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DIET LIVING WITH DIALYSIS WHAT CAN I DO WHILE I AM HAVING TREATMENT? Eating properly is important when you are on dialysis. To feel well, you need to eat the right food. Your dietitian will help you plan a diet for your special needs. You can do some activities while having dialysis. For example, you may wish to: Utilize our entertainment system, T.V., phone, Internet ($2.00 per visit) Read Knit Do a crossword Have visitors Play cards Keep in mind that you cannot stand up during your treatments. Your nurse can talk to you about how active you can be during your dialysis. SNACKS RVH will provide coffee, tea, juice, or ice for the patients. Occasionally, cookies will be supplied. VISITORS Visitors are welcome in the Renal Clinic. We ask visitors to leave the unit: When a patient is going on or coming off dialysis If there is an emergency in the unit WHY DO I NEED TO BE ON A SPECIAL DIET? Because your kidneys are not able to get rid of enough waste products and fluids, your blood and your body now have special needs. You will need to limit fluids and change your intake of certain foods in your diet. How well you feel will depend on: 1. Eating the right kind and amounts of food from your diet 2. Having the hemodialysis treatments your doctor orders for you 3. Taking the medications your doctor orders for you. Your diet is very important to your care. It is important that you have the right amount of nutrients, fluids, vitamins, and minerals each day. Some of the nutrients you may have to modify are potassium, phosphorus, calcium, protein and sodium. Your dietitian will help you plan your meals to make sure you get the proper balance. FLUID On dialysis, you may require a fluid restriction. The goal of fluid restriction is to help you feel comfortable before, during, and after your dialysis sessions. Even though your dialysis gets rid of excess fluid and waste in the body, it is not as effective as healthy kidneys. Going over your recommended fluid allowance can lead to too much fluid building up in your body between treatments. This build up causes swelling and increases your blood pressure, which makes your heart work harder. Too much fluid can build up in the lungs, making it difficult for you to breathe. Some people experience muscle cramping during dialysis when they gain too much fluid weight. Taking off too much fluid can also cause a drop in blood pressure, which can leave you feeling nauseated, dizzy, and weak after your treatment. If you require a fluid restriction, here are a few hints: -11- Use crushed ice mixed with very small amounts of fluid Use smaller cups and glasses Suck on hard candies or chew gum Rinse your mouth and brush teeth often Eat frozen grapes and other fruits that are low in potassium Eat less salt so you do not get thirsty Count frozen foods that melt when they are at room temperature as part of your fluid intake -12- SHOULD I WEAR A MEDICAL ALERT BRACELET? It is a good idea to wear a Medic Alert bracelet. This lets others know that you are on dialysis. You can get an application from the Renal Clinic, Kidney Foundation or your family doctor. When you fill out the application, make sure you include: Your medical conditions such as renal patient or diabetic The medicine you take Your allergies Your fistula/graft/catheter location WHAT TESTS CAN I EXPECT TO HAVE? We take blood from your fistula/graft or dialysis catheter once a month. This is for your routine blood tests. Your doctor and nurse will talk to you about these test results. We also recommend that you have a chest x-ray and electrocardiogram (ECG) once a year. The chest X-ray checks for changes in your heart, lungs and bones. The ECG tells us if you are having any heart changes. These are not painful tests. IS IT O.K. TO TRAVEL? You can travel if dialysis is available at that location. If you plan to travel, speak to the Social Worker as early as possible. Arrangements are made well in advance. HEPATITIS B Hepatitis B is a virus that infects the liver. The Hepatitis B vaccine is given in 3 shots. When your body gets the vaccine, it makes antibodies. These antibodies attack the Hepatitis B virus if it gets in your body. Some people already have the antibodies and do not need the vaccine. Sometimes, the vaccine does not work. If this happens to you, we test your blood once a year to make sure you do not have Hepatitis B. -13- -10- LOW BLOOD PRESSURE You may get low blood pressure near the end of your treatment. This makes you feel dizzy, tired and cold or as if people are talking to you through a tunnel. If you have these “funny” feelings tell your nurse. Your nurse may: May give you saline Stop or slow down fluid removal Tilt your head back so that more blood gets to your head Give you a drink or something salty to eat CHANGE IN APPETITE When you first start dialysis, you may not feel like eating very much. As the dialysis removes the toxins from your body, your