THIS ISSUE

TOOLBOX FOR LIFE, PART I: A Publication of the National Foundation Vol 13, No 1 • Winter 2004 Your Life in the Unit Ideas and information to help make the time you My Experience: A Men’s Group spend in the dialysis unit as positive and productive as in the Dialysis Unit it can possibly be for you. By Craig Thompson Inside this issue: YOUR ACCESS

Your access is your life- line, making dialysis treatment possible. Learn about the differ- ent types of vascular access, and how to take care of yours. —Page 3

SAFETY CHECKLISTS

Take charge of your care! These four simple checklists will help you make sure some of the most common mistakes never happen. —Pages 8–9

FAMILY FOCUS VOICES For Craig Thompson (second from left), taking part in a men’s group at his dialysis clinic was “worth its weight in gold.” He Read this issue’s special is pictured here with two other members of the men’s group, as well as Cheryl Weller, MSW, (Left) and John Long, MSW, question, then log onto (right), social workers at the San Diego dialysis unit where the men’s group formed. the Internet to share your thoughts with the ORWARD THINKING IN MY DIALYSIS CLINIC LED helped all of us grow and want kidney community! to fight for another day. The —Page 10 TO A MEN’S GROUP THAT IS DETERMINED TO camaraderie generated has led MAKE A DIFFERENCE. We gathered in a back room of F to the attitude of “Leave no the dialysis floor to discuss our issues and concerns. It was an man behind!” The social work- opportunity to speak out about how we truly feel about our kid- ers at our clinic have been “top 30 East 33 New York, NY 10016 ney disease and how it has affected our lives. drawer” in terms of listening to I encourage any man to dig Each time we met, we came our men’s group and addressing deep within himself and realize, earlier and stayed later! We our concerns. I applaud their rd rd Street if you are chronically ill, you were able to explain our situa- forward thinking and their will- are not alone. This realization tions to each other. But the ingness to view their patients became clear as soon as the most exciting part for me was not just as patients, but also as door was closed. We started knowing that I was not alone people—flesh and bones, packed talking about everything under and that the things I was expe- with multiple emotions that the sun. For brief moments I riencing were not just happen- sometimes seem to collide all at would break away from the ing to me. the same time. It has led all of conversation only to see that us to a better understanding of is an uphill those who came reluctantly ourselves and our treatments.

NON-PROFIT ORG. battle no matter how you cut it, looked as if there was no other It has given the social workers U.S. POSTAGE but being in this men’s group P Shakopee,

ri o 211 ermit No. place they would rather be. Continued on page 2 P AID This publication is a part of the National Kidney Foundation’s Kidney Learning System (KLS)™ and is MN made possible through an educational grant from . FROM THE EDITOR would imagine that those of you outside of the dialysis unit better by I who dialyze at a dialysis unit often helping you cope with the challenges feel like it is a part-time job. When you you may face with such things as personal consider the time it takes to get to and relationships, meal planning or employ- from the dialysis unit, the time it takes to ment. You may share your thoughts by prepare to go on and come off of the mailing them to us or by going to machine and the time you www.kidney.org/patients/voices.cfm actually dialyze, it is indeed close to 20 You are the ones who live with kidney hours per week! It is precisely because of failure and its treatments every day, and this that we decided to dedicate this issue we would love to share your insights with Family Focus all of our readers. Please let us learn from of to information that we Karren King hope will help make the time you spend in you by responding to our question. the dialysis unit as positive and produc- upon which the cover story is based know I want to thank each and every one of tive as it can possibly be for you. If you that the article did not review all of the you, those on dialysis or transplanted, dialyze at home with either hemodialysis information that the survey covered. The family members of individuals with or , do not feel as if this PCT is included in several of the questions chronic and the health issue has no information for you, as addressing issues about staff in the dialy- care staff, for continuing to send us such indeed it does. Be sure to read about the sis unit, and this information, as well as wonderful articles and poems about your Dialysis Patients’ Bill of Rights, things other points not covered in the cover story, experiences and feelings. Much of the pos- you can do to prepare for a transplant and will be included in an article that will be itive feedback we receive from our readers any additional article that you find is rele- written for future publication in a focuses on the inspiration they receive vant to your particular situation. journal. from reading what you are submitting. We do our best to publish what you send I hope that you have taken the time to The next issue of Family Focus is enti- as soon as we can, so please keep them read our most recent issue of Family tled, “Toolbox for Life, Part II: Dialyze to coming. We do love to hear from you! Focus on communication. I want to point Live, Don’t Live to Dialyze.” While this out that while the cover story did not current issue mainly focuses on life in the On behalf of the Family Focus focus specifically on the role of the dialysis center, the next issue recognizes Editorial Board, we want to wish every- Patient Care Technician (PCT), the that although dialysis is a part of your life, one a happy and peaceful 2004! Editorial Board did not forget this very it does not define your entire life and important person who helps make every- being. With that as background, I want to Karren King thing in the dialysis unit run smoothly. encourage you to let us know your For the Editorial Board Those of you who completed the survey thoughts about what has made your life

My Experience… from page 1 for all of us. Not only does it ben- NKF Family Focus is published quarterly efit us as patients, it benefits the by the National Kidney Foundation. an inside look at what we truly staff to learn more about us as Opinions expressed in this newspaper do experience as men, not only at the patients and as people. The thera- not necessarily represent the position of the National Kidney Foundation dialysis clinic, but also in our pri- peutic energy produced by this vate lives. group was worth its weight in gold. I made EDITOR-IN-CHIEF: Karren King, MSW, ACSW, LCSW I want to tell you Kansas City, MO many new friends who more, but I cannot FITNESS EDITOR: Pedro Recalde, MS, ACSM share my same con- San Francisco, CA put in words what cerns. We listen to one MEDICAL EDITOR: Wendy W. Brown, MD, St. Louis, MO this group has done NURSING EDITOR: Bobbie Knotek, RN, BSN, Plano, TX another and not only NUTRITION EDITOR: Lori Fedje, RD, LD, Portland, OR for us. If there is not hear what is said but we feel it. PATIENT EDITOR: Dale Ester, Glendale, AZ already a group like this in your PEDIATRIC EDITOR: Barbara Fivush, MD, Baltimore, MD Beginning the men’s group was a unit I encourage the men on dial- SOCIAL WORK EDITOR: Mary Beth Callahan, ACSW/LMSW- great move and should be a model ACP, Dallas, TX ysis to start one and to adopt the for all clinics. I learned that I may TRANSPLANT EDITOR: Linda Harte, RN, BSN, MA, CNN, CCT “Leave no man behind” attitude. Kansas City, MO have kidney failure, but kidney Our group has been so successful ESRD NETWORK LIAISON: Roberta Bachelder, MA failure does not have me. Until Woodbridge, CT that we have planned events to next time, my friends, stay EDITORIAL OFFICE: NATIONAL KIDNEY FOUNDATION share our experiences and ideas rd strong! 30 E. 33 Street, New York, NY 10016 with other patients and direct (800) 622-9010 • (212) 889-2210 www.kidney.org them to the resources they need About the Author e-mail: [email protected] in order to have a clear under- Craig Thompson, of San Diego, EDITORIAL DIRECTOR: Gigi Politoski standing of their illness and how received a kidney transplant in EDITORIAL MANAGER: Sheila Weiner, LSW, CSW to address their concerns. December 2003. EXECUTIVE EDITOR: Sara Kosowsky MANAGING EDITOR: William Comerford Working with the social work- Editor's Note: Women's groups and PRODUCTION MANAGER: Sunil Vyas ers has been a win-win situation co-ed groups at dialysis units are DESIGN DIRECTOR: Oumaya Abi Saab equally encouraged.

