How to Care for Your Fistula or Graft You are very wise to get a fistula or graft placed before you start dialysis. Here are some tips on how to take care of your access so it keeps working well. Keep your access clean o Wash your access every time before you start dialysis o Tell your nurse if you notice anything different; for example, if the area of your access is red, feels warm, or if you have had a fever o Be certain your care givers clean your access with a special solution before inserting the needles o Tell your nurse if your hand is cold, numb, blue or painful Keep your access safe o Do not carry anything heavy on your access arm o Avoid pressure on your arm while sleeping o Do not wear tight clothing on your access arm o Do not allow anyone to take your blood pressure or draw blood for labs from your access arm Check your fistula everyday o Your nurse will show you how to check the thrill and bruit o Tell your nurse if: Your hand is cold, numb or painful Your access is warm to touch, red or hard You do not feel the thrill or feel the bruit
Anemia Anemia is a condition that happens when your blood is lacking in health red blood cells. Red blood cells are the main transporter of oxygen to the body s organs. If red blood cells are lacking in hemoglobin (red, iron-rich protein) your body will not get enough oxygen. Anemia has many symptoms, which may include the following: Ongoing or extreme fatigue Rapid or irregular heartbeat Constantly feeling cold Shortness of breath Dizziness or light-headedness Loss of concentration or confusion Pale skin (decreased pinkness of lips, gums, lining of the eyelids, nail beds and palms) The treatment of anemia is based on the type of anemia you have. Your physician may prescribe nutritional supplements, changes in your diet and/or medications. Epoetin alfa is an example used to treat anemia. Erythopoietin is a hormone normally produced by the kidneys. Epoetin alfa is a man-made version of the hormone erythropoietin. Epoetin alfa travels to the bone marrow to signal the bone marrow to produce red blood cells. Epoetin alfa is administered as an injection. Your body needs iron to make red blood cells. Many people who take Epoetin alfa may also need to take extra iron. Iron may be given as a pill or injection. If you are taking iron pills as directed by your doctor, the following tips may be helpful: To avoid constipation, eat high-fiber goods. Fresh fruits and vegetables, which are low in potassium, are good choices. Report an upset stomach to your doctor.
Understanding Fluid Why is limiting your fluid levels so important? The kidneys are no longer able to get rid of extra fluid Those who gain a lot of fluid between treatments heave more discomfort during treatments Large fluid gains cause heart and lung problems What can happen if I gain too much fluid between treatments? Difficulty breathing Swelling in hands, feet and face High blood pressure Headache Cramps Low blood pressure, cramps, nausea and vomiting and dizziness during dialysis Damaged heart Feeling tired or washed out What can I do to limit fluid gain between treatments? Don t eat salty foods Use small cups or glasses and measure fluids Know what counts as a fluid (anything that turns liquid at room temperature) Use hard candy or chewing gum to stop thirst cravings Brush teeth or use mouthwash to stop thirst Use lemon wedges to stimulate saliva Take pills with pudding or applesauce instead of water Ask your dietitian or RV CARE Partner for other hints on limiting your fluid intake
Medication List It is important for us to know about every medicine, vitamin, and over-the-counter medications you eat or drink. Some things that you may not consider medicines can still affect how your other medicines work. The following are items you should bring with you next time you meet with your RV CARE Partner. Prescription Medicines This includes everything that the doctor has given you a prescription for and everything that you pick up from a pharmacy. Examples include blood pressure pills, insulin, heart medications, inhalers for COPD or asthma, Coumadin (blood thinner), digoxin, as well as medicines for your thyroid or cholesterol. Over-the-Counter Medicines This includes everything that you buy that does not need a doctor s prescription. Examples include antacid pills, aspirin, pain medicines such as Tylenol or Advil and cold medicines. Vitamins and Supplements Examples include Centrum (or other vitamins), protein drinks, zinc, vitamin B, fish oils, glucosamine and omega fatty acids. Herbal and Alternative Medicines Examples include Echinacea, bee pollen, garlic, ginkgo biloba, SamE and aloe vera
Your Dialysis Catheter Many people start dialysis before they have a fistula placed. A fistula is the preferred dialysis access and has less of a chance of infection and other complications found using a catheter. Until you get a fistula, you will need to use a catheter for dialysis. Your nurses, doctor and RV CARE Partner will work with you to help you get a fistula as soon as possible. As soon as your fistula is strong enough, your team will help you schedule the removal of your catheter. Preparation for getting your fistula Here are some things you can do to make this process go smoothly: Work with your health care team to get the necessary appointments Make all of your appointments Keep your health care team informed about any problems you may have with getting to your appointments Once the fistula is placed, follow your doctor s orders to get your fistula ready for use Meanwhile, take good care of your catheter. Keep your catheter clean and dry. Ask your doctor, nurse or RV CARE Partner how to protect your catheter. Do not pull or tug on the catheter, especially while getting dressed and undressed. Watch for signs of infection: redness, swelling, pain, puss or fever. Call your dialysis center right away if you notice any of these. During dialysis, be sure the staff person who will connect your catheter to the dialysis tubing washes his or her hands first and wears gloves and a mask. You should wear a mask, too. The ends of the catheter should never be left open to the air. Never use scissors near or around your catheter for any reason. With good care, a catheter can be a helpful bridge while your fistula or graft is getting ready to use.
