ESRD Network # 12 Patient NewsletterProviding kidney patients and their families information on diet,

health, and kidney disease.Volume 2. Winter 2002 Issue 4.

If you decide that transplantation may be an option you would like to consider, the following information was designed to prepare you for the road that lies ahead. We encourage you to discuss additional questions with your dialysis staff or the staff at a transplant center.

Damage from a number of diseases affects the kidney’s ability to rid your body of waste, toxins, fluid as well as the regulation of blood cell formation and electrolyte balances. As a result, kidney transplantation could be an option.

Pre-transplant tests in addition to a health screening are performed to assist the transplant team in discovering potential difficulties thus improving the survival of the transplant for you, the patient. Some of the tests you may expect are:

Physical Exam – The doctor can determine the patient’s overall condition.

Chest X-Ray – Allows the doctor to assess the condition of the patient’s lungs and health of the respiratory tract.

Medical and Surgical History – allows the doctor to have information on previous diseases and can determine if any additional tests need to be performed.

Electrocardiog ram – Sometimes called and EKG or ECG. This test evaluates how well the heart functions and can show heart disease that may not have been suspected.

Ultrasound – Evaluates the condition of the vessels where the transplanted kidney will be placed.

Blood Tests – Similar to the monthly labs run at your dialysis clinic. Additionally, these tests may also evaluate for any immune problems that could lead to rejection down the line.

Blood Typing – Your blood type is either A, B, AB or O. This test determines which type. Transplant recipients do not have to have the same blood type, however their types must be compatible.

Pulmonary Function Tests – The patient is asked to breathe into a tube and a device measures the amount of oxygen the blood can carry and how well your lungs are working.

Upper and Lower Gastrointestinal Series – Upper and Lower GI – This test is usually done under mild sedation. In an upper GI, a scope is passed down your throat to evaluate the upper intestines, stomach and esophagus. A lower GI evaluates the colon and is also done under mild sedation with a

scope that is placed in the rectum. Both tests could be used to make sure you are disease free.

Renal function studies – They may request a 24-hour urine to determine current kidney function.

Tissue Typing – This is used to find a matching kidney. It looks at the “special markers” – genetic markers on white blood cells – your “tissue type”.

Panel Reactive Antibody – (PRA) – A blood test that measures the immune response to foreign tissue, transfusions, pregnancy or previous transplants. Your immune system may be active from illness, transfusions or infections. The optimal on this test would be a 0% activity.

Viral Testing – A blood test that evaluates if you have been exposed to viruses like Hepatitis, HIV, Cytomegalovirus (CMV) and Epstein-Barr (EBV).

Mammogram – Typically women only, an x-ray of a woman’s breast that can evaluate for possible breast cancer.

Pap Smear – Women only, cells from your cervix are looked at under a microscope and examined for possible cancer.

Echocardiogram – An ultrasound of the heart to look for any abnormalities.

Dental Evaluations – All teeth and gums must be healthy before you are added to the transplant list. Any cavities must be filled. You will need to have regular dental check-ups while

you await transplantation. If you are on dialysis, check with your dialysis team before any dental appointment. The dialysis team may want you to take antibiotics before the appointment to help prevent any infections.

Cross match Testing – When a donor kidney is available, your blood is mixed with the donor’s blood. If there is no reaction, you are compatible with the donor.

Other Tests – The transplant doctor may want additional tests, for example, if you are diabetic, they may request additional tests on your heart.

AIDS / HIV – You will be tested at one of your clinic appointments.

The transplant team is similar to the dialysis team at your unit. The team members typically are:

Transplant Surgeon – performs the actual transplantation surgery and monitors the patient’s medication before, during, and after surgery. He or she will assess the quality of the donor's kidney before surgery, and monitor the patient's general and kidney status following transplantation. He or she will check you incision to make sure it is healing properly.

. Transplant Physician (Nephrologist) - monitors all non-

surgical aspects of patient care. You may see this doctor often. The transplant physician will perform examinations, check test results, and adjust medication as needed. Do not be shy in asking questions and alerting this physician regarding changes in the way you feel, no matter how insignificant it may seem.

Transplant Coordinator - usually a registered nurse, has three key responsibilities:

First – Coordination of all the events leading up to and following surgery. These may include scheduling pre-transplant testing, locating donor kidney, testing for donor compatibility, contacting the patient once a kidney has been found, and making sure that the patient has proper follow-up care.