2 FAMILY FOCUS • Volume 13, Number 1 V A SCULAR ACCESS

n order for hemodialysis to Taking Care of Your Graft I be done, there has to be a Access Options for Dialysis Try never to sleep on the arm way for to go through the By Randy Breiterman-White, MS, RN, CNN and William Nylander, MD that has the graft. Any time you (dialyzer) so get in a position where your arm poisons can be removed, and Understanding your vascular access is a first might “fall asleep,” blood circula- for the cleaned blood to be step toward getting the best care possible. tion stops and the graft will stop returned to the body. This is working. For the same reason, do done through what is called a pull on the . If your catheter is in not wear anything that has tight “dialysis access” or “vascular access for your neck or chest, wear a buttoned shirt sleeves or let anyone, even a doctor, take dialysis.” There are three different types of when you go to dialysis so the staff can use your blood pressure or stick you for blood access, and the type that is used depends the catheter without pulling on it. in your graft arm. You should always try on how quickly dialysis has to be done. We to wash your graft arm with soap and will describe the kinds of dialysis access Problems to Report when you get to dialysis and before that are used, why each is used, the good Let the dialysis nurse or doctor know if needles are placed to help prevent infec- and bad things about each one, how to your catheter is hurting you, if you see any tion. Your dialysis nurses and technicians take care of each and what kinds of prob- blood or other fluid on the bandage, if you will teach you how to “feel the thrill,” lems you should tell your dialysis doctor or feel ill or have a fever. Let them know if which is a vibration in your graft. Do this nurse about. you have pulled or tugged on your catheter every day when you get out of bed in the by mistake so it can be examined closely. morning and before you go to sleep every DIALYSIS CATHETER Also, tell the nurse or doctor if someone night to make sure your graft is working. A dialysis catheter is like a big intra- else used the catheter (even though you venous (IV) needle like the kind you might tried to prevent it). Problems to Report get in your arm for medications when you You know your graft the best. Let the are sick in the hospital. This is used when DIALYSIS GRAFT dialysis nurse or technician know if some- you need dialysis either today or in the A dialysis graft is a more permanent kind thing feels different. Report any redness, next few days and do not have a perma- of dialysis access. It may be called a “gore- swelling, oozing or bleeding. Let them nent dialysis access yet. You might also get tex graft,” “synthetic access,” “shunt” or know if you feel ill or think you have had a a catheter if your permanent dialysis just “graft.” This is often used if your own fever. If you notice the thrill is gone, call access does not work and you need a way veins are very small. It is a piece of man- the dialysis clinic as soon as possible. The to dialyze until you get a new permanent made material shaped like a plastic straw. It sooner it gets reported, the easier it is to access. A doctor will put the dialysis is very bendable and soft. A surgeon inserts fix and the easier it is to avoid a dialysis catheter in the side of your neck, in your it under the skin in your arm, either below catheter. chest below the collarbone or in your or above the elbow in a way that the dialysis groin. The decision nurse or technician can put dialysis needles ARTERIOVENOUS FISTULA FOR DIALYSIS Usually this dialysis access is called about where to place in it just like starting an IV needle. the catheter depends on a “fistula.” Sometimes you may hear the how long the catheter The Good and Bad about term “AVF,” “AV fistula,” “native vein has to remain in place. Dialysis Grafts fistula,” “native” or “shunt.” This is the best kind of dialysis access, because they Grafts are easy to use and are usually can last for so long. Unfortunately it can- The Good and Bad ready as soon as the surgical swelling in not be placed in about Dialysis your arm goes down. everyone. A fistu- The good thing about a catheter is that This usually takes la is created by it can be placed and removed easily and two to three weeks. A joining together used right away. Unfortunately, catheters graft can be placed in your own native get infected easily, do not always work as almost anybody. They arm vein and well as they should, are often uncomfort- usually work very well and allow good dial- artery in an oper- able, have to be kept clean and dry and ysis treatments. Each time you dialyze, a ation. When it is can scar the vein they are in, so that vein dialysis nurse or technician will put two ready to use, the dialysis nurse or technician does not work for a dialysis access if you needles in your graft. Unfortunately, will place dialysis needles in your arm just need it later. because it is artificial, when dialysis is fin- like starting an intravenous or IV needle. ished and the needles are removed, the Taking Care of a Dialysis Catheter hole will not heal (remember, it is man- It is important to keep the catheter site The Good and the Bad About made.) After needle sticks for many dialysis clean by keeping a bandage on it all of the an AV Fistula treatments, there will be a lot of holes on time. The staff in the dialysis clinic will AV fistula surgery does not make your the graft. The graft may need to be replaced change the bandage every time you dialyze. arm swell too much and does not hurt very in the operating room once every year to Only the dialysis team should be using your much; they do not get infected very often year and a half. Also, your graft can get dialysis catheter. Do not let anyone else, and, with good care and careful needle infected if your arm is not cleaned well even a doctor or nurse, use your dialysis sticks, can last for years. Unfortunately, before the needles are placed for dialysis. catheter unless it is an emergency. You it takes three to four months for the vein should wear clothing that will not tug or to get big and strong enough to use for Continued on page 4

FAMILY FOCUS • Volume 13, Number 1 3 NUTRITION o you ever feel like you are another option to help keep Drunning from dialysis treat- Eating on the Run meals and snacks on a regular ments to doctor’s appointments schedule. For example, say you By Jamie Shish, RD, LD, ATC/L and other commitments without leave for treatment at 10:30 am. a break to eat? Starting dialysis It will be much easier to meet your nutritional You may eat breakfast around is certainly a lifestyle change; needs if nutritious food is readily available. 7:00 am, have a mid-morning spending 12 or more hours a snack around 10:15 am, and a week at dialysis is like working a and cookies, The fol- mid-afternoon snack at 3:30 pm. part-time job. You may feel that is what lowing are a pressed for time until you can you are going few snack Mid-day snacks should be figure out how to work every- to eat when ideas for prepared ahead of time so they thing into your schedule. You you are hun- eating in the are available on the run. For may think that it would not gry. If, on the unit that are example, make a sandwich in hurt to miss a few meals as one other hand, neat and the morning cut it in half and way to save time. In fact, your you have pre- nutritious: keep it refrigerated. Keep nutrition could not be more washed fresh acceptable fruits and important than when you are on grapes, left- 1. Use an insulated lunch bag vegetables washed dialysis. Proper nutrition is nec- over turkey with an ice pack to keep and ready to eat. essary for your bones, muscles, and rice in food cold. Store leftovers in energy level and teeth, and can 2. Pack hand wipes to wash single serving Keep acceptable fruits and even lower your risk of infection. hands before and after microwaveable con- vegetables washed and ready to tainers ready to be Your body likely needs more eating. eat, so they may be a first choice re-heated for mid-day calories and more protein on 3. Pack napkins to keep your when you feel like a snack. snacks. If you get dialysis than it did before you hands and area clean. half of a hungry, your food started dialysis, because you 4. Pack a straw if drinking is your refrigerator, there is a bet- turkey will be ready for you! may lose some protein in treat- difficult while in a semi- ter chance you will choose one of sandwich, ment, particulary peritoneal reclined position. Your body will those instead. bite size dialysis. Your body stores and 5. Pack a snack that is neat. thank you for eating salt free uses protein to help fight infec- Do a little “food” research (Barbeque ribs are not a nutritious meals and crackers, tions, for energy and for build- concerning your unit and your good idea!) snacks by feeling half of a ing and repairing muscle tissue. transportation to and from the 6. Remember your more energetic, fight- bagel with If you are taking medication for unit. Ask your unit manager or binder. It is important for ing off infections and cream it may be even more dietitian if snacking is permitted keeping your lab values on keeping bones and cheese, cot- important to eat properly. at the unit. Some units may target. muscles strong even tage cheese, Diabetic medication works to allow a can of nutritional sup- when you are living one can of nutritional supple- lower blood sugar, and without plement or a sandwich. If you life on the run. ment or one protein bar (ask eating regularly scheduled meals use a transportation service, ask About the Author your dietitian which one would and snacks there is a risk your if you may have a snack during Jamie Shish, RD, LD, ATC/L is be best based on your personal blood sugar may go too low. the ride to treatment or during a Registered Dietitian working medical history), grapes, apple- the ride home. in an outpatient dialysis center It will be much easier to meet sauce and tuna salad. your nutritional needs if nutri- If snacking at your unit or in Illinois. Jamie is also a tious food is readily available. If during transit is permissible, If these options are not avail- Licensed Athletic Trainer and the only quick and easy things read the tips in the box below. able to you, planning meals has a bachelor’s degree in to eat in your kitchen are chips around treatment times is Kinesiology.