appetite should return. Please let the nurses know if you are having difficulty eating. CHANGES IN YOUR ENERGY LEVEL When you first start dialysis, your energy level is low. Having less hemoglobin in your blood or high toxin levels in your body makes you feel this way. As the dialysis removes the toxins, your energy returns. Many people feel tired right after dialysis but feel better about 2 hours later. Many people return to their former activities after they start dialysis. ANSWERS TO COMMON QUESTIONS Central venous catheters are made with a double-lumen design with one port designated as arterial flow (red) and the other as venous flow (blue). Keep catheter dressing dry Do not allow anyone other than the hemodialysis nurse and/or nephrologists to access your catheter Signs and symptoms of infection and how and to whom it should be reported: Increased temperature Shaking, chills Discharge noted at exit site Redness at exit site Pain at exit site Report these signs and symptoms to the nurse or to the nephrologists What to do in case of accidental removal or cutting of catheter: Clamp the remaining tail of the catheter Direct pressure at insertion site with occlusive dressing Seek medical attention Call the dialysis clinic for further instructions HOW DO I TAKE CARE OF MY FISTULA/GRAFT? HOW CAN I GAIN SO MUCH WEIGHT IF I DON’T DRINK ANYTHING? IMPORTANT!!!! Your fistula/graft feels as if it is buzzing. It also makes a swishing sound called a bruit. These are normal. If they stop, call the renal unit immediately. It may mean that your fistula/graft is clotted. We must act quickly to save your fistula/graft. Without knowing it, you may eat too much salt. This makes your body retain fluid. Also, you may eat foods that have hidden water. Such foods include: jello, soup, gravy and frozen foods that are liquid at room temperature, like ice cream or sherbet. Do not let anyone use your fistula/graft except the dialysis nurses and doctors. WHY IS IT SO HARD TO REMOVE 4-5KG IN ONE DIALYSIS TREATMENT? It took you 3 days to drink that much fluid. Removing it in a single treatment puts too much strain on your heart and the rest of your body. Repeating this frequently can lead to permanent heart damage. -15- Do not let anyone: Take blood from your fistula/graft arm Start an intravenous (IV) in your fistula/graft arm Take blood pressure on your fistula/graft arm Do not carry bags or purses over your fistula/graft arm. Do not sleep on your fistula/graft arm. Do not wear clothes with tight sleeves -8- If you think your fistula/graft is infected, tell your nurse at your next dialysis. Your fistula/graft may be infected if: Looks red Feels tender Swells Hurts Has fluid running from it Protect your fistula/graft when lifting, playing sports, or working. HOW DO I DEAL WITH COMMON PROBLEMS? You can control or stop these problems if you catch them early. Make sure you tell your nurse or doctor if you notice changes. CONSTIPATION This may be caused by some of your medicine or because you need to drink less fluid. Talk to your doctor about laxatives that are safe for you to take. Some laxatives you can take are: Colace, Senokot, Lactulose and glycerine suppositories. Please do not use Metamucil without speaking to your Doctor…..it requires you to drink extra fluid. Also speak to your Dietitian about incorporating more fiber into your individual “eating plan”. HOW TO CARE FOR YOUR FISTULA AFTER TREATMENTS We put a dressing over your fistula/graft after your treatment. Remove the dressing: In the evening of your treatment if your treatment was in the morning The morning after dialysis if your dialysis was in the afternoon or evening The dressing or Band-Aid may stick to your fistula/graft, if so try soaking the dressing with warm water. To avoid infection, remove the dressing and keep your fistula/graft clean. If a needle site bleeds after you leave the unit, put pressure on the site until the bleeding stops. It is a good idea to carry a few sterile gauze squares with you. Use the gauze squares to cover the site before you apply pressure. If the bleeding does not stop, call the renal unit or go to the nearest emergency department. TOO MUCH FLUID IN YOUR BODY If you have too much fluid in your body, you may get: Swollen or puffy legs, ankles, eyes or hands High blood pressure Shortness of breath This can happen if you drink too much fluid or eat too much salt. CRAMPS You may get muscle cramps in your feet, lower legs and hands during or after your treatments. This happens after you lose fluid during dialysis, or when you reach your dry weight. Dry weight is the weight at which you have no extra fluid in your body. To reduce the cramps, your nurse may put saline in your dialysis line. Saline is a sterile mix of salt and water. If you get cramps during or after your treatment, a light massage or a hot pack on the cramp may help. After treatment, try light exercise such as walking. Remember that you cannot stand up during