Discovering
  Dialysis
a manual for kidney and dialysis patients




                         Provided By:
     Kidney Fou...
printing for this publication has been provided by:
A Manual for
Kidney & Dialysis
    Patients
                             courtesy of

 THE KIDNEY FOUNDATION OF THE GREATE...
Table of Contents

Part 1 – Clinic Information
  General Introduction .......................................................
EMERGENCY CONTACT INFORMATION

UNIT NAME: _____________________________________________________________________

UNIT ADDR...
PART I
CLINIC INFORMATION




                     page 1
General Information about the Dialysis Clinic

Your dialysis treatments should not be skipped. Try not to schedule other a...
A Typical Day on Dialysis

You will receive detailed instructions during your first dialysis treatment. There are general ...
12. The machine alarms and equipment are checked to insure your safety. Don’t be frightened if you
   hear the machine bee...
PART 2
KIDNEY DISEASE




                 page 5
page 6
The Normal Kidney

To understand kidney failure, you need to know something about the kidneys and how they work.

       T...
The kidney is usually only thought of as producing urine. Actually, the kidney performs
many other extremely important fun...
PART 3
RENAL FAILURE &
DIALYSIS




                  page 9
page 10
Causes of Kidney Failure

There are many causes for kidney failure: high blood pressure, diabetes, hereditary disease, dru...
the person to become confused or unconscious, and overloaded with fluids. Often the patient is
placed on a special diet, f...
Problems of Kidney Failure



When kidney failure begins, you may see a number of signs and symptoms. Some of these are
al...
3. Transfusions may prevent your body from making blood for itself.


Kidney failure also affects the stomach and G.I. tra...
Common Questions Asked About Complications


1. What if I don’t feel like coming for my treatments?
   If you think you ar...
5. Is it unusual to have problems falling asleep?
   Not at all. Many patients with kidney failure have difficulty going t...
PART 3
MEDICAL NEEDS




                page 17
page 18
Medications


All kidney patients have to take some medicines. Most patients have to take vitamins and iron pills.
Some pa...
with your meals, so it mixes with your food and prevents the phosphorus in the food from being
   absorbed.


4. Why must ...
Medications

MEDICATIONS THAT MOST PATIENTS TAKE

          Medicine                        Reason                  Specia...
MEDICATIONS THAT SOME PATIENTS TAKE

       Medicine                    Reason              Special Instructions          ...
HELPFUL HINTS ABOUT MEDICATIONS
•   Learn the name of each medicine you take, the dose you should take, and its purpose. A...
Your Numbers -- Lab Tests
                                    (Blood Chemistries)

You will have lab work checked once a m...
When you are off your diet, the BUN will usually be higher. If you follow your diet and dialyze the
right amount of time, ...
Blood Chemistries
  (This guide was put together by the staff of Good Samaritan Hospital Chronic Dialysis Center, Bay Shor...
Blood      Normal Values   Accepted Normals For     Causes of Abnormal       Signs and Symptoms
  Chemistry               ...
Blood         Normal Values     Accepted Normal For        Causes of Abnormal       Signs and Symptoms
  Chemistry        ...
The Renal Diet

Managing your diet is an important part of the overall treatment of kidney disease. A special diet is
usua...
HELPFUL HINTS TO STAY ON YOUR DIET


   ß   Learn about kidney disease so that the importance of the diet is clear. Talk w...
other spices that you can use to add flavor to food. Talk with your dietitian about spices that
   might be good to use.

...
Hepatitis


Hepatitis is a big danger to all dialysis and transplant patients, and for those who are in close contact
with...
with dialysis patients. This reduces the chance that blood will enter a small cut on their
           hands or fingers, or...
Hepatitis Vaccine


There is a vaccine that can help prevent you from getting hepatitis. Your doctor may order this
vaccin...
Vascular Access


To start you on dialysis, you need a vascular access to your blood. This is a way of getting your
blood ...
GORTEX GRAFT
The Gortex graft is a man-made graft like plastic. The graft can be placed under the skin as a
substitute for...
Common Questions About Vascular Access


1. After the access is created, what will happen to the rest of my hand?
   The r...
8. Does it hurt when the needles are put in?
      A small amount of local anesthetic can be used to numb the skin where t...
PART 4
TREATMENT OPTIONS




                    page 39
page 40
Treatment Options

Once the doctor tells you it is time to begin dialysis treatment, you may feel overwhelmed with all

th...
Commonly Asked Questions About Hemodialysis

   1. Does the artificial kidney machine have an effect on my kidneys?

     ...
5. What can I do during a dialysis treatment?

   You may read, watch television, knit or crochet, play checkers or cards,...
own treatment. If home training is not possible, you may wish to consider Continuous

      Ambulatory Peritoneal Dialysis...
15. Will I have cramps while I am on dialysis?

       Some patients do have cramps during the dialysis treatment. This us...
Home Hemodialysis

Once you have started on dialysis, you may want to do your own treatment at home. This is an

option th...
The following questions and answers will give you more information regarding home dialysis.



   1. Who will dialyze me a...
5. How can I be sure that I am ready to go home with a machine?

      During the training sessions, the nurses will gradu...
9. Are home dialysis patients also on the transplant waiting list?

       Yes. Home dialysis patients are on the transpla...
Continuous Ambulatory Peritoneal Dialysis (CAPD)

Continuous Ambulatory Peritoneal Dialysis (CAPD) is one of two treatment...
ADVANTAGES:

   •   No machine

   •   No needles

   •   No helper or assistant needed

   •   Rise in hematocrit

   •  ...
cavity and cause an infection. This infection is called “peritonitis.” The CAPD technique is simple,

but must always be k...
Continuous Cycling Peritoneal Dialysis

Continuous Cycling Peritoneal Dialysis (CCPD) is another kind of peritoneal dialys...
ADVANTAGES:

   •   No Needles

   •   No Helper

   •   Rise in Hematocrit

   •   Improved Appetite

   •   Better contr...
Even though CCPD has many advantages, it is not for everyone. The choice to use CCPD is

made only after assessing the ind...
The kidney transplant surgery is considered major, but low risk surgery. Rejection of the

kidney by the body is possible....
3. How long do patients stay in the hospital after a transplant?

   A transplant patient usually stays in the hospital fo...
8. Will I be able to drink as much as I want?

      If the transplant is successful, you will generally be able to drink ...
14. Are there advantages to receiving a live donor kidney?

   Yes, the two main advantages are that the success rate is b...
page 60
PART 5
SOCIAL SERVICES




                  page 61
page 62
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
Discovering Dialysis
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Discovering Dialysis

