in health conditions, such as diabetes, Foundation (NKF) recently patients’ quality of life over the course hypertension, anemia, bone disease finished a two-year project of kidney disease. and neuropathy (nerve damage), can that resulted in published guidelines also harm functioning and well-being. Many researchers have studied how for chronic kidney disease (CKD) for Doctors need to know who is at risk, kidney failure affects functioning and doctors and other health profes- treat other health conditions early and well-being. Only a few researchers sionals. These guidelines are now help those who experience problems have studied how earlier stages of available to help doctors identify those with functioning and well-being kidney disease affect functioning and who are at increased risk of develop- sooner. By knowing that these well-being. In the past, researchers ing kidney disease, and treat those problems happen earlier than they asked health care professionals how with CKD sooner. might have expected in the course of they believed patients functioned and kidney disease, they can find and coped with kidney disease. When The guidelines answer these correct problems sooner. researchers found that patients rated questions: themselves differently from how these • What are the stages of kidney This guideline suggests that doctors professionals rated them, researchers disease? ask each patient to complete one of began to put more weight on what • How many people fit in each stage the recommended surveys to find out patients reported. of kidney disease? from the patient’s perspective how • How does aging affect kidney kidney disease is affecting his or her function? The goal of this functioning and well-being. Using this • What makes people at higher risk information, health care professionals for developing kidney disease? guideline is to help will learn what problems develop, • What is the best way to find out if doctors and other care when they develop and what the kidneys are damaged? treatments help and which do not. • How can doctors identify and treat givers identify The goal of this guideline is to help those who have CKD sooner? doctors and other care givers identify problems earlier, treat problems earlier, treat them more • How can doctors treat such complications of CKD in adults as them more effectively effectively and help patients live high blood pressure, anemia, poor happier, healthier, more active and nutrition, bone disease, nerve and help patients live more productive lives. If nephrologists damage and problems with happier, healthier, and other physicians use these physical, emotional, social or guidelines, it will aid the National vocational functioning? more active and more Kidney Foundation in achieving its • How can we educate patients, vision of Making Lives Better. F F productive lives. professionals and the public about CKD to prevent more people from REFERENCE developing it or to keep those with National Kidney Foundation. K/DOQI This guideline is based on what CKD from getting worse? Clinical Practice Guidelines for researchers learned from patients with Chronic Kidney Disease: CKD about how worsening kidney Doctors and staff want to know Evaluation, Classification and function affects functioning and well- what causes CKD, how to diagnose it, Stratification. Am J Kidney Dis being. It focuses on: what stage of kidney disease a person 39:S1-S266, 2002 (suppl 1). • Symptoms and what the person is in and what problems develop thinks about his or her health because of it. However, someone with Beth Witten, a clinical social worker, • Physical functioning kidney disease may have different served on the K/DOQI Chronic Kidney • Depression and mental health questions. How will kidney disease Disease Evaluation, Classification and • Work, home management and affect my quality of life over time? Stratification work group and wrote the recreation What symptoms might I look for and guideline on functioning and well- • Social functioning. when? As I have more symptoms, how being. With over 20 years of will I feel about my health and life? nephrology experience, she established In study after study, as kidney Will I be able to work, keep house, Witten and Associates, LLC, and function worsened, patients reported enjoy leisure activities and visit with provides educational and rehabilitation more problems in all of these areas. my friends and family? How will consulting to clients including the Patients reported changes long before kidney disease affect my mood? The Missouri Kidney Program and the Life they had kidney failure. NKF wanted to answer all of these Options Rehabilitation Program. questions in its new guidelines. Other factors besides worsening Guideline 12—Association of Level of kidney disease can affect functioning GFR with Indices of Functioning and and well-being. Income, education and Family Focus Volume 11 Number 2