your treatment. ITCHY SKIN Your skin can get itchy if there is too much phosphate in your blood. Many foods contain phosphate. The dietitian teaches you what foods have a lot of phosphate in them. To lower your phosphate, you may need to take medicine such as calcium carbonate. Oscal, Tums or Renagel, these bind with phosphate so that less phosphate is absorbed. Dry skin also causes itchiness. Try using mild soap, bath oil, and skin cream to stop the itching. -14- -9- CENTRAL VENOUS CATHETER This method is normally only used when the veins in the arms are too small to provide enough blood for hemodialysis, or when access to the bloodstream is needed quickly. It is used temporarily until a permanent access is ready. A central venous catheter is a soft tube which is inserted into a large vein. The most common used veins are the jugular vein at the side of the neck and the subclavian vein just underneath the collarbone. The advantage of a central venous catheter is that it can be used immediately. HOW DO I TAKE CARE OF MY CATHETER? Central line catheters are not the optimum access for dialyzing due to the increased risk of infection. With the placement of the catheter tip in the right atrium of the heart the risk of infection is high, therefore showering is NOT recommended. But if showering is necessary, please place a covering over the catheter dressing to prevent it from getting wet and contaminating it. This can consist of saran wrap (plastic wrap) taped over the dressing. Make sure to tape all sides and the full length of the saran wrap to prevent leakage. I AM GETTING ARANESP, WHY IS MY HEMOGLOBIN STILL LOW? If you have an infection, low iron or lose too much blood, your hemoglobin gets low even if you take Aranesp. You can lose blood during a hemodialysis treatment due to your system being clotted, fistula site bleeding post treatment, or monthly bloodwork being taken. WHY IS MY POTASSIUM HIGH? I DON’T EAT FOOD WITH MUCH POTASSIUM IN IT. You may have eaten many things with small amounts of potassium in them. Also, you may not know about some foods that contain potassium. It all adds up. Check with your dietitian. WHY DO MY BONES HURT? When your phosphorus, calcium, and parathyroid levels are out of normal range, they can lead to problems with your bones and joints. These levels are monitored closely. Your doctor, dietitian, or nurse can talk to you about how to control these levels. WHAT DO I NEED TO KNOW ABOUT TAKING MEDICATIONS? Your doctor prescribes drugs for you to take while you are on dialysis. You need to know : The reasons for taking the drugs How and when to take them Their side effects Which ones you cannot take right before dialysis Which ones you cannot take right after dialysis If you take any other drugs, tell your nurse or nephrologists about all other drugs that you take. This includes: Drugs that other doctors prescribe for you Drugs that you buy without a prescription such as allergy, pain, and cold pills. These are called over the counter drugs. Talk to your nephrologists before you take any over the counter drugs. Your pharmacist is more than welcome to call the clinic to speak with the nephrologists or nurse about your medications. -16- -7- Your Nephrologist may order any of the following drugs for you. ACCESS CHOICE ERYTHROPOIETIN/ARANESP Aranesp helps your bones make red blood cells that increase your hemoglobin. Your nurse gives you Aranesp through your dialysis line at the end of each treatment. It takes 4 to 6 weeks to feel the effects of Aranesp. You can be attached to the machine in several different ways. The most commonly used methods are: Internal fistula Internal graft Central venous catheter PHOSPHATE BINDERS FISTULA These include calcium carbonate, and drugs, such as Tums, Renagel or Oscal. These drugs bind with the phosphate in your food to lower the amount of phosphate in your body, and must be taken with food to work properly. Keeping your phosphate levels under control helps your bones stay strong and healthy. Take your phosphate binders with your meals or snack. Talk to your dietitian about controlling you phosphorus levels. The fistula is the best method for providing access to the bloodstream. To make a fistula, an artery and a vein in your arm are surgically connected together. Fistulas can be used about 12 weeks after surgery. You will be encouraged to do some special exercise to help the fistula develop or mature. One exercise you can do after your stitches are out is squeeze a tennis ball or sponge many times daily. IRON ADVANTAGES Iron is needed to make red blood cells. Iron pills may upset your stomach and turn your stools black. Take iron when your stomach is empty before you go to bed. You also may get iron through the dialysis line during your treatments. Do not take iron at the same time that you take your phosphate binder. The phosphate binder binds with iron and makes the iron inactive. MULTIPLE VITAMINS These replace the vitamins that