  1. 1. Discovering Dialysis a manual for kidney and dialysis patients Provided By: Kidney Foundation of the Greater Chattanooga Area 423.265.4397 http://www.kidneyfoundation.com Revised 2004
  2. 2. printing for this publication has been provided by:
  3. 3. A Manual for Kidney & Dialysis Patients courtesy of THE KIDNEY FOUNDATION OF THE GREATER CHATTANOOGA AREA 423.265.4397 http://www.kidneyfoundation.com printing for this publication has been provided by:
  4. 4. Table of Contents Part 1 – Clinic Information General Introduction .................................................................................................................. 2 A Typical Day On Dialysis ........................................................................................................ 3 Part 2 –Kidney Disease The Normal Kidney ................................................................................................................... 7 Part 3 –Renal Failure and Dialysis Causes of Kidney Failure ........................................................................................................... 11 Problems of Kidney Failure........................................................................................................ 13 Common Questions Asked About Complications ....................................................................... 15 Part 3 – Medical Needs Medications .............................................................................................................................. 19 Lab Tests ................................................................................................................................... 24 Blood Chemistries...................................................................................................................... 26 The Renal Diet ........................................................................................................................... 29 Helpful Hints to Stay on your Diet ............................................................................................. 30 Hepatitis..................................................................................................................................... 32 Hepatitis Vaccine ....................................................................................................................... 34 Vascular Access ......................................................................................................................... 35 Common Questions About Vascular Access............................................................................... 37 Part 4 – Treatment Options Treatment Options...................................................................................................................... 41 Common Questions About Hemodialysis ................................................................................... 42 High Flux Dialysis and High Efficiency Dialysis ....................................................................... 45 Home Hemodialysis ................................................................................................................... 46 Continuous Ambulatory Peritoneal Dialysis (CAPD) ................................................................. 50 Continuous Cycling Peritoneal Dialysis (CCPD)........................................................................ 53 Transplantation .......................................................................................................................... 55 Part 5 – Social Services Social Work Services ................................................................................................................. 63 Common Questions About Social Work Services....................................................................... 63 Other Facilities and Organizations of Interest to Kidney Patients................................................ 70 Part 6 – Definitions Glossary..................................................................................................................................... 75
  5. 5. EMERGENCY CONTACT INFORMATION UNIT NAME: _____________________________________________________________________ UNIT ADDRESS:__________________________________________________________________ _________________________________________________________________________________ UNIT PHONE NUMBER: ___________________________________________________________ HOSPITAL: ______________________________________________________________________ HOSPITAL PHONE NUMBER: ______________________________________________________ DIALYSIS DAYS: _________________________________________________________________ DIALYSIS TIME: _________________________________________________________________ DOCTOR: ________________________________________________________________________ DOCTOR PHONE NUMBER:________________________________________________________ PRIMARY NURSE: ________________________________________________________________ PRIMARY NURSE PHONE NUMBER:________________________________________________ SOCIAL WORKER:________________________________________________________________ SOCIAL WORKER PHONE NUMBER: _______________________________________________ DIETITIAN: ______________________________________________________________________ DIETITIAN PHONE NUMBER: ______________________________________________________ 24-HOUR CALL NUMBER: ________________________________________________________ OTHER INFORMATION AND INSTRUCTIONS:
  6. 6. PART I CLINIC INFORMATION page 1
  7. 7. General Information about the Dialysis Clinic Your dialysis treatments should not be skipped. Try not to schedule other appointments on the days you have dialysis. If you are not able to come for your appointment, call the Dialysis Clinic and talk to the nurse in charge. Bradley Dialysis Cleveland, TN 423-476-6166 Chattanooga Kidney Center Chattanooga, TN 423-648-4900 Dialysis Clinic, Inc. Third Street, Chattanooga, TN 423-698-0927 Dialysis Clinic, Inc. Lyerly St. (Glenwood), Chattanooga, TN 423-698-6422 Dialysis Clinic, Inc. East Ridge, TN 423-894-8134 Dialysis Clinic, Inc. Hixson, TN 423-870-0020 Dialysis Clinic, Inc. Broad Street, Chattanooga, TN 423-756-8808 Dialysis Clinic, Inc. Dayton, TN 423-775-3386 Dialysis Clinic, Inc. Ft. Oglethorpe, GA 706-861-6668 Dialysis Clinic, Inc. Lafayette, GA 706-638-6553 Dialysis Clinic, Inc. Jasper, TN 423-942-9977 FMC Dialysis Clinic Athens, TN 423-507-9712 Woods Memorial Dialysis Etowah, TN 423-263-3666 Report for all your treatments ON TIME. Call if you will be more than one hour late. If you come late, you may not receive all of your prescribed treatment. If you are late on a regular basis, you will be scheduled for a conference with your doctor. Please leave children at home. They are not allowed in the treatment area. There is no place for them to stay while you are receiving dialysis. Dress in comfortable clothes. You will sit in a reclining chair for your treatment. You may bring a blanket, an extra pillow, and something to do (a book, handiwork, etc.) while you are here. Unless you have problems with nausea and vomiting, it’s a good idea to eat something before coming to dialysis. You are not allowed to bring food or drinks into the clinic. No drugs are given out at the Dialysis Clinic. If you run out of a medicine, tell your nurse. He or she will have your doctor prescribe a refill. Only take medicines prescribed by your kidney doctor, even if they are over-the-counter drugs. Aspirin, milk of magnesia, and other common medicines can have harmful effects on kidney patients. The clinic will give you Medical ID tags or order them if you ask. Please make sure that the clinic has your correct address and telephone numbers. Let the clinic know immediately of any changes. This allows your doctor or nurse to contact you if any significant problems come up. When you come for your first dialysis treatment, bring ALL your medicines, including any medicines that you received when you were discharged from the hospital. These will be reviewed. If necessary, changes might be made. Your nurse will check your medicines every month, so bring ALL your medicines to the clinic the FIRST week of each month. Please do not bring expensive items to the clinic. If they become lost or stolen, the clinic is not responsible for them. page 2
  8. 8. A Typical Day on Dialysis You will receive detailed instructions during your first dialysis treatment. There are general steps to follow for each time you receive dialysis. We have listed the things you need to do each dialysis to familiarize you with the procedures of the clinic. You may want to come a little early on your first day to sign forms and meet the staff. 1. When you arrive at the clinic, wait in the lobby until the nurse calls you. 2. When you are called into the dialysis area, first go to the scales. The nurse or a technician will check and note your weight. 3. Find your name on the board and the number of the chair you are to sit in. 4. Get all necessary items (magazines) that you may need during dialysis. 5. When you get to your chair, make sure your name is correct on your artificial kidney. 6. If you have a graft, wash your arm or thigh with the Betadine scrub provided on the table next to your chair. 7. Several procedures will be carried out throughout the dialysis including: • blood pressure reading • pulse rate • blood flow rates (how fast your blood is moving through the artificial kidney) • machine adjustments 8. A nurse will take your blood pressure (sitting and standing), your pulse, and temperature and note them on your chart. 9. The nurse will place a cleansing solution on your graft or fistula and let it set for three minutes. 10. If you have a graft or a fistula, the nurse will insert two special needles into your arm. A medicine to numb your skin can be used, if you want. 11. Once the needles are inserted, the nurse will connect the blood lines to the needles and turn on a pump. The pump pulls blood from your body, sends it through the artificial kidney, and returns it to your body. page 3
  9. 9. 12. The machine alarms and equipment are checked to insure your safety. Don’t be frightened if you hear the machine beep. This is a necessary test. 13. The machine is adjusted for your fluid weight. 14. While you are dialyzing, two blood samples are removed from the blood lines to test how fast your blood clots. The results of this these tests determine how much medicine (Heparin) that you need to prevent clotting of your blood within the artificial kidney. 15. Near the end of dialysis (15 minutes to an hour before the end of the process), the heparin is turned off so your blood can return to its normal clotting time. This will keep you from bleeding too long after your dialysis. 16. If you have a fistula or graft, the blood line carrying the blood from the body is disconnected from the needle and the remaining blood in the machine is returned to you. The needles are then removed, and pressure is placed over both needle holes. If you are able to hold pressure on your needle sites, the nurse will instruct you on how to do this. Continue pressure on this area for 10 minutes or longer to make sure that all the bleeding is stopped. When the bleeding has stopped, band-aids or pressure dressings are placed over the two needle holes. 17. Your blood pressure, pulse and temperature will be taken and recorded on your chart. 18. Have your nurse weigh you again. 19. Put away your magazines and place your linens in the laundry hamper. Gather your belongings before you leave. page 4