  9. 9. 9 T h e M o r e Y O U K N O W What’s New at NKF…? learned that early kidney disease can have information and programs to S erving the needs of patients and families affected by kidney be detected through special tests help educate you and your family and disease has always come first and that treatment in the earlier answer your questions about the for the National Kidney Foundation stages can slow the progression many issues you face. Suppose you (NKF). Through our many educational toward kidney failure. And, we now have an increased risk for developing and supportive materials and know that there are five stages of kidney disease because your close programs—like KEEP (Kidney Early kidney disease. relative has kidney failure or you have Evaluation Program, a screening diabetes. Or, suppose you are worried program to test those at greater risk What does all of this information about a loved one who has been for kidney disease), People Like Us, about kidney disease mean for you diagnosed with chronic kidney Live! (an interactive patient and family and your family? It means that disease. KLS programs and materials education program about kidney everyone—including patients and are aimed at helping all individuals at disease) and RISE (Rehabilitation, professionals—is better able than ever any stage of kidney disease and those Information, Support and before to tackle the challenge of who are at increased risk for develop- Empowerment, a rehabilitation identifying and treating CKD, and the ing kidney disease (these may be your program to help those with kidney NKF is better prepared to educate and family members). It is the NKF’s goal disease return to meaningful support both patients and profes- to have materials targeted at the activity)—we have been able to sionals. To help us meet the challenge specific stages of kidney disease so accomplish this successfully. As we of educating even greater numbers of that a patient can easily locate infor- grow in our knowledge, we continue to people, including those who are at mation specific to his or her stage. learn about the best ways to offer increased risk for kidney disease as Most important of all, understanding programs and services to ensure that well as those who have CKD, the NKF your disease and knowing how to the needs of people affected by kidney has created the K/DOQI Learning manage it will help you stay healthy disease are being met. System or KLSTM. and get the proper care through early detection and treatment. Even if your With the development of NKF’s KLS means that the NKF will have kidney disease does progress, you will K/DOQI (Kidney Disease Outcomes information on chronic kidney disease have the information you need to Quality Initiative) and the creation of to support and educate you no matter make the best treatment choices for the Clinical Practice Guidelines for how mild or severe your kidney you and your family. Chronic Kidney Disease (CKD), we now disease is. For example, you might be in the very early stages of chronic Other K/DOQI clinical practice have more information about all kidney disease and having problems guidelines are currently under aspects of kidney disease. We know with high blood pressure or anemia. development. For more information that CKD is a worldwide public health Learning about how you can best about K/DOQI and KLS, contact the problem. We also know that the rate of manage these problems to help slow NKF at 1-800-622-9010 or visit our kidney failure is rising and that there the progression of your disease would Web sites at www.kidney.org or is an even higher rate of CKD than be of interest to you. The NKF will www.kdoqi.org F F earlier reports have shown. We have What is your stage of kidney disease? Stage Description Glomerular Filtration Rate At increased Risk factors for kidney (GFR) More than 90 risk disease (e.g., diabetes, high blood pressure, family history, older age, etc.) 1 Kidney damage (protein More than 90 in the urine) and normal filtration rate 2 Kidney damage and 60 to 89 mild decrease in filtration rate 3 Moderate decrease 30 to 59 in filtration rate 4 Severe decrease in 15 to 29 filtration rate 5 Kidney failure Less than 15 (dialysis or kidney transplant needed) Family Focus Volume 11 Number 2
  10. 10. 10 The Journal By Olive Goodman MAILBOX I read an article by Stacy Colona in the Ladies Home Journal that keeping a journal and writing about a difficult or painful event in your life accelerates the Dear Editor: coping process and can improve your mental and physical health. In your summer 2001 issue of Family Focus, the Renal Community’s Newspaper, Volume 10, I’ve found this to be true. Just last June I had to go on Number 3, page 4, there is a big headline, kidney dialysis. This was a shocker to my system! I never "Kidney Disease Caused by Chinese Herbs" above dreamed I had this trouble. My dialysis is a three-hour the article written by Marc E. DeBroe, MD, PhD. treatment regime, three days a week. Now how much Would you please ask whoever writes these traveling can I