Access Options for Dialysis thrill” in your AV fistula. Do the easier it is to fix and the Continued from page 3 this every day when you get easier it is to avoid a dialysis out of bed in the morning and catheter. dialysis. In order to make the never to sleep on the arm that before you go to sleep every vein grow big and strong, you has the AV fistula and do not night. About the Authors will have to do arm exercises wear anything that has tight Randee Breiterman-White MS, that the dialysis staff will teach sleeves or let anyone, even a doc- Problems to Report RN, CNN, is Clinical you. The exercises are really tor, take your blood pressure or Let the dialysis nurse or Specialist/ Case Manager of easy. If your fistula is not yet stick you for blood in your AV technician know if something nephrology at Vanderbilt ready when you need dialysis, fistula arm. Wash your AV fistu- feels different. Report any red- University Medical Center. you may temporarily use a la arm with soap and water ness, swelling, oozing or bleed- William Nylander, MD, is catheter. when you get to dialysis before ing, if you feel ill or think you Transplant Physician for VA needles are placed. This will Taking Care of Your AV have had a fever. If you notice Tennessee Valley Healthcare help to prevent infection. Your Fistula the thrill is gone, call the dialy- System at Vanderbilt University dialysis nurses and technicians The same rules apply for an sis clinic as soon as possible. Medical Center. will teach you how to “feel the AV fistula as for a graft. Try The sooner it gets reported, 4 FAMILY FOCUS • Volume 13, Number 1 Y OU AND YOUR FAMILY hen there is a problem, Talking with members of the Whow do you fix it? It Tools For Improving Life health care team will improve depends upon the type of prob- many aspects of your care. By By Dale Ester lem. If your car breaks down, adding communication to your you use tools to take apart Some of the most important tools for toolbox, you will see your rela- broken pieces and then put maintaining control are in your mind. tionships with members of the repaired items back, so the health care team get better, same car now becomes depend- you are prescribed and why you hemodialysis machine operates leading to improved able and reliable again. Some- are taking them. Do not just well enough so you can fully of your treatment sessions times the tools we use are more take medicine because the doc- understand exactly what the together, in a team approach. A mental, like behaviors and atti- tor prescribed it. Learn how readings mean about your per- team is successful because mem- tudes. I have found that some medicines may react with one sonal treatment. The displays bers work together to accom- tools have improved my life, another, what not to eat you see during your plish one common goal. Become and I believe that these tools or drink when treatment are all an important part of this team can make your life better, too. taking them about you. and you will win! and take Watching Let’s create a toolbox of your them on these read- One of the most important own, loaded with useful tools! time as ings and tools is personal control. Each There are many mental tools prescribed. knowing person must control his or her that can be used to help shape what each fluid and dietary intake. This personal attitudes and beliefs, Respect is the reading means means manage what you eat which, in turn, can help you feel second tool to go into may prevent a mishap from and drink as you are advised, more in control of your life. the toolbox. Having respect for occurring. Accept personal to stay as healthy as possible. yourself, as well as for the responsibility and learn about Yes, control is difficult, but Knowledge is the first tool members of your health care what is happening to you while learning how best to use cont- to place in your toolbox. Just as team, and other individuals in you are on dialysis. Become rol will lead you on a path a car mechanic must be armed the unit, will help to create an involved in YOUR treatment. toward a long life filled with with knowledge before he or she environment that is pleasant pleasure and satisfaction. even attempts to begin any and relaxed. Once you understand what repair, so must you educate is happening during dialysis, Now your toolbox is full. yourself about dialysis and how The next tool you will take charge by speaking up Remember to bring it along to live well with kidney disease. want to add to your toolbox is about what is happening to you. with you to the dialysis center This includes learning the good responsibility. It is your Communication is the next every time you go. Do not leave and bad effects of medications responsibility to learn how the tool in your personal toolbox. home without it!

Know Your Rights and Your Responsiblities The National Kidney Foundation is Pleased to Announce…

…the release of the Dialysis Patients’ Bill of Rights and Responsibilities. A complimen- tary copy of this booklet was mailed to dialysis centers in early January. The booklet outlines the rights of dialysis patients on topics such as treatment options, access to information, dietary counseling and a whole lot more. It also addresses the responsibili- ties patients have to their dialysis facility, health care staff and fellow patients.

This booklet serves as a comprehensive, unbiased guide for dialysis patients every- where. We all know that educated and empowered patients are more involved in their care, resulting in better health outcomes. Therefore, we recommend that patients, fam- ily members and members of the health care team read the Dialysis Patients’ Bill of Rights and Responsibilities. To get a copy of the booklet, please contact Crystal Tucker, Material Resources Coordinator at 800-622-9010 or visit the Patient and Family Councils’ Web site: www.nkfkidneypatients.org to download a copy.

FAMILY FOCUS • Volume 13, Number 1 5 Y OUR TURN

dear Dear Editors, editors For years we’ve been told, “We are changing over,” yet no one has received much education about the relationship of kilograms to pounds. For most people, it is a mystery. Since December 2002, my husband has been on dialysis and I have been involved as his caregiver. During this time For the benefit of many patients (especially those on dialysis) and I have made some observations about information sharing care providers, I have developed a conversion chart for kilograms to which are of concern to me and other caregivers with pounds. I hope it helps take the mystery out of these “change whom I have discussed the subject. overs.” Some of the people on dialysis, because of their serious ill- nesses, are not always capable of understanding instruc- Very truly yours, tions. Some suffer from short-term memory loss and do Joseph P. Finnegan not retain information well. For this reason, I feel it is important that all instructions regarding procedures, P.S. My wife, Josephine, (age 78) is a survivor of almost five years appointments, medications, test results and any changes as a dialysis patient. in condition be done in the presence of the caregiver, so To convert kilograms to pounds, multiply by 2.2: that proper action or adherence can be assured. The clin- ic’s involvement with a person on dialysis is about 15 25 kg = 55 pounds 75 kg = 165 pounds hours per week, while ours is considerably longer. Our 50 kg = 110 pounds 100 kg = 220 pounds participation in the health and well being of those we care To convert pounds to kilograms, multiply by 0.45: for is the larger responsibility. I feel that caregivers are, or should be, working as a team to provide the best quality of 74 pounds = 22.74 kg 150 pounds = 68 kg life possible. We cannot do that if we are not “in the loop.” 100 pounds = 45 kg 200 pounds = 90 kg