  10. 10. PART 2 KIDNEY DISEASE page 5
  11. 11. page 6
  12. 12. The Normal Kidney To understand kidney failure, you need to know something about the kidneys and how they work. The urinary tract contains two kidneys, two ureters, a bladder, and one urethra. The kidneys are small. Each kidney is about the size of your fist. They are located in the middle of your back, on each side of your spine just below the ribs. When the blood enters the kidney, it is cleaned when it passes through lots of blood “filters,” known as nephrons. The waste materials filtered out of the kidney go through the ureters--tubes that connect the kidneys and the bladder. Urine is made in the kidneys and moves from the kidneys through the ureters to the bladder, where it is stored. When this waste (urine) reaches the bladder, it is stored and then sent out through the urethra, a tube that takes the urine from the bladder to outside of your body. Urine is constantly flowing from the ureters into the bladder. However, the urine goes out of your body from the bladder through the urethra only when you go to the bathroom. Any remaining urine is stored in your bladder. Since urine eventually leaves the body, it is a waste product. page 7
  13. 13. The kidney is usually only thought of as producing urine. Actually, the kidney performs many other extremely important functions. 1. Controls Blood Pressure The kidneys play an important role in controlling blood pressure. When blood pressure is high, the kidneys get rid of excess salt (sodium) and water. When blood pressure is low, the kidney saves salt and water. The kidney also produces a hormone called renin. Renin affects a protein in your bloodstream, which helps raise blood pressure. 2. Helps Produce Red Blood Cells Another function of the kidneys is to control the formation of red blood cells, which are usually produced in bone marrow. The kidneys produce erythropoietin that helps to produce red blood cells by stimulating the bone marrow. 3. Helps in Absorbing Calcium The kidneys also activate vitamin D, which is produced in the skin based on what you eat in your diet and from sunlight. This vitamin is changed by the liver and by the kidneys. When changed, vitamin D helps your body absorb calcium, which is important to prevent your bones from becoming soft. The kidneys are vital organs that play many roles. When kidney failure occurs, your body’s systems are disturbed, causing many changes. page 8
  14. 14. PART 3 RENAL FAILURE & DIALYSIS page 9
  15. 15. page 10
  16. 16. Causes of Kidney Failure There are many causes for kidney failure: high blood pressure, diabetes, hereditary disease, drug abuse and infection. A few of the more common ones are outlined in this booklet. COMMON CAUSES OF KIDNEY FAILURE Uncontrolled High Blood Pressure Drug Abuse Infection Hereditary Polycystic Kidneys There are two main types of kidney failure: acute and chronic. Acute failure usually happens suddenly and often is reversible. In comparison, chronic renal failure develops over a longer period of time, is usually not reversible. This means the kidneys will never regain their function with chronic renal failure. Acute renal failure can happen because of a trauma (such as a wound or an injury), disease, ingestion of poison or drugs, shock, or infection. As a result of this trauma, the kidney is temporarily damaged and stops producing urine. Poisons build up in the bloodstream, which causes page 11
  17. 17. the person to become confused or unconscious, and overloaded with fluids. Often the patient is placed on a special diet, fluid restrictions and temporary dialysis. After a few weeks, the patient’s kidney function usually returns to normal. Chronic renal failure usually requires dialysis treatment for the rest of a patient’s life. The most common causes of chronic renal failure are: chronic glomerulonephritis, pyelonephritis, polycystic kidney disease, diabetic renal failure, and hypertensive nephrosclerosis. • Chronic glomerulonephritis — Glomerulonephritis, which has several causes, is an inflammation of the glomeruli-small structures in the kidneys. The inflammation interferes with how your urine is cleaned or filtered. As the disease develops, scar tissue replaces the inflamed areas and causes the blood circulation to slow down. The nephron is starved of its blood and withers. • Chronic pyelonephritis — Pyelonephritis is an inflammation of the kidney that affects the tubules of the nephron and eventually the glomerulus. The infection causes the kidney to lose its ability to produce urine. The cause of the infection may be from the bloodstream or the bladder. • Polycystic kidney disease — Cysts on the tubules is called polycystic kidney disease. The tubules don’t develop properly and the cysts begin to grow. Over time, the cysts get bigger and put pressure on the tissues close to them. This pressure can affect the job of the normal nephrons. The kidneys soon stop producing enough urine to get rid of the body’s waste. • Diabetic renal failure — Diabetic renal failure happens when diabetes causes the renal arteries to scar. This interferes with the proper filtration of urine. • Hypertensive nephrosclerosis — This type of renal failure happens when a patient has high blood pressure over a long period of time. This causes the blood vessels of the kidney to scar. When enough of the blood vessels are scarred, the kidneys can no longer filter enough of the body’s waste. There are other causes of kidney failure and the above descriptions are by no means inclusive. For more information about your type of kidney failure, talk with your doctor. page 12
  18. 18. Problems of Kidney Failure When kidney failure begins, you may see a number of signs and symptoms. Some of these are alarming and baffling. Some of these problems are discussed here. We hope this will relieve any of your concerns and increase your understanding of your condition. As kidney failure progresses, the amount of urine you pass will probably go down. Because the kidneys no longer filter as much fluid, the extra fluid remains in your bloodstream and tissues. The increase in fluid in the bloodstream leads to high blood pressure and puts an increased workload on your heart. An increased workload on the heart can cause an irregular heart rate and congestive heart failure. After dialysis is started and the fluid is removed, your blood pressure may drop. Your doctor may be able to decrease the blood pressure medicines you take. Symptoms of congestive heart failure also improve with dialysis. Kidney failure may also affect your heart by causing pericarditis, a swelling and redness of the sac around the heart. Pericarditis can cause chest pain and weakness. Once dialysis is started, pericarditis should get better. Occasionally, dialysis patients receiving regular kidney treatments will get pericarditis. Usually increasing dialysis treats this condition. Kidney failure can also cause shortness of breath and pulmonary edema (swelling of the lungs), because of extra fluid in the bloodstream and lungs. This should go away once regular dialysis treatments are started, but it may come back if you drink too many liquids between treatments. Most kidney patients have low blood counts (anemia) due to three main reasons. 1. A decrease in a hormone that helps the body to produce red blood cells. This hormone is called erythropoietin. 2. A decrease in how long the red blood cells live. 3. Loss of blood while on dialysis. If your blood count stays low and causes you problems, your doctor may order a blood transfusion. But, transfusions are avoided, if possible, because of the following reasons. 1. Transfusions may transmit hepatitis. 2. Although it has not been proven, a high number of transfusions may interfere with a future transplant. However, they may also be beneficial to transplant patients. page 13
  19. 19. 3. Transfusions may prevent your body from making blood for itself. Kidney failure also affects the stomach and G.I. tract in various ways: 1. Nausea and vomiting, 2. A decrease in appetite, 3. Weight loss, 4. Mouth and stomach ulcers. These symptoms are caused by the build-up of waste (poisons) in the blood. These symptoms improve with regular dialysis, but may occur off and on while you are on dialysis or in between your treatments. Sometimes your feet may tingle or feel numb because your nerves are damaged. This is called neuropathy (nerve damage used by kidney failure). These symptoms should get better with dialysis. When nerve damage occurs, you may feel tried, drowsy, or excited. Or you may have headaches, poor memory, confusion, seizures, or a coma. These symptoms should improve when dialysis treatments start. Itching is a common problem of dialysis patients. It usually is worse when the waste products in the blood are very high. When phosphorus is high, itching may be much worse, and the doctor will probably increase your binders. It’s important to take the binders correctly because a high phosphorus level results in low calcium. When calcium is low, the bones become weak and break easily. Other minor problems caused by renal failure include muscle cramps, arthritis, and blurred vision. Psychological problems may include decreased ability to concentrate, depression, and difficulty sleeping. Other problems may also occur. If you have any questions about these or other problems, ask your doctor or nurse about them. page 14
  20. 20. Common Questions Asked About Complications 1. What if I don’t feel like coming for my treatments? If you think you are too sick to come for your dialysis treatment, it may be that you need the treatment so much that you are beginning to be sick with uremia. Do not miss a treatment because you feel sick. Call your nurse or doctor, and tell them about your symptoms. They may want you to have an emergency treatment. If you must miss a treatment because of work, call your nurse as soon as possible. This way the necessary laboratory tests can be done to make sure your blood levels are still safe and another treatment time can be set up. 2. Why do kidney patients continue to have nausea and vomiting after they have been on dialysis for some time? Usually, nausea and vomiting improve after dialysis is started. However, some patients still have occasional attacks of nausea and vomiting between treatments. This happens sometimes because the kidney machine cannot keep their blood chemistries at normal levels by only working 9-12 hours a week. Many patients have nausea and vomiting while they are on dialysis because their blood pressure falls suddenly or because their blood urea nitrogen (BUN) level drops quickly. A drop in the BUN can also cause headaches. You can minimize these symptoms by following your diet closely so that the BUN is not high at the beginning of dialysis. 3. Is constipation a problem for dialysis patients? Yes. This is because vegetables and other sources of roughage are limited in the diet. Physical activity is usually reduced and binders (such as Phos-Lo, used to control your phosphate levels) can also cause constipation. If you are constipated, your doctor can prescribe a mild laxative. 4. Does blurred vision happen very often? Yes, it is quite common before your first dialysis is performed. It may also happen near the end of a dialysis treatment, especially if the level of waste products in your blood were high at the beginning of your treatment. Vision usually clears up after the first several dialysis treatments. page 15