do? None. It is so confining. It leaves me tired headlines to read the article first? On page 3 it and needing a nap. That’s something I never did—nap in says "….. chemical used……20 years….not the daytime. On the machine I’d have cramps, get sick and caused kidney disease in any of these patients." my blood pressure went way down and I’d have to lay flat, On page 4 it reads "…..patients who developed which was frustrating. kidney diseases also took…..fenfluramine and diethylpropion….." So after I started writing in the journal about how difficult it is, I find it is easier. I’ve had six treatments with Of course you need to be careful what you no trouble. I’ve been warmer and not asking the nurse, take! False and misleading headlines/articles "How much longer?" I now watch TV, listen to music, knit from an organization like you cause unnecessary and sometimes nap. I have found that if I want I can confusion. Can we really trust what you tell us? vacation and have treatments there. My center will make appointments for me. Isn’t that grand? I plan to go to Sincerely, Branson, Missouri next summer. Robert Johns There are 16 other people on dialysis with me and I am Dear Mr. Johns: now involved with them. They are a special part of my days. This gives me a positive attitude instead of frustration over Thank you for your letter. We apologize my own feelings. I sometimes ride senior transportation if you found this particular title misleading. We with two others, and we visit as we travel back and forth. do our best to assure that the information That is a bonus. provided in Family Focus is always accurate. We definitely believe that the readership can trust I am springing back. I look forward to each day again. I what is printed. sew at home on off days. I’m glad to be adjusted and cheerful again. My nurses are wonderful. Also, my kidney Sincerely, doctor, my social worker and my family and friends are so Karren King helpful. So again, life is good. The treatments keep me alive. Editor I follow the rules and keep a journal. I recommend it. I think it will be a help. F F Olive Goodman was a dialysis patient from Illinois. She passed away on September 4, 2001 at age 82. There are lots of reasons to donate a vehicle. Funding kidney research and patient care are only a few. Make your car a Kidney Car. Cars that save lives. For more information, call 1-800-488-CARS. Family Focus Volume 11 Number 2
  11. 11. 11 K/DOQI Chronic Kidney Disease Clinical Practice Guidelines for Children By Katherine Barth and Susan Furth, MD, PhD T he National Kidney based on kidney function. This is Guideline 6 recommends checking the Foundation (NKF) initially measured using a test called the urine of pediatric patients with CKD, developed a set of clinical Glomerular Filtration Rate (GFR—a as well as performing special imaging practice guidelines for taking care of measure of your kidney function). studies such as ultrasound and CT kidney dialysis patients in 1997. This As kidney function worsens, the GFR scan. This guideline also states that was called the Dialysis Outcomes decreases, and a very low GFR means children who have a higher chance of Quality Initiative (DOQI). It was hoped a very severe CKD. The new having kidney disease should be that these guidelines would guidelines separate the stages of checked using these urine and standardize dialysis procedures for chronic kidney disease for pediatric imaging studies. Children who have a people on dialysis. DOQI became and adult patients. higher risk of having kidney disease extremely successful, and the include those with hypertension, Guideline 4: Estimation of GFR diabetes or a family history of urologic guidelines became widely known. The new guidelines say that, or kidney disease. "Estimates of GFR are the best overall A little over two years ago, the NKF indices of the level of kidney The K/DOQI Clinical Practice reexamined DOQI and its widespread function." Therefore, it is very Guidelines for Chronic Kidney Disease, success and decided there was a need important that the GFR is correctly in addition to the previously to expand the guidelines to include all calculated. The guidelines stress the published DOQI guidelines, were people with chronic kidney disease importance of using a formula, which created by the NKF to help make sure (CKD), not just those on dialysis. The takes into account body size. In that each patient receives the best plan was to make sure that the children, the formula recommended to and most appropriate care. The NKF guidelines existed for individuals with calculate GFR is the Schwartz or also hopes these guidelines improve chronic kidney disease even before Counahan-Barrett formula. The the quality of care for both pediatric dialysis needed to be started. As a Schwartz formula is the most widely and adult patients with CKD long result, the Kidney Disease Outcomes used in the United States. This before they require dialysis or Quality Initiative (K/DOQI) was formula