Dolores Easley, Caregiver Accountability Act (HIPAA) guidelines, the health care staff can not legally discuss a patient’s care with anyone, without the Editor’s Note: Caregivers do indeed play a very significant patient’s written permission. role. However, due to Health Insurance Portability and

s a dialysis patient for 17 taped around your arm and A years, there have been Tips I Picked Up Along hand to prevent movement many changes in my mental and while on dialysis. physical health. Prayer has been the Way ◗ Keep a log while on dialysis. I a tremendous help to me. By Richard Epes McMurran record my sodium level and the amount of fluid to be taken My mother and three of her schedule for your treatments. I infection that could not be iden- off while on the machine, brothers had polycystic kidney had a tendency to rush my treat- tified by my nephrologist. It was based on my weight when I disease, so our family physician ments instead of sticking to my also in 1990 that my long-time begin to dialyze. In addition, suggested that her six children schedule. friend gave me this valuable I record my blood pressure, have an intravenous advice: “Be patient, be flexible I became very conscious of the pulse, venous and arterial study test. These tests revealed and think positively.” importance of sticking to a CAPD pressures and dialysis that three of us, including me, diet, and later to a hemodialysis Since 1990 I have been on machine pump speed. had inherited the disease. diet. The nephrologist and dieti- hemodialysis and my regimen In closing, I am most appre- Through the 1960s and ‘70s, tian monitor my diet through my has changed considerably. ciative of the medical care pro- I watched two of my brothers monthly blood tests. During my years on the dialysis vided by the doctors, nurses, struggle courageously with machine, the nurses and dieti- Exercise has also been dietitians, social workers and numerous operations, dialysis tian have given me the following very important for my well- other staff members at my dialy- and transplants. In 1984, I expe- excellent advice: being. I walk and play tennis sis center. I would also like to rienced kidney failure and began ◗ Keep a log of how much food with my friends, and enjoy thank the ministers, friends and continuous ambulatory peri- and liquid is consumed. both activities. relatives who have been so kind toneal dialysis (CAPD). In 1990, ◗ Have an eight-ounce cup filled to me since 1984. I switched to hemodialysis, As a six-year CAPD patient, I with ice. This is equal to four which continues to the present experienced a number of attacks ounces of fluid. My nephrolo- time. It is my hope that some of of peritonitis that were extreme- gist allows me to have 32 my experiences will help present ly painful. My nephrologist and ounces of fluid per day. During About the Author and future patients. nurse suggested that the cause the past year, my nephrologist Richard E. McMurran lives in of peritonitis was from a germ Newport News, Virginia. As a CAPD patient, I learned lowered the sodium intake for getting into the tubing leading that cleanliness is essential in the machine, and this has This article was edited by Agnes to my . In 1990 I preparing for treatment. It is cured my thirst problem. McMurran Johnson and Jane finally gave up CAPD due to an ◗ also important to have a regular Have a pillow wrapped and Saunders McMurran. 6 FAMILY FOCUS • Volume 13, Number 1 POETRY Flowers of Apprehension Walking Down the Hall Again

By Delores Cribbs By L.B. McCormick N M Sometimes when I dialyze Here I go, walking down the hall again, I know someone has died going to kidney dialysis, once again. N I see the pretty flower bouquets Walking to my treatment once again, But sadly, they are funeral sprays to keep me from passing on, M I look around at all the faces for another day more, N Making sure, the ones I know, are in their places so I can see sunshine, for another day more. Wondering if the one the flowers were brought for For those I got to know, life seems to cheat them so. M Would be someone I had grown to adore? Sometimes, we lose ourselves and take

Was it the lady that lived alone everything in vain, N

Sold her house and went to live in a nursing home? and it seems nothing will ever be the same. Could it be the little old man who sat across from me M

Always smiling, never talking, happy just watching TV? So I keep walking down the hall again, to kidney dialysis, Praying, I asked that it wouldn't be a young mother with babies ‘til the day when we all will win. N Though sometimes life seems so unfair,

Holding my breath while dreading the answer, I asked the nurse sometimes it’s so hard to bear. M Do you know who the flowers are for? But as we look into the eyes of some, She answers, “One of the patients on another shift”

there are those who seem to really care. N Their family brought the flowers as a gift So we continue, to walk these halls once more, Sad but relieved, that I didn't know any of the bereaved in hope to find a cure to help us all. M I let out a sigh and began to breathe ‘Til then, we keep hoping in dreams, in thought, N Thinking to myself that when I die though that day seems it may never be sought. I want my family to find another way to say goodbye So we keep walking down the hall again, to M I used to love getting flowers on special occasions

another day of treatment, once again. Now they are a source of apprehension N Walking towards another sunshine, Reminders that none of us are here to stay

in hope, when we all will be free, That we will all eventually pass away and our lives to cope, with hope, once again. M

So today I do decree...

That if anyone cares to remember me Lloyd Blaine McCormick dialyzes in Zanesville, Ohio. M I hope you'll think I was a sweetie N Laugh, joke and have a party Or simply have a piece of candy When I am on Delores Cribbs lives in Sloan, Iowa, and dialyzes in Sioux City. This Journey, Remember Me, Lord By Gregory L. McCollum

Remember me, Lord, as I go through life’s journey. Have love and mercy on me when Mist I don’t obey, or hear your voice or do your will. By Joseph Yepez Never leave me, Lord, with this sickness that I have. Help me to overcome the aches and pains that some days Vapors of love rise in the air Are more than I can bear. summer waits for spring to care where it left off the fall Comfort me, Lord, when I’m in tears, complimenting each other’s work in all. When I’m mourning the loss of a family member or friend, Winter keeps you at a chill Hoping they had the victory in the end. so you would appreciate the thrill of an early morning hug Lord, as I go through this journey of life, lead and guide me. as coffee spills on your rug Help me travel the righteous path. window kisses and cotton cake And when my journey here is finished, poured with milk chocolate so it won’t look fake I pray that everything I have done was to your pleasing. happy hiccups while I drive Remember me, Lord, while I’m on this journey.

It’s so very good to be Alive! Gregory L. McCollum lives in Burlington, N.C. Joseph Yepez is a dialysis patient care technician in Macomb, Michigan.