Saving Your Heart People with kidney disease will sometimes also have a heart that is larger than normal. This is something that happens over a long period of time and causes the heart to pump blood slowly. This results in fluid buildup. Normal Heart Enlarged Heart There are tests you can have to see if your heart is too large. The most common test is called an ECHO, which is short for echocardiogram. Some people also have an MRI or a CT scan. If you have not had one of these tests in the past several months, your RV CARE Partner will help you get an appointment. If the test results show you have an enlarged heart there are several things you can do to help keep your heart as healthy as possible. Ask your doctor or nurse what your true weight is (without extra water in your body).this is called your dry weight Once you know your dry weight, it is important that you stay as close to that weight as possible. You should not gain more than two-to-four kg of fluid between your dialysis treatments Get enough dialysis. Anyone with an enlarged heart should dialyze at least four hours, three times a week. More dialysis is better. Talk to your doctor about the amount of time on dialysis that is best for you Take your medicines. Your doctor will prescribe a special medicine for your heart. It is important to take all your medicines as prescribed Follow a low sodium diet. Ask your dietitian for information on the diet Be physically active 20 to 30 minutes a day to help rid your body of excess fluids
Getting Enough Dialysis: Peritoneal Dialysis Dialysis helps you feel better, live longer and improves your overall health. Below are some ways getting enough dialysis helps you. Dialysis is a method of removing wastes, extra fluid and other toxic substances from the blood when the kidneys are unable to do so. Without dialysis, the waste products will build up in your system and make you feel sick. When your kidneys fail, fluid can build up all over your body including your lungs. This can make it hard for you to move or breathe. In most cases, dialysis is the only way you can get rid of water. Dialysis also helps by decreasing your blood pressure. Healthy kidneys filter the waste and water 24 hours a day. When your kidneys fail, you are on dialysis to clean your system. It is important that you dialyze every day. The more dialysis you get the better you will feel. Urea, a waste product will build up in your system and results in following symptoms. Having any of the symptoms below may mean you are not getting enough dialysis: Loss of appetite Headache Bad taste in your mouth Trouble concentrating Nausea or vomiting Drowsiness during the day Difficulty falling asleep at night Restless legs Tired or weak If you have any of these symptoms tell your RV CARE Partner, doctor or nurse. Ask if more dialysis will help or if something needs to be changed with your dialysis.
Getting Enough Dialysis When dealing with Chronic Kidney Disease, dialysis helps you feel better, live longer and improve your overall health. Dialysis is a method of removing wastes and other toxic substances from the blood when the kidneys are unable to do so. Without dialysis, the waste products will build up in your system and make you feel sick. Dialysis removes extra fluid. When your kidneys fail, fluid can build up all over your body including your lungs. This can make it hard for you to move or breathe. In most cases, dialysis is the only way you can get rid of water. Dialysis also helps by decreasing your blood pressure. Healthy kidneys filter the waste and water 24 hours a day. When your kidneys fail, you are on dialysis to clean your system. It is important to dialyze long enough. There are 168 hours in a week, and you may only have about 12 hours of dialysis about 7% as much as healthy kidneys. If you miss just two minutes of each treatment, it adds up to more than five hours of dialysis missed per year. The more dialysis you get the better you will feel. Symptoms of dialysis deficiency Having any of the symptoms below may mean you are not getting enough dialysis: Dizzy, faint, lightheaded Ringing in the ears Racing pulse Feeling warm, sweating Nausea or vomiting Yawning Itching Severe muscle cramps (anywhere in the body) If you have any of these symptoms tell your RV CARE Partner, doctor or nurse. Ask if more dialysis will help.
Dialysis Adequacy Labs You and your dialysis team will want to know how well hemodialysis is cleaning your blood. Two lab tests will be drawn each month to make sure your treatments are effective. The lab tests are Urea Reduction Ratio (URR) and Kt/V. URR (Urea Reduction Ratio): Once a month, your dialysis team will take a tube of blood right as you start dialysis. They will also take a tube of blood at the end of your dialysis treatment. The two levels are compared and you are given a URR number. This number tells you how well the dialysis is cleaning your blood for that treatment only. Your URR level should be at least 70%. The higher your number is, the better your blood is cleaned. Sometimes your doctor will increase the length of time of your treatment so your blood can get cleaner.urr is easy to calculate, but it does not take body weight into account. It also does not take into account the amount of time it takes to remove fluid during your treatment. A more precise measure of hemodialysis adequacy is call Kt/V. Your Kt/V level should be at least 1.4. Kt/V (kay-tee-over-vee) stands for: K = dialyzer clearance in ml/min t = length of the dialysis treatment in minutes (time) V = volume of water in the body that contains urea (waste products) To figure out your Kt/V, a BUN level and weight are checked before and after a treatment. The results are put into a formula. Your goal for Kt/V is greater than 1.4%. The higher the number, the better, so the more time you are on dialysis, the better your Kt/V will be. These labs are often difficult to understand. Your RV CARE team will review your lab results with you each month.