  21. 21. 5. Is it unusual to have problems falling asleep? Not at all. Many patients with kidney failure have difficulty going to sleep. If this bothers you, mention it to your doctor, who can prescribe a mild sedative. 6. What can I do for the itching? • Regular dialysis. • Take your binders regularly. • Use skin lotions. • Ask your doctor about medicines to relieve the itching. 7. Is there a reason why I might feel tired at times? Most patients with kidney failure are anemic even after they start dialysis. Being anemic means their red blood cell count is a lot lower than normal. This low blood count can make a patient feel tired. 8. Will my sex life change? Many patients on dialysis notice that their interest in and enjoyment of sex is decreased. 9. Can anything be done about this change in my sex life? In some cases, hormone treatments will improve the situation. Like all other problems, mention any difficulty you have to your nurse or doctor so that proper treatment can be started. 10. Can a woman dialysis patient have a baby? A few such cases have happened. Most women do not ovulate while they are on dialysis, so it is unlikely they can get pregnant. To be safe, we recommend that you continue to use your usual means of birth control. We recommend that female dialysis patients do not try to have children. 11. Can a male dialysis patient still father children? The sperm count is low in many male dialysis patients, and some have difficulty with impotence (inability to have intercourse). However, many male dialysis patients do father children. page 16
  22. 22. PART 3 MEDICAL NEEDS page 17
  23. 23. page 18
  24. 24. Medications All kidney patients have to take some medicines. Most patients have to take vitamins and iron pills. Some patients also need medicines to meet their specific needs. Because your pills are based on what you need, take only the medicines prescribed for you by your kidney doctor. If another doctor prescribes a medicine for you, check with your kidney doctor. Never take pills that belong to your family, friends, or other patients. Kidney patients should never take over- the-counter drugs without the asking their doctor first. These medicines may contain harmful ingredients. Follow all of the directions for each medicine. Each has a special purpose to meet your special needs. Problems may occur if you don't take them as prescribed. Learn the names of all your medicines and why you are taking them. This can help you, and your doctor and nurses. You must bring ALL of your medicines to the dialysis clinic during the first week of each month. The nurse will check each medicine and review the correct dosage and schedule with you. If you have not started on dialysis at the outpatient clinic, please bring your medicines with you on your first clinic visit. The nurses will write down your medicines on your chart and make sure you are taking them correctly. Kidney patients often ask the following questions about medications. 1. How long will I need to take medications? You will have to take some of the medicines as long as you are on dialysis. All patients take certain medicines, and some patients take additional medicines to meet their specific needs. 2. What happens if I don't take the medicine? We will explain the purpose of each medicine and the effects of not taking them. In some cases, not taking your medicines can destroy your bones and cause heart failure. In other cases, you could become very anemic and weak. If you find that a certain drug bothers you in any way, do not stop it. Instead, tell your nurses and doctors. Your doctor may be able to prescribe another drug that works better for you. 3. Why must I take a binder? You must take a binder to protect your bones from becoming weak and to avoid getting calcium deposits in your heart and other vital organs. These are very serious problems. Take the binder page 19
  25. 25. with your meals, so it mixes with your food and prevents the phosphorus in the food from being absorbed. 4. Why must I take vitamins? Vitamins are limited in the renal diet for kidney patients. Many vitamins are removed during dialysis. All dialysis patients take vitamins. 5. Why must I take iron? Some blood is lost during each dialysis. Iron tablets will replace the iron lost during the treatment process. page 20
  26. 26. Medications MEDICATIONS THAT MOST PATIENTS TAKE Medicine Reason Special Instructions Phosphorus Binders Controls how much Take with meals and with • Phos-Lo (calcium acetate) phosphorus is absorbed snacks (except a fruit snack). • Os-Cal 500 (calcium from foods. carbonate) Do not skip dosages. • Tums carbonate Too much phosphorus can • Tums E-X carbonate cause kidney-related bone Don’t take iron at the same • Magnebind 400 disease. time. • Renagel 800 mg • Renagel 400 mg Iron supplements Prevents iron deficiency. Take between meals. • Ferrous sulfate • Ferrous fummerate (various Helps build blood, replaces Do not take at the same time brands) the iron lost with blood in as phosphorus binders. • Niferex-150 the dialyzer and when blood • Nu-Iron 105 samples are drawn. If stomach upset occurs, you (polysaccharide-iron may need to change the type complexes) of iron you take. Polysaccharide-iron complexes are usually tolerated best. Vitamins Replaces the water-soluble Take any time. • Nephrocap vitamins C and B-complex • Nephrovite that can be lost during the dialysis treatment. (These vitamins are specially designed for patients with kidney disease). page 21
  27. 27. MEDICATIONS THAT SOME PATIENTS TAKE Medicine Reason Special Instructions Possible Side Effects Blood pressure Controls blood If blood pressure is low Tiredness, medicine pressure when proper for you, do not take weakness dizziness, control of sodium and blood pressure lightheadedness. water does not bring medicine. blood pressure down. Digoxin or Lanoxin Increases the force of Take your pulse before Weakness, the heart when it taking digoxin. hypotension, contracts, increases nausea and cardiac output. Do not take digoxin vomiting, diarrhea, unless your pulse rate slow heart rate. is 60 or higher. Itching Medicines Decreases the amount Take as prescribed. Drowsiness, dry • Benadryl of itching. mouth, dizziness. • Temaril • Atarax Stool softeners Prevents constipation. Take as needed, Diarrhea. • Metamucil usually one every day. • Dulcolax • Pericolace • Sorbitol Pain reliever Relieves pain. Should be used only Taking too much • Tylenol when necessary. may result in • Darvon dependence. Hormones To raise hematocrit Take as prescribed. Slightly increased • Male hormones (blood count) risk of forming • Nandrolone blood clots. WARNINGS • DO NOT take any medicines not approved by your kidney doctor. • Antibiotics are not given for colds. Some antibiotics cannot be used for people whose kidneys have failed. • Over-the-counter drugs can be dangerous. Never take new medicines of any kind that are not prescribed by your kidney doctor. Never take home remedies unless approved by your doctor. • DO NOT change your dosages on your own. • Some medications can be habit forming. Take only as directed. • When having prescriptions filled, never allow the pharmacist to substitute a drug without first talking to your physician. page 22
  28. 28. HELPFUL HINTS ABOUT MEDICATIONS • Learn the name of each medicine you take, the dose you should take, and its purpose. Ask your nurses or doctors whenever you have questions about your medicines. • Get all of your medicines at one drug store. The pharmacist will get to know you and your medications and help you when you need it. • Carry an updated list of your medications with you at all times. This is very important in emergencies. • Establish a routine. Pick specific times to take your medications. page 23
  29. 29. Your Numbers -- Lab Tests (Blood Chemistries) You will have lab work checked once a month in the dialysis clinic. This lab work is referred to as your panel. The results of the lab work are called your “numbers.” The nurse or dietitian will review results with you each month and explain them to you. Numbers • Are done monthly. • Tell if your diet is in order or if you are well dialyzed. You will be especially interested in a few of the numbers that the doctors and nurses will check closely. They might need to adjust your diet or dialysis to improve some of your lab test results. The following tests will be covered in more detail: A. Potassium B. BUN (blood urea nitrogen) C. Phosphorus D. Hemoglobin and Hematocrit POTASSIUM Potassium is a particle in your cells and bloodstream. It is important to the function of your cells, muscles, and heart. Most kidney patients have a high potassium level before dialysis because almost all foods contain potassium, and the kidneys can't get rid of the excess. Potassium can collect in your bloodstream and make your heart beat irregularly or even stop. Some foods that are high in potassium are: oranges, bananas, chocolate, and potatoes. Many high protein foods are also high in potassium and must be limited. Some foods must be totally eliminated due to their high potassium content. The dietitian will tell you more about how much potassium you can have in your diet and what foods to eat and not to eat. BUN (Blood Urea Nitrogen) BUN stands for blood urea nitrogen. Urea is the waste product that comes when your body processes protein from what you eat. How much urea is in the blood is measured by the BUN test. page 24
  30. 30. When you are off your diet, the BUN will usually be higher. If you follow your diet and dialyze the right amount of time, your BUN should stay in a satisfactory range. PHOSPHORUS Phosphorus is usually excreted by the kidneys. Due to kidney failure, phosphorus builds up in the blood and causes the calcium to drop. This leads to a breakdown of the bones. Phosphorus can be controlled with adequate dialysis and medicine (binders) that bind the phosphorus so that it will be excreted by your bowels. When your phosphorus goes up, the doctor will probably increase your binders. HEMOGLOBIN AND HEMATOCRIT Kidney patients are usually anemic, so we will keep a close check on your hemoglobin and hematocrit. These two tests measure the amount of oxygen and the number of red blood cells in your blood. If your blood count gets too low, your doctor may order a blood transfusion for you. He may want you to take iron pills or iron shots to build up your blood count. If you should need a blood transfusion, you will get it while you are on the kidney machine. There are other tests that are checked with your monthly panel. If you have questions about any of your lab work, ask your doctor or nurse. YOU WILL BE ENCOURAGED TO PARTICIPATE IN THE REVIEW OF YOUR NUMBERS. page 25