FAMILY FOCUS • Volume 13, Number 1 7 T AKING PART IN YOUR CARE

Making Your Clinic A Safer Place Vascular Access ✔ By Bobbie Knotek, RN, BSN If you are on dialysis or will soon be starting, learn about your vascular access. These four checklists will help you prevent ■ Read about the different types of access on pages 8 and 9 of mistakes before they occur. this issue! ■ Ask your facility for brochures or go to these Web sites: www.kidney.org (National Kidney Foundation) or our doctors and dialysis these safety checklists to focus www.aakp.org (American Association of Kidney Patients). clinic staff work hard to on areas where mistakes are Y ■ Read vascular access recommendations at give you safe, high-quality care. most likely to occur. www.kidney.org/professionals/kdoqi/guidelines_upda They try to do things the right tes/doqi_uptoc.html#va way with no mistakes. However, Read these checklists to see ✔ If you have a new fistula, it needs to be treated “special” for because your doctors and staff if you are aware of potential the first three to four weeks. This means using thinner needles are human beings, mistakes can problems. If you want to have and a lower blood flow. If your facility does not have a procedure happen. YOU can help make any checklists with you as a reminder, clip them out and for new fistulas, let your doctor or nurse know their End Stage your dialysis clinic a safer place Renal Disease Network has written procedures available. by working with your dialysis take them with you! ✔ To help prevent problems with your fistula or graft, learn to staff to find and prevent mis- put your own dialysis needles in at the start of dialysis (self-can- takes before they occur. Use nulation). Read about the benefits of self-cannulation at www.nephron.com/judy.html ✔ If you have a U-shaped graft, ask your dialysis nurse which Know Your Medicines side is the artery and which side is the vein. The needle on the artery side of your graft should always be hooked to the tubing ✔ Keep a current list of ALL medicines going to the blood pump. If the tubings get switched, you will not you take, including prescription medi- get a good dialysis treatment. cines, herbs, vitamins, supplements and over-the-counter drugs like cold, cough, ✔ If you have a graft, ask your kidney doctor if your graft could or pain medicines. be made into a fistula if your graft starts to fail. ■ List the medicine (both generic and ✔ Dialysis catheters can cause serious life-threatening infections. brand name), dose, when you take it, why you take it and If you use a dialysis catheter, talk to your kidney doctor about the date you started taking it. getting a fistula, or if a fistula is not an option, a graft. ■ List medicines you get during dialysis. ✔ If you use a catheter, help to prevent infection: ■ List drug allergies. ■ You and your caregiver should wear facemasks whenever ■ Carry these lists with you. Show them to your doctor(s) the catheter is uncapped and open to the air (i.e., starting during appointments, emergency room visits or admissions and stopping dialysis). to the hospital or outpatient surgery. ■ Keep your catheter site covered with a sterile gauze dress- ■ When asked to do so, bring your medicines to the dialysis ing between treatments. unit to be double-checked for accuracy. ■ Read more about preventing catheter infections ✔ Ask these questions when your doctor writes a in the K/DOQI Clinical Practice Guidelines new prescription: for Vascular Access, Guideline #15 at: ■ Does the new prescription replace medicine I have www.kidney.org/professionals/ been taking? kdoqi/guidelines_updates/ ■ How long will I need to take the new medicine? doqiupva_iii.html#15 ■ When should I take the medicine-—“around the clock” or just during the daytime? ■ Should it be taken before, during or after meals? ■ What if I miss a dose? ■ What are possible side effects? How can I avoid or manage side effects? ■ Should I avoid any foods, drugs or activities while taking the medicine(s)? ■ If the medicine is a liquid, can the pharmacist give me a medicine measuring cup or spoon (household spoons do not measure the right dose). ✔ When you pick up new and/or old prescriptions: ■ Read prescription bottle labels, especially the warnings. ■ Make sure medicine is the correct drug and dose. If either the bottle label or the medicine look different than usual, talk to the pharmacist before leaving the counter.

8 FAMILY FOCUS • Volume 13, Number 1 T AKING PART IN YOUR CARE

Before, During and Last, But Not Least After Dialysis ✔ Learn about kidney failure and the treatments for kidney failure. ✔ Ask family members or the dialysis ■ staff to help you walk to and from Go to kidney patient education your dialysis chair if you feel weak or Web sites on the Internet – have vision problems. www.kidney.org (click on patient and family education), www.aakp.org and ✔ Learn your dose. Double-check the type (beef or www..gov/Publications/Pubs/pdf/02119.pdf pork) and the dose with your caregiver every treatment. ■ Read clinical practice guidelines (expert recommenda- ✔ Double-check your dialysis with your caregiver. tions) about dialysis care. The National Kidney Make the amounts of (especially and Foundation (NKF) has guidelines for vascular access, dial- sodium) printed on the package match what has been ordered ysis adequacy, treating , preventing and treating for you. bone disease and control of lipids. NKF guidelines are at ✔ If your facility re-uses dialyzers, ask to double-check two www.kdoqi.org (click on Clinical Practice Guidelines at things every time: top of Web page). Guidelines have also been written by ■ Look to see that the dialyzer connected to your machine other groups for diabetes care, preventing amputations, has a label with your name. wound care and many other medical conditions. To read ■ Make sure the test for dialysis cleaner is negative before these guidelines, go to www.guideline.gov and type the your treatment is started. disease or condition in search box. ✔ ✔ Do NOT cover your needle sites and the needle/bloodline Make a “health history” list and keep it current. ✔ connection with a blanket or clothing. If a needle slips out or Ask your doctors, nurses, dietitians and social workers a bloodline comes loose under a blanket, you could lose a lot about things you do not understand. Where your health is con- of blood very quickly before it is noticed. cerned, no question is too silly, too little or too “stupid.” ✔ Any time you are given medicine through your dialysis ■ Write your questions so you will not forget them. tubing, ask the name of the medicine. If it does not sound ■ Make sure you understand answers to your questions. If familiar, ask your caregiver to double-check your chart. If you do not understand, ask the staff person to use an you normally get medicine during dialysis and the medicine example, draw a picture or explain it your family member. is not given, ask why the medicine was not given. ■ If you are on dialysis, go to your scheduled patient care ✔ Learn about infection control for dialysis units. Read the conference. This is your chance to discuss your dialysis Centers for Disease Control Web site at care with the entire care team. www.cdc.gov/mmwr/preview/mmwrhtml/rr5005a1.htm To learn more about safety, visit www.esrdpa- ✔ Ask dialysis staff to teach you about the dialysis machine’s tientsafety.com/fact_sheet.html for a listing monitors and alarms and your usual readings. Every treat- of available safety fact sheets. ment, check to make sure the alarm limits are set on your machine’s monitors.

To find out about the many services and activities offered in your community or to join the Patient and Family Council at no cost, call the NKF at 1-800-622-9010 or visitJ us atoin www.kidney.org

☞ MEMBERS GET FAMILY FOCUS DELIVERED DIRECTLY TO THEIR HOMES

FAMILY FOCUS • Volume 13, Number 1 9 KEEPING FIT s you make decisions to be those muscles are used. A highly active and involved Protecting Your Hemodialysis Muscles that are never used within your dialysis unit, you will actually shrink in size. In should be giving equal thought Access fact, muscles will lose their to your exercise program. By Pedro Recalde, MS, ACSM ability to complete normal Closing the gap between what Gentle exercise of the access arm may be activities with each month that you want to do and what you passes if they are not used. It is can do is done by setting your beneficial for some on dialysis. true what they say: “Use it, or goals, knowing your body and forearm, simply sit in a com- Although there are risks lose it.” having the discipline to follow fortable chair and rest your involved in exercising Notify your doctor or nurse through with your goals. arm to your side with the (bumping or straining your Sometimes people forget that, if you notice changes in your access side up. Rolling your access arm could damage the access. These changes might although exercise is done to wrist up and down, as if signal- access), keep in mind that become or stay healthy, proper include, but are not limited to: ing someone to come over to there are also risks involved unusual pain, numbness, bleed- measures must be taken to stay you, can stimulate your fore- in not exercising. healthy enough to exercise. It is ing, redness or abnormal bulging arm muscles. With time, if you in the areas of the access. discouraging to begin an exer- want to add a bit of resistance, When you protect your cise program, become success- hold a can of soup in the palm access to the point where you Remember, the more you ful, then be forced to take an of your hand while exercising avoid using that arm in all prepare yourself now, the unwanted break due to unnec- to help increase your strength. activities, you might be harm- stronger you will feel, making essary injuries. So before you Exercising your upper arm ing yourself more than helping. your exercise sessions more begin your program, review (bicep) can be done in a similar The strength of your muscles successful and a positive these tips to help keep you fit fashion. Hold a can of soup in has to do with the amount experience. and exercising towards better the palm of your hand and health. raise it up and down, bending at the elbow.

Consider these additional helpful hints for protecting your access.