is based on the child’s age, transplantation. In addition, the new created. A group of professionals from height and creatinine level in the guidelines look differently at children all parts of the country joined together blood. Creatinine is a waste product and adults and will help doctors to complete the first new guidelines that is normally excreted in urine, but assess and manage pediatric patients under K/DOQI. Pediatricians were gets elevated in the blood when with CKD. included in the workgroup to assure kidney function is low. Different that the new guidelines were formulas are used to calculate kidney In summary, there are four areas in appropriate for children. function for adults. It is important the new guidelines that specifically that pediatricians use the right apply to children with CKD. They are The result of this effort was to formula to calculate kidney function listed below: create a new set of guidelines for in children, so they can know the 1) The five stages of CKD are defined patients with CKD called the Clinical actual level of kidney function. for pediatric patients. Practice Guidelines for Chronic Kidney Disease: Evaluation, Classification and Guideline 5: Assessment of 2) The way to correctly calculate Stratification. These new guidelines Proteinuria kidney function in a child is help care givers evaluate and manage People have proteinuria when they described. adult and pediatric patients with have increased levels of protein in 3) The correct method of evaluating CKD. All of these new K/DOQI their urine. Proteinuria can be a sign proteinuria in a child is detailed. guidelines do not apply to children. of early kidney damage or of 4) How to evaluate a child with CKD However, the ones that do (guidelines decreased kidney function. Guideline is explained. F F 1, 4, 5 and 6) should help care givers 5 provides instructions for obtaining take care of pediatric patients with good samples of urine in children so Katherine Barth is an under- chronic kidney disease. that the protein level can be graduate student at Johns Hopkins measured correctly. It states that the University studying behavioral biology K/DOQI Chronic Kidney Disease best urine sample to look for protein with plans for medical school. Dr. for Pediatric Patients: is the first one of the morning (just Susan Furth is a pediatric nephrologist Guideline 1: Stages of Chronic after the child has woken up). at Johns Hopkins University School of Kidney Disease Medicine and served on the pediatric This guideline separates the degree Guideline 6: Additional Markers of work group for the NKF K/DOQI of CKD in children into five stages Chronic Kidney Disease Clinical Practice Guidelines on Chronic (stage one being the most mild stage This guideline lists other tests that Kidney Disease. and stage five being the most severe), help to evaluate CKD in children. Family Focus Volume 11 Number 2
  12. 12. 12 Two Years and Pressing On By Mariann Burkett I am just completing my second year on dialysis and there to inform what a change it has been. My first year was like a you of new rocky road, getting attuned to the new venture in my literature and life, numerous hospital visits and reading how awesome seminars that dialysis was. Many days I was in “limbo,” not knowing will make you what the next day held. feel more comfortable on But my second year changed for the better. At the unit I dialysis. developed strong friendships with staff and patients which were refreshing and many a day encouraging. At the end of 2. Watch your my first year I was fortunate enough to attend a patient diet, watch education seminar. What an eye-opener that was! I learned your liquid so much about improving my life on dialysis that it was intake and phenomenal. I learned about my diet, the foods that were take your important to eat and those that I should stay away from. medication. Finally, with the help of a better diet and medication, my Mariann Burkett anemia improved and I could maintain a hemoglobin level 3. Be aware of that made me feel alive. your blood levels. Know the meaning of BUN, Creatinine and KT/V. When I had renewed strength, I began to feel very bored. I realized I needed to get busy. After much thought I 4. If at anytime you need help, the staff at the unit are decided to volunteer at a senior center. They welcomed me there for you. Also, get acquainted with your End with open arms, and being able to help to cheer other Stage Renal Disease Networks. people was a blessing. What is this all about? Dialysis is not sitting in a chair three times a week. It entails much 5. Look at dialysis as the rising sun. It brings the more. sunshine into your life. Here are some tips that made my second year a success. I hope they help you, too! Last but not least, my faith that my health would improve and my family and friends made life so 1. Read and inform yourself about every aspect of meaningful and beautiful. dialysis. It is an everyday pursuit. Look for the posters and pamphlets in your unit. They are always Happy Dialysis. F F CAR TO O N O R N E R Denise Perella is a dialysis patient in Waynesburg, PA. Family Focus Volume 11 Number 2