you are unable to get from your diet. They also replace vitamins that you lose during dialysis. Take vitamins after your treatments. Talk to your pharmacist or dietitian about taking the right vitamin. BLOOD PRESSURE PILLS These are different kinds of blood pressure pills. Do not take blood pressure pills before your treatment unless your doctor tells you to take them. Side effects of blood pressure pills include: dizziness, swelling, coughing, and slow heart beat. Tell your nurse if you have any of these symptoms. -17- Reduced incidence of clotting Reduced incidence of infection Requires less daily care from patient Avoids potential for allergic responses to synthetic materials Has a great longevity (70% over 3 years) A fistula is considered to be the ideal choice of nephrologists and vascular surgeons. GRAFT A graft is another common way of providing access to your bloodstream. A short piece of special tubing is placed under the skin to connect an artery and a vein. Grafts can normally be used within 2 to 4 week after surgery. ADVANTAGES Can be used sooner than a fistula Provides large surface for cannulation Blood flow not dependent on vein maturation -6- SOCIAL WORKER PAIN DRUGS You or your family may have problems getting used to your dialysis. It may help to talk to the social worker. For example, you may want help with financial issues, drug costs, work, or getting to the renal unit. The social worker may be able to arrange community resources to help you. Tell your nurse if you wish to talk to the social worker. If you need something for pain, use acetaminophen. A trade name for this drug is Tylenol. Do not take Aspirin (ASA) unless your doctor tells you to take it. PHARMACIST ANTIBIOTICS You need to take antibiotics before and after you have dental work. Dental work includes having your teeth cleaned. The antibiotic prevents infection in your blood. Tell your nurse or doctor when you are going to the dentist. The pharmacist helps you understand the medication you are on. They make a list of when you should take your medications. Example: Iron pills should not be taken with Calcium pills. They will inform you of the side effects of these medications and when and how to take your medications. DIETITIAN The dietitian will explain the importance of controlling your eating habits and food choices and will work with you to develop an individualized eating plan that meets your special needs. The renal dietitian’s main goal is to help people make wise food choices and learn how to include their favourite foods in their “eating plan” when possible. To construct this plan, the dietitian will ask you questions about your eating habits and food choices. Then other information is considered, like blood test results, medical history, and current health concerns. Although your “eating plan” may be easy to understand, it’s not always easy to follow. It is important that you understand why your dietitian might encourage certain food and drink limits. Healthy kidneys work 24 hours a day to remove waste products from the blood that build up mainly from the foods we eat. Since your blood is not being constantly cleaned, it is important that you limit the amount and certain types of foods and fluids you consume each day. Your dietitian can recommend healthful food choices that reduce the amount of waste and fluids that build up in your body. By making better food choices, you will have more comfortable dialysis treatments, better long-term health, and an overall ability to have an active and healthier lifestyle. You will feel better and be more able to do the activities you like. The dietitian is based in Barrie and is available in the unit on Wednesday and Thursday. Feel free to call the unit with any questions or concerns. -5-18- CLIENT SERVICES TREATMENT OPTIONS DIALYSIS CLINIC ADVISORY COUNCIL SELF-CARE PURPOSE: Self-care clients learn to set-up their dialysis machines. Some patients put their needles in, but this is not a requirement. With self-care, you have more control over your treatments. If you want to learn more about selfcare, speak to your nurse or nephrologists. To strengthen health links with the community and with RVH by: Sharing information Identifying health needs of consumers Addressing opportunities for improvement on both an inpatient and outpatient basis Promote public awareness of prevention of kidney disease in partnership with other community agencies Promoting awareness at RVH of our clinic and fostering better relationships with appropriate departments MEMBERSHIP Each council will have members representing: YOUR CAREGIVERS DOCTORS A Nephrologist is a doctor with special education in kidney diseases. The doctor plans your medical treatment. If you need to speak to your doctor, or have an urgent issue or need a prescription, please tell your nurse. There are 2 nephrologists available at the unit: Dr. Derek Benjamin Dr. Murali Krishnan based in Barrie based in Barrie Hospital