■ Although the dial- ysis clinic is the perfect place to begin an exercise program, exercises involving Wash your hands often to your access site must not be reduce the chance of infections. done while dialyzing. In order to keep a smooth and rapid flow of blood, your access should be Rolling your wrist up and down, as if kept as still as possible. signaling someone to come over to you, can Family Focus VOICES stimulate your forearm muscles. In time, you may add some light weight, like a ball or can. WE LOVE TO HEAR FROM OUR READERS, and so every ■ While doing any issue of Family Focus now includes a special question. kind of exercise, you As you well know, your vas- should not wear any tight Read the question below and let us know what you think. cular access is your lifeline for bands or jewelry around your You will also find this question posted online at hemodialysis. It is very impor- access. There is a lot of move- www.familyfocusvoices.org tant to maintain the health of ment involved when exercising, your access. There is some so special care should be taken You may visit the Web site and share your thoughts there, or debate among health care pro- Family Focus to make sure that your access send your response in writing to Voices, 30 fessionals as to whether or not rd site is not being hit, rubbed or East 33 Street, New York, NY 10016. exercise training should involve cut during your routine. your body part containing the What has made your life access. After consulting with your personal health care ■ Remember to outside of the dialysis unit provider, you might consider wash your hands often, better by helping you cope doing some exercises that especially when handling with the challenges you may involve strengthening the mus- weights in public places, to face with such things as cles around your access. These keep yourself and your access exercises can be done without clean. personal relationships, meal the use of heavy weights. For planning or employment? example, if exercising your

10 FAMILY FOCUS • Volume 13, Number 1 TRANSPLANTA TION ransplantation is just one ✓ Have I called to let them Ttreatment for chronic kid- : know about any changes in ney disease. Your health care my health, hospital stays, or team can help you decide if it is Am I Ready? new medications? By Linda Harte, RN, BSN, MA, CNN, CCT the right one for you. ✓ Have I kept my appoint- ments for re-evaluation Not everyone is a candidate Consider these important questions if you are every 6 to 12 months? a for a kidney transplant because interested in a kidney transplant. transplant, or they discover of his or her medical condition. The transplant team will that you never went to the But if you are interested in one, arrange for you to talk with a dentist to get that cavity you should ask questions and social worker or psychologist to filled. Be sure to stay in find out more about this treat- discuss how you are coping with touch with the transplant ment. If your physician recom- your disease and treatments, coordinator about any mends that you consider trans- how well you take care of your- changes in your life. plantation, he or she will refer self and to be sure you are you to a transplant center for It is very upsetting to both “mentally” healthy enough to evaluation. you and the transplant team go through transplant surgery when a call has been made to and care afterwards. You should Before you meet with the inform you that a kidney is ask yourself these questions to transplant team, there are a few available for you and they are prepare for a possible trans- basic medical exams, x-rays and not able to find you, or you do plant: tests you should have if you not have insurance approval. ✓ Do I take my medications have not already had them in A successful transplant may regularly as prescribed? greatly improve the quality of the past year. Getting these The answers to these ✓ Do I dialyze regularly your life. Be sure you are ready done, or at least scheduled, will questions are just as important and attend all medical by being an active part of your help you get on the transplant as the physical part of your appointments? health care team! list sooner. evaluation. ✓ Will I be able to take care of The things you myself when I go home from After you are on should have done include: the hospital? the transplant list and waiting for that Physical exam ✓ Do I have someone to take me to my appointments call, you need to be JUMP Mammogram (women) after the transplant until I ready. You might Electrocardiogram (EKG) can drive myself? want to periodically ask yourself these ✓ Do I have a telephone so I Dental exam questions: can call if I have questions Chest x-ray ✓ Does the trans- START or so the transplant nurse plant center have PAP test (women) can notify me of all test HOPE. my current results and possible changes Stool sample address and in my medication after the There are lots of reasons to Prostate Specific Antigen phone number? transplant? (PSA) test (men) ✓ Do they have donate a car to the ✓ Does my health insurance alternative num- National Kidney Foundation. have certain transplant bers or people to All of these are part of health programs I must use? call A possible tax deduction* is screening that everyone needs ✓ Have I talked with to find me ( only one. regularly. Ask your doctor or someone at my insurance phone, pager, nurse for copies of the results to company about my trans- work number) take with you to your transplant Call plant benefits? when a kidney is appointments. The transplant ✓ available? team will order additional test- Does my health insurance 1-800-488-CARS ing depending on your specific cover the anti-rejection and ✓ Do I let them health needs. anti-viral medications? know when I am Make Your Car a Kidney Car. ✓ going to be out of Will I be able to pay Cars That Save Lives. If there is someone who wish- the co-pay? town or unavail- able? es to donate a kidney to you, ✓ Will I be able to afford ✓ this potential donor will have to the cost of anti-rejection Has my insurance be screened and tested to make medications, or have coverage changed sure their donation will be suit- insurance coverage, when and, if so, do they able for you. have my new Medicare coverage expires? *Consult your tax advisor for details. information?

FAMILY FOCUS • Volume 13, Number 1 11 NETWORK CONNECTION e have all had emergencies specifically for the special needs Win our lives—some big, Preparing for Emergencies: of individuals on dialysis. some small—and most of them Preparing for Emergencies: A are scary. People on dialysis and A Basic Tool for Life Guide for People on Dialysis their families may need to take By Roberta Bachelder, MA (government publication num- a few extra steps in preparing A little reading and a little planning can make ber 10150) is a free 35-page for emergencies. booklet with useful information you ready for anything about how to: Any emergency calls for ● prepare an emergency box for facilities. Emergency Meal quick, calm action; as a person ● create a brief accessible Planning gives information to on dialysis you will need to “medical record” about be used in the event of a natural respond to the immediate situa- your specific dialysis needs disaster when dialysis may not tion AND consider your dialysis ● control fluid and diet for a be available, with a grocery list needs at the same time. Emer- few days (if necessary) and three-day meal plan includ- gencies can happen anywhere! If ● disinfect water. ed. To request a copy of these you are on dialysis To get this booklet, you booklets contact the NKF at you have proba- can either download it Know your medica- 1-800-622-9010 or visit bly experienced a from the Medicare Web site, tions, and make sure you have www.kidney.org to download practice drill of www.medicare.gov, or adequate supplies. a copy. Just enter the word “quick evacua- request one from the ESRD ‘emergency’ into the search box tion” in your clinic. These drills The National Kidney Network www.esrdnet- to view other NKF publications help prepare people on dialysis Foundation has a few informa- works.org that serves your about emergencies for those on and staff for emergencies such tional booklets that give impor- state or ask your dialysis clinic. dialysis. as fire, storms or loss of power. tant information about planning It is a good idea to do practice for emergency situations: Preparing for emergencies CMS (Centers for Medicare drills in the dialysis clinic and in Planning for Natural Disasters could save your life, and will and Medicaid Services) has also your home. and Other Emergencies comes help you have a complete “Tool published an important booklet in two versions – one is a guide Box For Life.” Plan today— to help you prepare for emer- for those on dialysis and one is some day you might be glad gencies. The booklet is written you did!