Education & Patient Resources Renal Support Network (RSN): www.rsnhope.org The RSN is a nonprofit, patient-focused, patient-run organization that strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them (and their family members) to take control of the course and management of the disease. Kidney School: www.kidneyschool.org Learn kidney disease and self care through interactive patient education modules on 16 topics from Life Options. Staying Healthy With Bad Kidneys: www.doctome.com Free, online education provided by doctors and designed for people with CKD. Selected talks, preserving kidney function, eating right, bone health, transplant decisions, anemia, blood pressure and dialysis choices are discussed. How Your Kidneys Work: www.howstuffworks.com/kidney.htm A thorough but friendly education on the many functions of the kidneys. National Kidney Foundation: www.kidney.org/patients Learn about your kidneys, prevention and management of complications. Join message boards, read blogs from other patients and their family members. Amyloidosis and Kidney Disease: http://kidney.niddk.nih.gov/kudiseases/pubs/amyloidosis/ This is a disease of the bones and joints that can arise as a complication of long-term dialysis. The Kidneys: http://users.rcn.com/jkimball.ma.ultranet/biologypages/k/kidney.html Detailed medical description of the many functions of the kidneys. Includes a description of the artificial kidney used in hemodialysis and a University of Minnesota presentation, with lots of technical information about hemodialysis. Peritoneal Dialysis (PD): http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/index.htm Offers good descriptions of what is involved with PD and tips to make life with PD easier.
Kidney End-of-Life Coalition: http://www.kidneyeol.org/ This website is dedicated to those patients and to all the caring staff in hospitals, dialysis units, and hospice organizations who are committed to helping patients with death, the final stage of growth. The Nephron Information Center: www.nephron.com Resource for patient, professionals and the public to the policies and research pertaining to kidney disease, preesrd education, and Fadem's Kidney Guide. American Association of Kidney Patients: http://www.aakp.org/ The AAKP is a national non-profit organization founded by kidney patients for kidney patients to educate and improve the health and well-being of chronic kidney disease (CKD) patients, those on hemodialysis, peritoneal dialysis and transplant recipients. Other Resources National Kidney Foundation Serving North Texas: www.kidney.org The NKF provides vital patient and community services, conducts extensive public and professional education, advocates for patients through legislative action and supports kidney research. Toll Free: (877) 543-6397 American Kidney Fund: Email: patientservice@kidneyfund.org Address: 6110 Executive Blvd., Suite 1010, Rockville, MD 20852 Phone: 800-638-8299. The American Kidney Fund provides treatmentrelated financial assistance to people in the United States who are living with chronic kidney disease. Dialysis at Sea Cruises: www.dialysisatsea.com Since 1977, this largest provider of dialysis services aboard cruise ships has provided treatment and services to thousands of travelers. Each cruise has a nephrologist and one or more dialysis nurses. Patients can "beep" the shipboard dialysis staff 24 hours a day. Book early for best cabin selection and dialysis treatment time. Phone: (800) 544-7604 Texas Kidney Healthcare: www.dshs.state.tx.us/kidney Phone: (800)222-3986 The Kidney Health Care Program (KHC) provides financial assistance to people with end-stage renal disease get their health care services such as, dialysis treatments, access surgery, drugs, travel to health care visits and Medicare premiums.
Dialysis Treatment Options You have choices. Because your kidneys no longer work, you depend on other ways to keep your blood clean and to get rid of extra water. Talk with your nurse, doctor or RV CARE Partner about the choice that may work for you. What are my dialysis treatment options? Dialysis is a method of removing wastes and other toxic substances from the blood when the kidneys are unable to do so. It removes extra fluid, which helps control blood pressure, and helps to maintain safe levels of substances in the blood, such as potassium, sodium, phosphorus, calcium and bicarbonate. Hemodialysis works by circulating the blood through special filters outside the body. Blood is rerouted from the body via catheter or permanent access port and passed through a filter before returning to the body. It is typically performed at a specialized facility three times each week. However, with the right supervision, in home dialysis may also be an option. Peritoneal Dialysis is performed daily by filling the abdomen with a special solution, waiting for a period of time, and then draining the solution. The patient typically performs this type of dialysis at home.