  31. 31. Blood Chemistries (This guide was put together by the staff of Good Samaritan Hospital Chronic Dialysis Center, Bay Shore, New York) Blood Normal Values Accepted Normals For Causes of Abnormal Signs and Symptoms Chemistry Dialysis Patients Levels of Abnormal Values (Refers to increases in, unless otherwise noted) Glucose 80-120mg/dL 80-120mg/dL Diabetes, persistent Excessive thirst uremia. Will be slightly higher within 1-3 hours after eating a meal. BUN 10-26mg/dL 60 -100 Eating too much Fatigue, nausea, Depends on how protein-containing insomnia, dry and much protein you eat. food. itching skin, taste and smell affected, Or could indicate the urine-like body odor need for more dialysis and breath. time, higher blood flow of a larger dialyzer. CO2 Bicarb 21-30mEq/L Not less than 15-16 Eating too much Rapid breathing, protein, creating a shortness of breath more acid blood and lowering C02 Sodium (Na) 133-145mEq/L 133-145mEq/L Eating too much salt, Thirst. Leads to e.g., potato chips, drinking more fluid, ham, pickles. causing fluid weight gain, elevated blood pressure and shortness of breath. Chloride (CL) 95-108mEq/L 95-108mEq/L Same as Sodium Same as Sodium Creatinine Below 10-20. Varies with Inadequate dialysis Non-specific 1.2mg/dL how much muscle time or addition of symptoms mass you have. muscle associated with Should remain about inadequate dialysis. the same as at start of dialysis from treatment to treatment. Only the most muscular of patients should have values in the upper range. Potassium 3.5-5.4 mEq/L 4.0– 6.0 Eating too many foods Extreme weakness (K) Few symptoms below high in potassium that can lead to a 7.0 in dialysis heart attack (cardiac patients arrest). page 26
  32. 32. Blood Normal Values Accepted Normals For Causes of Abnormal Signs and Symptoms Chemistry Dialysis Patients Levels of Abnormal Values (Refers to increases in, unless otherwise noted) Calcium (Ca) 8.5-10.5 8.0-10.0 Low calcium: eating Low: Muscle mg/dL Should be near upper too much high twitching and range if normal to phosphorus food. Not cramping, seizures, prevent overactive taking phosphate varying degrees of parathyroid glands. binders. Calcium will depression, hair loss, go down if phosphorus cataracts and goes up. conjunctivitis. High calcium: High: Muscle Medications such as weakness, fatigue, Rocaltrol may cause constipation, sharp increase. Check abdominal cramps, blood regularly. nausea, vomiting, Parathyroid gland loss of appetite, removal may be coma. indicated. Phosphorus 3.0-5.0 mgldL 3.0 – 6.0 High: Not taking High: Causes (Phosphate) phosphate binders, elevated parathyroid (PO4) eating high- hormone by lowering phosphorus foods, calcium. e.g., milk, cheese, organ meats, beans. High and low: Breaking of bones Low: Taking too much without specific phosphate binder. injury (spontaneous fractures), continuous bone pain especially hips, knees and ankles, heels. Calcium- Multiply calcium and High: calcification of phosphate phosphorus blood blood vessels product (Ca values—should not including coronary XPO4) exceed 55. arteries. Magnesium 1.7-2.3 mg/dL 1.7-2.3 mg/dL Elevations due to Decreased mental (mg) taking phosphate function ranging binders containing from drowsiness to, magnesium or other in severe cases, medications such as coma. Decreased milk of magnesia or tendon reflex leading citrate of magnesium. to paralysis. Nausea and vomiting, hypotension due to dilation of blood vessels. Hematocrit 36-45% Will be lower varies Decreased production Fatigue, shortness of (Hct) [% of total with patient of red blood cells, breath, chest pain on blood volume blood loss during or exertion (if made up by after dialysis, underlying heart red cells] shortened survival of disease is present). red cells. Enzymes Check normal Check with your Check with your Check with your for your lab. doctor. doctor. doctor. page 27
  33. 33. Blood Normal Values Accepted Normal For Causes of Abnormal Signs and Symptoms Chemistry Dialysis Patients Levels of Abnormal Values (Refers to increases in, unless otherwise noted) SGOT 10-50 U/mL 10-50 U/mL Hepatitis None, or nausea, Some medicines vomiting, abdominal cramping, fatigue if severe liver damage. SGPT 7-33 U/mL 7-33 U/mL Hepatitis None, or nausea, Some medicines vomiting, abdominal cramping, fatigue if severe liver damage. Alkaline 30-115 IU/L 30-115 IU/L Comes from bone or Painful joints, Phosphatase liver weakened bones that could lead to severe From bone: A marker pain and or for how bad deterioration parathyroid-caused requiring surgery bone disease might be. (hyperparathyroid- ism). From liver: Marker for diseases involving the liver or gall bladder. Parathyroid Check normals 150- 300 Long-term imbalances Same as evaluated Hormone for your lab. of calcium and phosphorous. (PTH) phosphorus. A brief explanation of other tests that are drawn monthly or quarterly. Blood Normal Values Reason For Test Chemistry Australian Negative Test for serum hepatitis (Hepatitis B) Antigen Hepatitis Negative Antibody test to determine if you have ever had hepatitis. Past Antibody episodes of hepatitis would give a positive result. If you have ever had a vaccine for hepatitis B, then you could also have a positive result. Total Protein 6-8 gm/dL Observed for abnormally low levels due to intake of protein foods. Albumin Above 4 gm/dL Measure of nutritional adequacy. Red Blood Cells 4-6 Test for anemia due to decreased RBC production when there is (RBCs) millionlmm3 little or no kidney function. Ferritin 76-155 ng/mL A measure of “stored” iron. Total Bilirubin 0.2-1 mg/dL Elevated level indicates liver damage, e.g., hepatitis, or obstruction of bile ducts. page 28
  34. 34. The Renal Diet Managing your diet is an important part of the overall treatment of kidney disease. A special diet is usually prescribed for renal patients to reduce the production of wastes (and the effects) on your body. You will be on a special diet as long as you are on dialysis. When the “wrong” foods or too much of the “right” foods are eaten, waste products can build up in the blood and cause nausea, vomiting, itching, and weakness. Headaches, shortness of breath, or swelling of the legs may occur also. These may be present some of the time in all patients. Many occur most of the time in patients who do not follow their dietary and fluid restrictions. The kidney machine cannot do as much work in three to four hours, two to three times a week, as your kidneys did working 24-hours a day. You must reduce how hard the artificial kidney must work by following a diet restricted in protein, sodium, potassium, and certain other nutrients. The dietitian will carefully explain your diet to you. Following it is essential to your care because the diet helps reduce production of wastes in the body. Specific waste products that accumulate in the blood include excessive amounts of nitrogen (BUN), phosphorus, sodium, potassium and fluids. Monthly lab values show which waste products may be high in the blood and indicate how well you are following your diet. Although there are some similarities among patients’ diets, each diet is set up specifically for you. Your diet is made for your particular needs and the type of dialysis you are receiving. You may have different diet restrictions or allowances from other patients. You must be responsible for controlling your own diet. A dietitian will help you with what you should eat, how you can prepare meals on the special diet, and will explain how blood chemistries are affected by sticking to your diet. However, it is up to you to actually eat the correct amount and types of foods. No one can do this but you. page 29
  35. 35. HELPFUL HINTS TO STAY ON YOUR DIET ß Learn about kidney disease so that the importance of the diet is clear. Talk with your dietitian. It is easier to follow a diet if you understand it. ß It is your responsibility to ask questions about your diet. ß Get your family or close friends involved in learning about your diet. They can help and support you if you need it. ß You should be honest about food that you like or dislike. Your dietitian can help with recipes and can adjust your diet so it includes food that you like. ß Learn what foods to avoid, the proper amounts of foods you can eat, and how to measure food portions. ß You should not adjust or change your diet without first talking with your dietitian. ß Don’t compare your diets with other patients. Your size, weight, and diagnosis determine which foods your can eat and how much you can eat. Below is a list of questions that may help you. Remember: Talk with your dietitian if you have any questions. 1. How much will I be able to drink on my diet? If you have no urine output, you will be able to consume only 500-1,000 cc of fluid a day. If your kidneys still produce urine, you can drink 500cc plus the amount your kidneys produce. The doctor and dietitian will discuss your fluid intake with you. 2. I have been told to limit how much fluid I drink. How can I avoid being thirsty? Excess salt is the main cause of thirst. You can limit how thirsty you are by limiting how much salt you eat. Patients who do not eat too much salt (sodium) are not thirsty, even if they are only allowed to drink 500-1,000 cc of fluid a day. Sweets also may make you thirsty if you are a diabetic. 3. I just can’t eat food without salt. What can I do? Patients say that it takes two to three months to get used to eating food without salt. After that, food with salt tastes strange to them, just as salt-free food did at first. There are many page 30
  36. 36. other spices that you can use to add flavor to food. Talk with your dietitian about spices that might be good to use. 4. What is high-quality protein? High-quality protein is protein of animal origin. It is called high quality because it has a higher percentage of the components that are necessary to build strong muscles and other tissue. High-quality protein produces fewer waste products than does low quality protein, which is derived from vegetables sources such as beans, corn, and peas. page 31
  37. 37. Hepatitis Hepatitis is a big danger to all dialysis and transplant patients, and for those who are in close contact with them, such as family members and staff who work in the dialysis unit. We do not want to cause excessive concern about this, but we want to see that you are fully informed about the dangers of hepatitis and about the measures that you can take to prevent spreading it. Hepatitis is a virus infection of the liver. In most cases, it causes an acute illness that gradually clears up in two to three weeks or a month or two. In some cases—more often in dialysis patients—hepatitis can lead to a chronic infection that can seriously damage the liver. It is important that you try to prevent the spread of hepatitis. The form of hepatitis most commonly seen in dialysis units is called serum hepatitis because it was once believed that it could only be spread by the transfer of blood or blood products from one person to another (for example, by blood transfusions). Now we know that this form of hepatitis can be spread by other means but it occurs less easily than by contact with the blood. To identify patients and/or staff who have been infected with hepatitis, we do a blood test each month known as the Australian antigen test. The Australian antigen is a factor that can be found in the blood of patients who have had serum hepatitis. A positive test for this factor does not mean that the patient has a serious case of hepatitis, but it does mean that he or she has been infected with the virus at some time and could possibly spread the infection to someone else. Once an individual has had hepatitis, he or she cannot be infected with the same type of hepatitis again, but may carry the virus and possibly can transmit it to others several years after the initial infection. Most kidney patients who develop hepatitis have mild cases. The most common symptom is being more tired than usual. Other symptoms are: skin rash; pain in the hands or joints; yellow color of the whites of the eyes or skin; dark yellow urine (almost brown) or light colored stools; loss of appetite; and nausea, vomiting or diarrhea. To protect patients as well as staff, the following safeguards against contracting hepatitis will be followed at the clinic. 1. Contact with the blood of potentially infected patients should be avoided. Because the test for Australian antigen is not 100 % perfect, we regard all blood as being potentially infected with the hepatitis virus. Our personnel wear disposable gloves when working page 32