National Kidney Foundation Grant Recipient Studies Use of Nutritional Supplement for People on Hemodialysis

ood nutritional status is on hemodialysis after six the beginning of their patient care. The NKF is Gone of the key factors months of taking the supple- research careers, and Clinical proud to continue its support determining how well you do ment. Albumin is a type of Scientist Awards, which per- of research as another impor- on dialysis. Because of this, protein that plays an impor- mit established investigators tant means of achieving its there is a need for research to tant role in helping to main- to devote more time to their vision of Making Lives Better. find ways of improving nutri- tain your body’s health. research. Grants are also tional status for those on dial- made to nurses, dietitians For more information on ysis. The National Kidney Research is a Top Priority for NKF and social workers to help NKF’s research program visit Foundation’s (NKF) Council More than 20 million them improve the quality of www.kidney.org/ on Renal Nutrition (CRN) is Americans have chronic kid- professionals/ research/ funding a multi-center study ney disease (CKD) and anoth- to evaluate the nutritional er 20 million are at increased effects of taking a supplement risk for developing kidney dis- containing amino acids, the ease. Research is the only way building blocks of protein, for we will find the answers that people on hemodialysis. The can turn these statistics study is being conducted by around. Each year, the NKF Nancy Ginsberg, MS, RD, a provides close to $5 million to renal dietitian at the Renal fund research. The NKF’s Research Institute in New research program has many Nancy Ginsberg is studying the effects of York. Ms. Ginsberg plans to levels including Research a new nutritional supplement. use measures such as serum Fellowships and Young Inves- albumin level to evaluate the tigator Grants, which support nutritional status of people young medical scientists at

12 FAMILY FOCUS • Volume 13, Number 1 P ARENTING hildren who receive hemo- Time Well Spent on Hemodialysis THE BENEFITS OF ADVOCACY dialysis usually spend 12 DURING DIALYSIS TREATMENT C By Beth Bounds, LCSW-C and Arlene C. Gerrson, PhD to16 hours each week at the Parents, as well as the child, dialysis center. Only a few units How can you make the most of are important members of the specialize and cater to the needs your child’s time on dialysis? health care team and can posi- of children, and these units are tively influence their child’s not often available to many chil- alternatives to hemodialysis. health professional who treatment experience. One of dren with chronic kidney dis- This information should be specializes in working with the most important things you ease (CKD). As a result, most given in language that the chronically ill children. can do for yourself and your children dialyze in centers that child will understand, a little THE BENEFITS OF FOCUSING ON child is to be an advocate for mainly serve adults. Because of at a time and with frequent this situation, this article EDUCATION DURING DIALYSIS your child’s needs within the review and opportunity for describes how children’s needs TREATMENT hemodialysis center. questions. Many dialysis units may be met in centers that treat Children of all ages on have books, pamphlets and Learning about hemodialysis, both adults and children. hemodialysis can take advan- videotapes with drawings and nutrition and medication can tage of their time on dialysis by THE BENEFITS OF RECREATIONAL charts that can be used and help parents be good advocates working on educational and ACTIVITIES DURING DIALYSIS there may also be educational for their child. Hemodialysis is school assignments. For many TREATMENT materials that are designed a major commitment and will children, missed school is an Children often complain of specifically for children. be a big part of your child’s life. unfortunate result of chronic boredom while on dialysis and Encouraging a child-friendly THE BENEFITS OF OPTIMISM hemodialysis. It is important pass the time by sleeping. For atmosphere in the dialysis unit DURING DIALYSIS TREATMENT that parents and health care many children, a daytime nap will help make runs more Keeping a positive attitude team members advocate for the can disrupt their nighttime pleasant. Consider talking to in the face of continued and child to get educational and sleep and consequently their the nurse manager, social frequent hemodialysis is some- vocational services suitable to ability to function optimally worker or doctor about creative times a very difficult thing to their level of need. In fact, it is during the day. A backpack or ways to better meet the needs do. It is important for children required under Federal Public activity bag with some of your of your child in the unit. This and parents to get emotional Law that all children receive child’s favorite card or board can range from asking the support, especially a fair and games, arts and crafts supplies, center for videos or pamphlets if emotions or appropriate books and books on tape, hand- Positive attitudes by parents about kidney disease that are attitudes get in and staff members can help keep education in held video games and approved targeted to children, to helping children smiling keeping with snacks (if the unit allows eat- the child be more comfortable their medical ing during dialysis) may be in the clinic, through decora- needs. Talk to the very useful in preventing the tions, activities or music. Your unit manager and “boredom” nap. Change the help can make all the differ- counselors at your contents of the activity bag ence in creating a pleasant child’s school to find every few weeks and let your dialysis experience for your out if tutoring or child help decide what to pack. child. academic instruc- THE BENEFITS OF EDUCATION tion can be set up at ABOUT CKD AND DIALYSIS the dialysis unit by About the Authors DURING DIALYSIS TREATMENT the way of full treatment. the school system. If formal Arlene Gerson, PhD, is a pedi- Most people have heard the Emotional support helps in instruction is not available in atric behavioral psychologist at expression, “knowledge is keeping a hopeful attitude the dialysis unit, parents and the Johns Hopkins Hospital in power.” This is especially true about the future. chedule an unit staff should create an Baltimore, Maryland, and an in the management of kidney appointment with your unit’s atmosphere to encourage Assistant Professor of Pediatrics disease and there is a lot to social worker to discuss your studying and homework at the in the Division of Pediatric know. Children need to under- child’s adjustment to dialysis. clinic. It is important to praise Nephrology at the Johns stand how and why hemodialy- Try to get connected with other your child for academic and Hopkins University School of sis works, the importance of patients and families in the vocational interests. Older Medicine. taking their medicine, how unit in order to increase your teens can use dialysis run time they can stay healthy in social support network. Your to study for standardized tests Beth Bounds, LCSW-C, is a between treatments, the impor- child might also benefit from (GED, SAT, GRE), to search clinical social worker at Johns tance of protecting their graft talking with other children who the Internet (if the Internet is Hopkins Hospital. She has and keeping the graft area have CKD. If you cannot find available) for educational and been a licensed social worker clean, the importance of eating the support you need in your vocational opportunities and/or for 15 years and with the the right foods and consuming center, ask a health care team to work on college coursework. Pediatric Nephrology Division the correct amount of fluid and member for a referral to a for the past four years.