  13. 13. 13 T R A N S P L A N T R The Timing of Transplantation By Linda Harte, RN, BSN, MA, CNN, CCTC A I f you develop kidney failure transplant before starting dialysis less for a patient to be on the wait very suddenly, having no is called preemptive transplanta- list. Your doctor will discuss the previous knowledge of kidney tion, and it is done frequently. results of this test which is N problems, you may not have a choice of what type of treatment to Your doctor will refer you to a transplant center to talk with the performed regularly on patients with kidney failure. transplant team to find out more S have. The most important concern is to get you out of danger and about it. If you have a relative or As soon as you have finished your evaluation by the team, are preserve your health as soon as friend who has expressed an found to be a good transplant P possible with some form of dialysis. After dialysis begins, then interest in being a donor, encourage that person to go with candidate and meet the UNOS criteria, you can be placed on the you can be presented with the you when you meet with the team. (cadaveric/non-living donor) L options for treating kidney failure: hemodialysis, either at home or in Most transplant teams consist of a transplant surgeon, nephrologist waiting list. Your place on the list is determined by points. One way a center, peritoneal dialysis and who cares for transplant patients, A transplantation. As a member of your health care team, you need to social worker, financial specialist and a transplant nurse. you accumulate these points is by being placed on the list as soon as possible because points are added find out as much as possible about N each option to help make the decision that is the best for you. to your "score" for every day you have been waiting. You also get points by how close your match is T If you have been followed by a nephrologist (kidney specialist with the non-living donor. Ask your transplant coordinator for more details on the point system. doctor) before you need to begin Again, the sooner you start your dialysis you have hopefully had testing to be a transplant time to learn about medications candidate, usually the quicker you and a diet to help delay the can be transplanted, even before progression of kidney disease and starting dialysis. the need for these treatments. You should also be able to talk with a If you have a living donor, you nurse educator, a nutritionist may not ever need to go on the and/or a social worker for more waiting list. You do not have to information about the treatment All transplant centers must follow the same UNOS criteria. In options. Talking with other people comply with regulations to assure other words, you can be trans- who have been treated by one of that transplantation is safe, fair planted with a creatinine clearance the treatment options can be one and accessible to all candidates. a little above 20 ml/min. It also of the best ways to learn about it UNOS, the United Network for depends on when your doctor feels first-hand. If your doctor thinks Organ Sharing, is the contracted is the best time for you. It is that transplantation is an option agency that oversees transplanta- possible for you and your donor to for you, talk with someone who tion in this country and has start testing at the same time. If has had a transplant. The doctor, developed the criteria for placing you desire, your transplant can transplant nurse or social worker patients on the waiting list for a certainly take place before needing can arrange this. non-living donor kidney. Your dialysis because everything can be education about transplantation timed; that is, when you have If you decide that transplanta- and evaluation for a transplant reached the point that you need to tion is the treatment of choice for can start at any time you desire, start some type of treatment, your you, do you have to wait until you but you cannot be placed on the donor is ready. have started dialysis before waiting list for a non-living donor pursuing the option of transplan- kidney until your kidney function It is to your advantage to tation? In the past, this was meets UNOS criteria. UNOS states participate in deciding on your usually the case, unless you had a that the creatinine clearance (a treatment options, including kidney family member who was willing to test that measures how much transplantation, with your health be tested to be a donor. Now it is kidney function you have left) and care team. Talk with your kidney certainly possible to be trans- is done on a 24-hour urine doctor and transplant team if this planted without starting dialysis. collection, must be 20ml/min or option sounds right for you. F F When your doctor discusses the

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