  38. 38. with dialysis patients. This reduces the chance that blood will enter a small cut on their hands or fingers, or be spread to other patients. 2. Use care when you handle used needles. This means discarding them in proper containers and seeing that no one is carelessly stabbed with a used needle. 3. Avoid blood transfusions unless they are very necessary. Blood Assurance tests every unit of blood for Australian antigen, but this testing is not 100 % perfect. Transfusions should be kept to a minimum. 4. Use care when cleaning up or getting rid of vomit, urine, stool and other secretions from all patients, particularly those who are known to have a positive Australian antigen test. 5. Patients who are known to be positive for Australian antigen will be isolated from those who are negative. They will dialyze on a special machine set aside for only positive patients. We hope that all patients and visitors will understand the need for regulations that help increase safety of all patients, visitors, and staff. Please understand that staff members are exposed to hepatitis every working day, and that some rules are necessary to see that they, as well as the patients, are protected from an accidental hepatitis infection. For this reason, patients should follow the policies given to them. You also can take the following precautions at home to protect yourself and your family from becoming Australian antigen positive. 1. Wash dishes and eating utensils thoroughly with hot water and plenty of soap. 2. Wash pans or sheets contaminated by blood, vomit, or diarrhea, etc., thoroughly in hot water and with plenty of soap before using them again. 3. Do not share razors, clippers, and personal articles used by a person who is positive for hepatitis. 4. Practicing personal cleanliness will decrease the chances of spreading hepatitis. 5. If you are positive for hepatitis, tell others who may come in contact with your blood (e.g., dentists, barbers). A positive Australian antigen is no cause for alarm. If you have a positive antigen, or if you have questions about hepatitis, talk to the nurses and your doctor. They will explain more about how important this problem is and the meaning of the tests that are done. page 33
  39. 39. Hepatitis Vaccine There is a vaccine that can help prevent you from getting hepatitis. Your doctor may order this vaccine for you. The vaccine makes your body produce antibodies that kill the hepatitis virus. The vaccine is a total of four injections at different times; one shot at the beginning, one shot after one month, another after two months, and another shot six months from the first. After all the shots are completed, your blood will be checked to see if you have the antibodies. The medicine does not produce antibodies in everyone and if you are a kidney patient, you have a greater chance of not developing antibodies. If you do not develop antibodies, your doctor will order another series of shots for you. If you have more questions about this medicine or if you want to get it, talk with your doctor or nurse. page 34
  40. 40. Vascular Access To start you on dialysis, you need a vascular access to your blood. This is a way of getting your blood from your body, through the artificial kidney, and back into your body. You need to have special surgery to create an access. Your doctor will determine the type of access that is best for you. The most common accesses are listed below. • A-V Fistula • Gortex Graft • Dialysis Catheter Each type of access has advantages and disadvantages. One will probably suit your needs better than the others. You may hear doctors and nurses refer to arteries and veins. Arteries are blood vessels that carry blood from your heart to all parts of your body. Veins are blood vessels that carry blood back to your heart. Veins are usually closer to the skin than arteries are. During dialysis, you will hear the nurses using the words “arterial” and “venous.” An arterial needle in a fistula or graft leads the blood away from the heart just as an artery does. A venous needle takes blood toward the heart, as does a vein. A-V FISTULA A fistula is a direct surgical connection between an artery and a vein that allows blood to flow directly from the artery into the vein. Because of this fast flow of blood, the vein gradually gets larger and becomes stronger and tougher. This allows the nurses to easily insert large needles to remove blood from your body, pass it through the artificial kidney and return it to your body. An ordinary vein would not be strong enough for this, since it would not provide the amount of flow needed for efficient dialysis. A fistula is created by first numbing your skin with a local anesthetic (similar to what the dentist uses). The surgeon makes a small cut (usually about one inch long) over the artery and the vein at the wrist. The surgeon then attaches the vein to the side of the artery and closes the incision. Nothing is actually placed in your arm except the stitches that hold the vein to the side of the artery. page 35
  41. 41. GORTEX GRAFT The Gortex graft is a man-made graft like plastic. The graft can be placed under the skin as a substitute for your own blood vessels. The graft is connected to an artery at one end and to a vein at the other, so that blood flows constantly from the artery into a vein. After the area has healed, needles can be placed in the graft just like in a normal fistula. One advantage of a graft is that it may be used soon after dialysis. The graft can be used after a day or two, but we prefer to let it heal for at least two weeks. DIALYSIS CATHETER When you first start on dialysis you may need to have a catheter placed. This is a temporary access that involves putting a small catheter below your collarbone into the large blood vessel going to your heart. The catheter is stitched in place and stays there until your permanent access is ready to use. After the nurses start using your graft or fistula, the catheter can be removed. Sometimes, these catheters may still clot or kink, or get infected, and it may be necessary to replace the catheter. page 36
  42. 42. Common Questions About Vascular Access 1. After the access is created, what will happen to the rest of my hand? The rest of your hand has plenty of blood supply from other arteries, so nothing will happen to it. Some patients get numb over the thumb. This usually goes away in two to three weeks. 2. Can I use that arm? After the incision heals--usually in 7-10 days--you can use the arm freely. You can do anything with your fistula arm that you could do before the surgery. We suggest that you exercise your fistula arm often. 3. What happens if I cut my arm? If you should cut the fistula vein or the graft, it will bleed more than a normal vein. Putting pressure over the cut will control this bleeding. 4. When can the fistula be used? It can be used after five or six weeks. The vein can sometimes be used within a week, but we prefer letting it develop for a longer period. 5. When can a graft be used? Usually after two to four weeks. 6. What can I do to help the fistula vein develop more rapidly? After the incision heals, you will be given a rubber tourniquet. The vein will develop faster if you put the tourniquet on for three to four minutes several times a day. While the tourniquet is on exercise the arm by squeezing a rubber ball or by lifting a moderately heavy weight. 7. How is the access used? One needle is placed in the vein to remove blood from your body, and a second needle is used to return the blood to your body. The arterial needle takes blood away from your heart. The venous needle returns blood toward your heart. page 37
  43. 43. 8. Does it hurt when the needles are put in? A small amount of local anesthetic can be used to numb the skin where the needle will be placed, so that it’s not very painful. In time, your skin will become less sensitive to the needle sticks. 9. Does it hurt during the time the needles are in? Usually there is no discomfort once the needles are placed, although you must be careful when moving your arm. If you feel pain, tell your nurse or doctor. Changing position will usually stop the pain. 10. How long are the needles left in? They are left in for the length of the dialysis treatment, which varies between three and five hours depending upon your size, the blood flow rate, and a number of other factors. page 38
  44. 44. PART 4 TREATMENT OPTIONS page 39
  45. 45. page 40
  46. 46. Treatment Options Once the doctor tells you it is time to begin dialysis treatment, you may feel overwhelmed with all the things happening to you, and all the decisions that you have to make. You may not know or understand the different options possible to you. Once you start dialysis, you can decide what type of treatment you would like to use. Not all of the treatments are right for everyone. Ask your doctor or nurse to help you pick the one that best suits your medical situations, and takes into account your lifestyle. Your doctor will tell you which treatments you will be able to do. It is up to you to make the choices that will be best for you and your family. YOUR CHOICES MAY INCLUDE: • • Hemodialysis at a clinic • • Home Hemodialysis • • Continuous Ambulatory Peritoneal Dialysis (CAPD) • Continuous Cycling Peritoneal Dialysis (CCPD) • Transplant page 41
  47. 47. Commonly Asked Questions About Hemodialysis 1. Does the artificial kidney machine have an effect on my kidneys? No, it neither helps nor hurts your kidneys. Whether you put out urine or not, your kidneys have failed. Kidney machine treatments will not fix your kidneys. The treatments will not harm them either. 2. Will I always need to use a kidney machine? Kidneys rarely recover after they have deteriorated to the point that dialysis is necessary. The need for the kidney machine is permanent once dialysis has been started. In many cases, a kidney transplant can be performed. If the transplant is successful, dialysis will no longer be needed. 3. Will dialysis make me feel any better? Even though the artificial kidney will not make you well, it will make you feel much better. Many patients actually say they feel normal between treatments, but most do still feel some effects of kidney failure. Some of the effects you might feel are decreased strength and endurance. 4. How does dialysis feel? Is it painful? The treatments are not painful. You may experience some discomfort. The first treatment often causes a headache, and sometimes you may throw up or feel like you might. Some patients have headaches, nausea, and vomiting even during later treatments. These symptoms are less likely if you follow your diet closely and dialyze regularly for the right length of time. page 42