FAMILY FOCUS • Volume 13, Number 1 13 GOVERNMENT CONNECTION management for those with Disease Management: CKD who are not yet on dialysis. Dolph Chianchiano, New Programs Being Tested JD, MPH There are some similarities By Dolph Chianchiano, JD, MPH between the CMS ESRD Dis- The government is helping clinics explore ease Management Demonstra- isease management pro- new tools to help those on dialysis manage tion Project and an earlier pilot program, the ESRD Dgrams have become a their kidney disease. popular way of coordinating and Managed Care Demonstration, improving the care of people the patient and health care pro- may choose to pay for services conducted by the Health Care with chronic illnesses. The goal fessionals. that are not currently reim- Financing Administration from bursed by Medicare, like trans- 1996 through 2000. Those who is to stop complications and On June 4, 2003, the U. S. portation (to and from dialysis participated in the earlier lower rates of hospitalization or Centers for Medicare and treatments), mammography demonstration reported higher emergency room visits. Disease Medicaid Services (CMS) and nutritional supplementa- satisfaction with health plan management programs support announced plans for a program tion. On the other hand, benefits than a representative the patient’s role as a vital of pilot projects to test if dis- patients participating in the sample of people who were member of the health care ease management helps to demonstration may be allowed covered by traditional Medicare team. Typically, the disease increase quality of care for to see only certain specified ar-rangements. Also, when management approach uses a people who are receiving in- health care providers and may contrasted with people in the system of tools that makes it center dialysis. (This is known have to pay additional premi- comparison groups, demonstra- easier for patients and health as the CMS ESRD Disease ums or cover different levels of tion participants experienced care professionals to understand Management Demonstration and follow treatment plans. some improvement in quality Common examples of disease of life, particularly with regard Common examples of disease management tools are educational to mental well being. The new management tools are educa- demonstration may similarly tional materials and programs, materials and programs, alerts, find ways to improve the alerts, reminders and feedback reminders and feedback activities. health and well being of those activities. For instance, a dis- on dialysis. Project.) Some health care ease management system deductibles and co-payments organizations applied to partici- For more information about would alert a kidney doctor than Medicare would normally pate before the fall of 2003, the Medicare ESRD Disease when another doctor has pre- require. This is an important and those selected will pilot Management Project, patients scribed a drug that might affect consideration since Medicare test their programs over and family members may con- the person’s dialysis treatment. beneficiaries who have Medigap the next four years. If these tact Brady A. Augustine at the Reminders might include insurance should probably programs prove to be useful, Centers for Medicare and notices to individuals that they plan to pay premiums to keep it is possible they will become Medicaid Services. Mr. need to refill a prescription or those policies in force during more widespread. Augustine is the Medicare to doctors that a prescription the demonstration project. Program Executive for ESRD. People on in-center hemo- has expired and ought to be Otherwise the same coverage His e-mail address is dialysis may learn that their renewed. These reminders might not be available at the [email protected] can be mailed, sent over the clinic is testing a disease man- end of the demonstration. telephone (with a live or pre- agement program, and if so, Medicare beneficiaries with recorded message) or delivered they may be asked if they by e-mail. would like to participate. While (CKD), but who have disease management can be More unusual may not reached the stage used with any kind of health also be used in the disease man- where they need dial- insurance, the CMS ESRD agement process. For example, ysis treatments or a Disease Management in order to assist people with kidney transplant, Demonstration Project will also kidney disease in reaching may not enroll in this test the effectiveness of paying dietary goals, one disease man- disease management for health care services in new agement program delivered food program. The Centers ways. As a result, people receiv- scales for use in all participants’ for Medicare and ing dialysis who choose to kitchens. Some disease manage- Medicare Services enroll could find their options ment programs assign care may develop a new expanded in some ways and managers to coordinate services. pilot project in the Some disease management restricted in others. For exam- These care managers serve as a future to evaluate programs may explore ways to use the ple, participating organizations phone or e-mail to send reminder communications link between the impact of disease messages to people on dialysis. 14 FAMILY FOCUS • Volume 13, Number 1 LIVING WELL t is unlikely that you would Thinking of your strengths, I choose to have chronic kid- Making the Shoe Fit: skills and resources instead of ney disease (CKD) and that you weaknesses has come to be would welcome the need for Seeing the Potential Instead known as the “Strengths dialysis. However, having CKD of the Problem Perspective”2. This idea sug- and living with dialysis may be By Mary Beth Callahan, ACSW/LMSW-ACP gests that every individual, just where you are today. Resilience is needed to live your group or family has strengths. Finding the strength within Illness and struggle, though yourself to live life to the fullest life to the fullest. difficult, may be sources of in spite of CKD may not come hard. A different treatment usually makes others want challenge and opportunity. easy, but it is very possible. like peritoneal dialysis or to be around you and makes Focusing on your strengths and Over the last 20 years, I have transplant may be right for you feel better about how you have handled other seen strength beyond belief in someone else, but may not yourself. difficult times in your life may people who were at difficult give you new hope for the be what you want. Keeping Morality: Being in agree- times in their life This strength future. It may not be the same true to yourself usually feels ment with standards of can be defined as “resilience.” best. vision you had as a child, young adult, parent or senior before Thinking of your strengths, you were diagnosed with CKD, skills and resources instead but focusing on your strengths may open doors you could not of weaknesses has come to be known have imagined earlier. as the “Strengths Perspective”

Relationships: Making connections to other INDEPENDENCE people. Connecting with SENSE OF other people on dialysis HUMOR and their families and dialysis staff often gives ☺ people something to look HONEST forward to at the dialysis INSIGHT The basic characteristics of center. Having the support “resilience”1 should be part of and friendship of others your “dialysis toolbox.” I bet CREATIVITY can make each step of life you have some, if not all, of SELF easier to manage.

these characteristics. You can ? probably think of other helpful Initiative: Taking charge personality traits that you see of problems. Sometimes it

others using to adjust to dialy- may feel like many things MORALITY

sis, or that you recognize your- about CKD are out of your RELA self using daily to make the control. However, the more TIONSHIPS

best of your time on dialysis. involved you are in your Some of these include: care, the more control you INITIATIVE will likely feel. Honest Insight: Asking Creativity: Using your tough questions and giving imagination. Problem solv- right or good conduct. The honest answers. At times it ing takes creativity. CKD 1. “Vocabulary of Strengths: Dialysis Patients’ Bill of may seem a bit overwhelm- and its treatment offer The Seven Resiliences”. Rights and Responsibilities ing to ask the doctor a ques- opportunities to look at www.Project Resilience.com. may help you to think about tion or share a fear or con- problems in different ways your life in the dialysis cen- cern with a staff member, and draw on your strengths 2. Saleebey, Dennis. The ter and how you can use however, communication to adjust to the changes that Strengths Perspective in Social your strengths and life expe- can help you to be an active come with CKD. Work Practice. Boston: Allyn & riences to make dialysis fit part of your care. Bacon, 2002. Sense of Humor: Being able into your lifestyle. Independence: Being self- to laugh and find the bright reliant. Being different from side whenever possible. the group sometimes is Having a positive attitude

FAMILY FOCUS • Volume 13, Number 1 15 MILESTONES ach year the Patient Like Richard, there are many and Family Council The NKF-PFC 4th Annual more individuals who feel that Ereceives numerous out- by improving the lives of those standing submissions for the Wayne Nix Memorial Award with kidney disease they are annual Wayne Nix Memorial Are you 2004’s Winner? meeting their life’s mission. If Award, and this year will be no you know that special individual who makes the lives of individu- exception. The award seeks to als with kidney disease just a recognize an individual with little brighter, we encourage you chronic kidney disease who, to submit an application on through life experience and their behalf. For a complete list activity, has proven that he or of criteria and to submit a nomi- she is committed to improving nation, please visit the Patient the lives of all those affected by and Family Council’s Web site kidney disease. www.nkfkidneypatients.org and click on Wayne Nix Memorial Last year’s winner of the Award. If you would like an 2003 NKF-PFC Wayne Nix application mailed to you please Memorial Award was Richard contact the National Kidney Salick. Richard was diagnosed Richard Salick receives the 2003 Wayne Nix Award from Linda McCann. Foundation at 800-622-9010. with kidney disease at the age as the Director of Community annual surfing festival that has The deadline for applications is of 23 while pursuing his career Relations for the NKF of raised more that $4 million for Friday, July 30, 2004. as a professional surfer. Today, Florida, Inc. the NKF of Florida. Despite his 30 years and three kidney personal health problems, transplants later, he refuses to While in his position as Richard continues to maintain let this disease slow him down. In the next issue of Director, Richard created an a positive attitude. He knows Richard has worked actively Family Focus... educational program designed that his main goal is to cont- with the National Kidney TOOLBOX FOR LIFE, PART II: to introduce seventh and eighth inue his tireless work to Foundation (NKF) for the past Dialyze to Live, Don’t Live graders in Florida to kidney dis- improve the lives of those 18 years and currently serves to Dialyze ease, as well as developed an with kidney disease. WHAT’S YOUR AQ?™ TAKE THE ANEMIA QUOTIENT QUIZ visit www.anemia.com Call today to join the Anemia Lifeline 1.888.722.4407 ext.980

“There’s hope for people suffering from anemia. Take this self-quiz and talk to your doctor.” ~Danny Glover Actor & National Spokesperson

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FAMILY FOCUS • Volume 13, Number 1