services Community providers – Kidney Foundation, ANAF Consumers – patient Spouse of patient Previous patient (transplanted) Current clinic volunteers Regional Centre (OSMH) – Nurse Educator -19- -4- ABOUT YOUR DIALYSIS TERMS OF REFERENCE You need to come to the clinic 3 -6 times a week for dialysis. Each treatment takes 3 – 5 hours depending on your treatment time. Every effort is made to plan your treatments around your work schedule, but there is a waiting list for preferred shifts. If you have a special event, there is a white board in the client locker room that you can put your request on. Medical appointments related to your dialysis will be arranged by the clinic. We ask that you do not come into the dialysis area before your treatment. When you arrive, please wait in the waiting room. There is a T.V. to watch and magazines to read until you are called in. When your machine is ready, a staff member will call for you. We try to start your treatment on time. Sometimes, we have medical emergencies or equipment problems that cause delays. We appreciate your patience when these delays do happen. Council members will: Promote collaboration to ensure the establishment and maintenance of strong links between the hospital and community Contribute to the education of all members regarding issues and developments in the hospital and in the community Identify health needs and recommend ways to address these needs – (identify gaps in service) Assist with the evaluation of the effectiveness and quality of service provided – offer opportunities for improvement Councils consistently provide input into RVH’s CQI initiatives and strategic planning processes. It was acknowledged in the past accreditation reports that Community Advisory Councils were a wonderful support and benefit for patient care. Your schedule is: ___________________________________________________________ ___________________________________________________________ ___________________________________________________________ -3- -20- NOTES: ABOUT THE RENAL CLINIC ___________________________________________________________ WHEN IS THE CLINIC OPEN? ___________________________________________________________ Monday to Saturday 0700 am to 11:00 pm ___________________________________________________________ WHERE CAN I PARK? ___________________________________________________________ ___________________________________________________________ Dialysis clients can park on the west side of the white building. There are 4 designated wheelchair parking located in the front of the unit. The clinic is wheelchair accessible. ___________________________________________________________ Parking at the Dialysis unit is free. ___________________________________________________________ ___________________________________________________________ If your dialysis is in the afternoon or in the evening, please do not arrive at the clinic more than 15 minutes before your treatment. This makes access to parking easier. ___________________________________________________________ MAIN CONTACTS AT THE CLINIC ___________________________________________________________ RVH Hemo Dialysis 728-9090 Ext. 24500 ___________________________________________________________ ___________________________________________________________ Gary Foisie Manager, Renal Services (705) 728-9090 Ext. 24550 Derek Benjamin Nephrologist (705) 728-9843 Danielle Pento Administrative Assistant (705) 728-9090 ext 24509 Dr. Murali Krishnan Nephrologist (705) 728-1962 Cathy Goodfellow Resource Nurse (705) 728-9090 ext 24505 -21- -2- CONTENTS About the RVH Dialysis Clinic………………………………………………....2 Hours………………………………………………………………….....2 Parking ……………………………………………………………...…..2 About yourDialysis………………………………………………...……………3 Treatment Options……………………………………..……………………….4 Self Care……………………………………………...…………………4 Your caregivers…………………………………..…………………….4 Social Worker…………………………………………..……………………….5 Pharmacist……………………………………………………………………….5 Dietitian…………………………………………………………………………..5 Access Choice…………………………………………………………………..6 Fistula……………………………………………………………………6 Graft……………………………………………….……………………..6 Central Venous Catheter…………………………………….…………………7 How Do I Take Care of my Fistula/Graft……………………………………..8 What Tests Can I Expect………………………………..……………………10 Living with Dialysis…………………………………………………….………11 Diet ……………………………………………………………………………..12 Fluid …………………………………………………………………………….12 Should I Wear A Medical Alert Bracelet…………………………………….13 Is it O.K. to Travel…………………………………………………………… 13 Hepatitis B…………………………………………………………..…………13 How To Deal With Common Problems…………….…….…………………14 Low Blood Pressure…………………………………………..………………15 Common Questions……………………………………..……………………15 Medications……………………………………………..………………16/17/18 Dialysis Advisory Council……………………..………………………………19 Terms of Reference………………………………………………...…………20 WHAT YOU NEED TO KNOW ABOUT HEMODIALYSIS If at any time you have a concern or complaint, please contact: Patient Representative 728-9090 ext. 44510