  48. 48. 5. What can I do during a dialysis treatment? You may read, watch television, knit or crochet, play checkers or cards, talk to the nurses and the patients near you, or simply take a nap. Time will pass quicker if you plan some activity during the dialysis treatment. 6. Can I have a normal life while using the kidney machine? Your life may not be perfectly normal, but you can do most of the things you used to do before you developed kidney failure. Reasonable amounts of work are suggested. You should exercise as much as your physical strength will allow. The more you do, the better you will feel. 7. When can I expect to feel better? Improvement may be slow. Most patients find they feel a great deal better after the first three months. Many patients continue to gain strength slowly for up to two years after dialysis is started. 8. How long can I live on an artificial kidney? Patients have lived many years on dialysis. Some of the first patients treated by dialysis in the early 1960s are still living. How long you live depends on how carefully you follow the treatment program prescribed for you, and your overall medical condition. 9. Will I have to dialyze at the center from now on? We encourage all patients to consider home dialysis. Many other patients have dialyzed at home. Dialysis is more convenient at home than in the center, and you can arrange your treatments when you desire. You will also begin to know that you are responsible for your page 43
  49. 49. own treatment. If home training is not possible, you may wish to consider Continuous Ambulatory Peritoneal Dialysis (CAPD). Refer to that section if you are interested. 10. Can I go back to work or school? We encourage patients to return to work or to school, and we’ll make every effort to arrange your dialysis schedule to accommodate your schedule. 11. Can dialysis patients travel? Yes, we can help you set up dialysis in other cities, if you wish. 12. Will I always be under a doctor’s care? Yes, although patients who go on home dialysis can become quite independent and require occasional visits to the doctor. Patients who have a successful transplant eventually become quite independent, also. Learning all about your condition can increase your level of independence, so you can take some responsibility for your own care. 13. Is dialysis dangerous? Dialysis is a complicated procedure. Some risks are involved. Nurses who perform dialysis are trained especially in that area. They know the possible dangers and are careful to avoid them. 14. Is a wearable artificial kidney ready for use? A lot of research has been done on several types of wearable artificial kidneys. When these become available for regular use, they will be assessed for use by our patients. page 44
  50. 50. 15. Will I have cramps while I am on dialysis? Some patients do have cramps during the dialysis treatment. This usually happens when dialysis removes a lot of fluid. To keep from having cramps, avoid taking on large amounts of fluid between treatments by staying within your fluid limits. If you do experience cramps, your nurse can give you something to ease them. High Flux Dialysis & High Efficiency Dialysis High flux dialysis and high efficiency dialysis are fairly new procedures. These types of dialysis are sometimes called shortened dialysis because the dialysis time can be reduced when started on this type of therapy. This type of dialysis works because a very large artificial kidney is used for the treatment. The larger kidney needs a special machine to control the fluid removal so that too much fluid is not taken off. This type of treatment is not right for everyone. Patients who have high flux dialysis must have a good vascular access because very high blood flows are needed. The high blood flows also present another problem. Some patients cannot physically bear rapid blood flows. Patients also must be very good with his or her diet and fluid restriction. Since the dialysis time is shortened, the nurse cannot take off large amounts of fluid safely with this treatment method. How much this reduces dialysis is different from patient to patient. Some patients may be able to run two hours while others require four hours. Dialysis time is very different for each patient. Every patient does not have the same level of kidney failure. Also, your size, level of activity, and diet affect the amount of time patients needs to dialyze. By evaluating you as an individual, your doctor knows how much time you need to dialyze. If high flux or high efficiency dialysis interests you, ask your doctor if you qualify for this type of treatment. page 45
  51. 51. Home Hemodialysis Once you have started on dialysis, you may want to do your own treatment at home. This is an option that offers several advantages to the patient. If you select home hemodialysis, you would use a kidney machine at home in the same way as your treatments are performed at the clinic. This method of dialysis requires that you and a partner (usually a family member) learn how to work the kidney machine. This training takes place over a period of six to eight weeks, and can be done while you are receiving your dialysis treatments. You do not need to purchase your kidney machine. Medicare will help pay for it. Once you take the machine home, you will need to come back to the clinic once a month to have lab work drawn and to be assessed by your doctor. During this monthly visit, you can ask your doctor or home training nurse questions about any problems you might have with the process. ADVANTAGES: • You can do the procedure yourself with the help of a partner or friend. • You use your own machine. • You can dialyze at times that work for you. • If you are eligible for Social Security, Medicare reimbursement begins the day you begin training. • You don’t have to travel to the clinic for treatment. • You can have more independence and control of your life. DISADVANTAGES: • May cause additional family stress. • Requires a partner or friend to help. page 46
  52. 52. The following questions and answers will give you more information regarding home dialysis. 1. Who will dialyze me at home? You dialyze yourself, with help as needed from your partner or friend. You should take responsibility for your own treatment, because this will help you to be more independent. However, we will train both you and a partner or family member, since it is important to have proper assistance while performing home dialysis. 2. Why is the patient expected to be in charge of his or her own treatment? It is important for you to feel independent. It is also important that you understand everything related to your treatment. You have more reason than anyone to do things correctly. It lightens the load on family members, and patients are happier and do better at home if they learn to accept responsibility for their own treatment. 3. Can I learn home dialysis if I am not a nurse or doctor? Yes. Very few of the home dialysis patients have any medical background. Despite this, they learn the method in a short time, and most do quite well at home with help from their medical team. 4. What is the home dialysis training including? The training has two parts: technical and medical. In the technical phase, you learn about the equipment and the artificial kidney. You also learn how to carry out the dialysis safely and efficiently. In the medical part of the training, you learn about any medical treatments you need to stay in good health. The training sessions occur with your dialysis treatments. page 47
  53. 53. 5. How can I be sure that I am ready to go home with a machine? During the training sessions, the nurses will gradually move the responsibility to you and to your partner. Eventually, you will do all work involved in your dialysis, with help from your assistant. You will be allowed to go home with your machine only after you have shown that you can do the technique safely. 6. How do I handle emergency situations at home? In your training, we teach you to avoid emergencies by following the proper and safe technique. However, we also teach you to handle all emergencies that you may encounter. We teach you and your assistant what to do immediately to protect you. After you have stabilized the emergency, you may want to call the clinic or your doctor for additional advice. 7. What happens if the machine breaks down? If you think you are having trouble with your machine, call the Dialysis Clinic and talk with the home dialysis nurse. Usually the machine can be fixed quickly, sometimes with simple directions over the phone. The service person from the company that made your machine may have to repair it. 8. What if my assistant gets sick? If your assistant is sick or is not able to help you, you can come back to the Center on a temporary basis for your dialysis. page 48
  54. 54. 9. Are home dialysis patients also on the transplant waiting list? Yes. Home dialysis patients are on the transplant waiting list if they want a transplant and if their medical condition would allow a transplant. We evaluate a patient’s suitability for a transplant prior to training him or her for home dialysis and will contact the patient when the first suitable kidney is available. One patient is as likely to be called as any other patient, since the decision about who gets a kidney is based on tissue typing, not on where the patient receives dialysis. 10. How can I find out more about home dialysis? Talk with your doctor or nurse about home dialysis. We continually train patients to dialyze at home, and will be happy to discuss this treatment method with you. If you are interested in home training, you may want to talk with the home training nurse. Contact information is listed below. Dialysis Clinic, Inc. 1425 East Third Street Chattanooga, Tennessee 37404 (423) 698-0927 page 49
  55. 55. Continuous Ambulatory Peritoneal Dialysis (CAPD) Continuous Ambulatory Peritoneal Dialysis (CAPD) is one of two treatment methods available for end stage renal disease patients who want to do treatments at home. CAPD is a type of dialysis, or blood cleansing. A liquid mixture is put into the abdominal cavity through a soft plastic tube—a catheter—that has been permanently fixed in the abdomen by a surgeon. CAPD is a seven-day-a- week, 24-hour-a-day procedure and provides continuous dialysis. The dialysis solution is always present in the abdomen. It is a machine-and-needle-free form of dialysis. No assistants or helpers are needed. The dialysis solution “runs into” the abdominal cavity and remains there for four to six hours during the day and eight to twelve hours at night. The time the solution is in your system is called the dwell time. After the “dwell” time, the solution is manually drained from abdomen and fresh solution is again “run” into the abdominal cavity. This procedure is called “exchange” and is performed four times a day. Each exchange usually takes about 30 minutes. The patient choosing CAPD can plan to spend an average of two hours a day performing dialysis, or 14 hours per week. To “run” the solution into the abdominal cavity, one end of a plastic tube is connected to the catheter. This tube is called the “transfer tubing.” There are different kinds of “transfer tubing’s.” Each has a spike or a connector that lets the solution go in for each exchange. The “bag” and the “tube” are made of a soft, flexible plastic. Many of the new tubings allow connections from the “bags” in between exchanges with only a short transfer tubing in place. This is easily hidden under clothing. There are also tools to help patients that may have vision or manual dexterity problems. Extra fluid and waste products are cleaned from the body continuously with CAPD. Because of this, people doing this method of dialysis usually have a different diet than those using hemodialysis. The diet usually lets you eat more fluids, potassium, sodium, and protein. But, each patient is an individual and the dietitian creates a diet specifically for each CAPD patient. page 50
  56. 56. ADVANTAGES: • No machine • No needles • No helper or assistant needed • Rise in hematocrit • Improved taste and appetite • Increase in strength • Better control of blood pressure • More stable blood chemistries • Freedom to travel • Shorter training period than for hemodialysis DISADVANTAGES: • • Infection • • Increase in body weight • • Constipation • • Muscle cramps • • Occasional nausea/vomiting • • Loss of appetite • • Abdominal hernia The greatest disadvantage of CAPD is the risk of infection. Performing each exchange is a sterile procedure. If contamination occurs during the exchange, germs may get into the abdominal page 51
  57. 57. cavity and cause an infection. This infection is called “peritonitis.” The CAPD technique is simple, but must always be kept sterile, or germ-free. Peritonitis can be serious and painful, if it is not treated. Therefore, you should always call your doctor if you see signs of an infection. CAPD has many advantages; but it is not for everyone. The choice to use CAPD is reached only after looking at the individual’s needs and emotional and physical capabilities. For more information, contact: Dialysis Clinic, Inc. (423) 698-0927 page 52
  58. 58. Continuous Cycling Peritoneal Dialysis Continuous Cycling Peritoneal Dialysis (CCPD) is another kind of peritoneal dialysis, or a reversal of CAPD exchanges. CCPD takes the exchanges normally done during the daytime and moves them into the night, while the patient is sleeping. CCPD is another kind of dialysis, or blood cleansing. A solution is put into the abdominal cavity through a soft plastic tube (catheter) that has been permanently fixed in the abdomen by a surgeon. CCPD is also a seven-night-a-week, 24-hour-a-day procedure. Dialysis solution is always present in the abdomen. It is a needle-free form of dialysis. A machine is necessary, but an assistant isn’t needed. The procedure is done with a cycler (machine), which measures and warms the solution, sends the solution to the patient and allows the solution to drain after the completion of the “dwell” time. The cycler also watches each drain cycle to make sure it is drained enough. The cycler has warning alarms to let the patient know if not enough solution is drained. The cycler uses gravity and works quietly, offering the patient a non-threatening home dialysis treatment. The procedure usually takes eight (8) hours each night. Within this eight-hour period, three (3) exchanges are done during the night and the fourth (4) exchange is carried in the abdomen during the day. After finishing dialysis each morning, the patient disconnects at the catheter end. There is a short transfer tubing, but no bag is worn on the body. Extra fluid and waste products are cleaned from the body continuously with CCPD. This allows a more liberal diet, especially more protein, potassium, sodium and fluids. But each patient’s diet will be different, and the dietitian prepares a diet specifically for each CCPD patient. page 53
  59. 59. ADVANTAGES: • No Needles • No Helper • Rise in Hematocrit • Improved Appetite • Better control Blood Pressure • More stable Blood Pressure • Freedom to travel • Shorter Training Period than for Hemodialysis • Fewer Connections than CAPD DISADVANTAGES: • Machine • Infection • Increase in Body Weight • Constipation • Muscle Cramps • Occasional nausea/vomiting • Loss of Appetite • Abdominal Hernia The biggest problem with CCPD is the risk of infection. Performing each dialysis treatment is a sterile procedure. If contamination occurs during first or last dialysis, germs get into the abdominal cavity and can cause an infection. This infection is called “peritonitis.” The CCPD technique is simple, but must always be kept germ-free. page 54
  60. 60. Even though CCPD has many advantages, it is not for everyone. The choice to use CCPD is made only after assessing the individual’s needs and emotional and physical capabilities. Usually, this decision is one in which both the patient and the doctor agree upon and share. Transplantation Kidney transplantation is the process of placing a kidney from another person (donor) into a patient with kidney failure using surgery. The donated kidney can perform all the functions that the patient’s damaged organs are unable to do. The transplanted kidney is put in near the patient’s hipbone rather in the location of the patient’s kidneys, which are higher and more to the side. Sometimes, the patient’s own kidneys have to be removed to control chronic infection or high blood pressure. The patient with a functioning transplant kidney doesn’t need dialysis treatments. Because kidney works more effectively than dialysis, the transplanted patient generally feels better and has more energy. Some patients, whose sexual activity declined during dialysis, find their sexual interest returning. Many limits are ended after transplantation, including food and liquid limits. The transplanted kidney comes from a donor, who may be a living related member of the patient’s family, or from a person who recently died. Needing a donor places some patients in an uncomfortable position. Their need and desire is to be transplanted, but it is hard to ask another person to make the sacrifice of donating a vital organ. Patients who must wait for a kidney from someone who has died are placed on a waiting list. Usually these patients have to wait longer for a kidney because it is harder to find a good “match.” Our kidney transplant programs maintain files of patients wanting to be transplanted. When kidneys from people who have died become available, patients who “match” the donor are called for transplantation. page 55
  61. 61. The kidney transplant surgery is considered major, but low risk surgery. Rejection of the kidney by the body is possible. The patient is treated with drugs to lower the body’s resistance to foreign objects. If rejection does take place, the transplanted kidney is removed, and in most cases the patient returns to dialysis. The drugs that are needed to keep the body from rejecting a transplanted kidney cause some problems. The renal patient may become prone to infections. There may be damage to the liver and skeletal systems. Salt tends to be retained by the body; and the patient may develop ulcers. Some cosmetic effects of drugs may cause the patient difficulties. These changes include fullness of the face, weight gain, acne, facial hair, stretch marks, fat pads on the back, and darkened skin. Not all patients have these problems. Most of the side effects can be made less noticeable through the use of make-up, diet and other means. Most patients prefer the risk of side effects to having to be on the kidney machine. A transplant allows kidney patients the chance to return to a normal lifestyle. Many transplant patients return to work and to their pre-dialysis activities. Although there are risks involved, most patients feel that the rewards are worth the risk. You must weigh your choices and decide what option is best for you. Below is a list of questions frequently asked about transplantation. 1. How long will I have to wait for a kidney transplant? You will receive a kidney as soon as a proper tissue match can be found. In some cases, the wait is only a few weeks or a few months, but in other cases the wait may be one to two years, or even as long as five years. 2. How many kidneys are transplanted? Only one kidney is transplanted, because one good kidney is all you need to be healthy. In this way, two patients can receive transplants when one cadaver donor becomes available. page 56
  62. 62. 3. How long do patients stay in the hospital after a transplant? A transplant patient usually stays in the hospital for two to four weeks. Some may have to stay longer if any problems develop. 4. How long does it usually take to recover from the operation? The transplant patient is usually out of bed in two to three days. The incision usually heals within 10-14 days. The patient will be completely able to walk and move around the hospital before the incision completely heals. 5. Will the transplant make me normal again? A successful transplant will provide you with essentially normal kidney function. However, the extent to which you return to a normal life depends on you. 6. Will I need to use the kidney machine after the transplant? About half of the patients who receive a kidney from someone who has died need dialysis after their transplant while they wait for the kidney to begin working. This period of dialysis can vary from one week to several weeks. Dialysis is only rarely needed for patients who receive a kidney from a live donor. 7. Will I be on a special diet? If the transplant is a success, you will be on a special diet that will give you large amounts of protein to prevent muscle wasting from the medicine you will have to take. The diet will be limited in carbohydrates and calories and will usually be limited in salt. page 57
  63. 63. 8. Will I be able to drink as much as I want? If the transplant is successful, you will generally be able to drink all the water you want. 9. Will I have to take medicines? Yes, you will have to take medicines to prevent rejection as long as you have your transplant. 10. What is rejection? Rejection is when your body tries to get rid of any foreign tissue. Almost all transplanted kidneys go through some rejection attempts, but usually they can be controlled with medication. 11. Can more than one transplant be done? Yes, if the first transplant fails, the kidney will be taken out and you will return to dialysis. After you recover from that operation, you will be placed on the active transplant list again if you wish, and a repeat transplant will be done. Some patients have had three or four transplants before they receive one that is a success. 12. How long will the transplanted kidney last? There is no known limit to how long a transplanted kidney will last. Many kidneys, both from live donors and from cadaver donors, have lasted ten years or more and are still working normally. 13. What is a live-related transplant? A live-related transplant is a kidney transplant in which the kidney is taken from a member of your immediate family, or a relative. This could be a parent, brother or sister, or child. page 58
  64. 64. 14. Are there advantages to receiving a live donor kidney? Yes, the two main advantages are that the success rate is better (because the kidney is more nearly like your own tissues than an unrelated kidney would be), and the transplant can be done immediately. 15. If I take a kidney from a relative, how will that affect my relative? The donor’s health should not change. After recovery from surgery, he or she should be able to return to work or school and be as strong as ever. The kidney that is left will do the same work that two kidneys did. 16. How long will the donor be in the hospital? Usually 5 to 7 days. 17. What about the costs of live donor transplantation? Medicare covers most costs for both the patient and donor. The few patients not eligible for Medicare should discuss questions about costs with their social worker. 18. How can I learn more about transplants? Ask your doctor or nurse. page 59
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  66. 66. PART 5 SOCIAL SERVICES page 61
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