Second - Teach the patient how to take care of himself before and after transplantation, including how to take medication and when to return to the transplant center for follow-up visits. They can put you in touch with community services that can make life easier for you and your family.

Third – Arranges all communications between patients, hospital, clinics and doctors.

Staff Nurse – helps coordinate the activities of the transplant patient’s other caregivers in addition to caring for you during your hospital stay. This nurse assists the other members of

your transplant team by communicating with them on your care and preparation for discharge.

Physical Therapist – sets the patient’s exercise limits after surgery and tells you when it is safe to increase your activity. Exercise improves your circulation, can help avoid weight gains and builds strength.

Financial Coordinator – contacts your insurance company to verify transplant and medication coverage. Assists in the financial planning for the transplant. NOTE - Not every transplant team has this coordinator.

Dietitian – follows your doctor’s orders and creates a special diet plan that helps you stay healthy, prevents excess weight gain and speeds the healing process.

Social Worker – can provide you with services in the community and people that can assist with your recovery after leaving the hospital. Some of the resources they can help with would be assistance at home, transportation to and from doctor appointments, assists with your mental and social needs as well as those needs from your family members and may help coordinate medical financial planning and vocational resources.

Psychologist – provides emotional support for you and your family through the transplant process. You and your family may find it helpful to discuss your feelings and ask questions about how the transplant can affect your lives.

Pharmacist – medication will become a routine part of your life after transplantation. The pharmacist can provide education on your medications and give advice about drugs,

most importantly about the drugs you will take to help prevent your body from rejecting your new kidney.

Days and weeks may pass while you and the transplant team wait for UNOS – (United Network of Organ Sharing) to locate the right kidney for you. During your wait you can prepare and take positive steps to deal with the stress of waiting.

The Telephone – Your New Best Friend – When a donor kidney is available, the transplant coordinator will call you to get ready. The call could come during any part of the day. It is very important that the transplant team can reach you wherever you are. Provide the transplant team with your cell phone number or pager number and always inform them if the numbers change. Provide the transplant team phone numbers of friends and family members so that when your kidney is available they can contact you immediately. When the transplant coordinator calls you, everything may seem like a blur. The coordinator will inform you when to go to the transplant center. Do not delay; there is a time limit once a kidney becomes available.

Make a List and Check it Twice – as soon as your name is added to the transplant waiting list, it would be wise to make a list of things you may want to have with you while in the hospital after surgery. Also consider making a list of people you would like to contact after surgery. Consider packing a bag and leaving it in an easy to find area. Ask a friend or relative to help you remember some last minute items. The excitement of the call can send your mind racing and you could forget some of the items you may want.

Designated Drivers – If the transplant center is close, consider designating a driver – if possible. If you decide not to designate a driver, remember slow and easy wins the race – the transplant team wants you to arrive at the center uninjured. If the transplant center is farther away, the coordinator can assist you and your family with transportation arrangements. If you choose to make your own arrangements and flight travel is involved, consider calling the airlines in advance to retrieve updates on flights and routes every month. If possible, a direct flight is the best option. It would be wise to have a backup plan in case your flight is delayed. Ask family and friends to stay within driving distance of the transplant center.

Waiting for the phone call that a match has been located can possibly send you into a

daze of excitement, stress and anxiety. The following are tips to assist you in coping

with the stress you may feel.

Eat right, take your medications and exercise according to the transplant teams plans.

Don’t place your life on hold; keep social and work engagements. Relax to the best of your ability.

Share your feelings if you begin to feel depressed or have other concerns. The transplant team is willing to assist you and help alleviate your fears. The Social Worker can locate

support groups in your area in addition to listening to your concerns.

Enjoy a hobby to the fullest. Not only can it be enjoyable, but it can also absorb energy, take your mind off of the waiting, and help you relax.

Laughter is the best medicine. Spend time with family and friends – good company can take your mind off the wait.

Learn and practice relaxation techniques, such as reading, yoga or music.

When the call comes, remember to bring a list of your current medications, a list of your allergies, and your health insurance

information.

When your transplant team calls, stop eating and drinking immediately. The transplant

team wants you to have an empty stomach for surgery.

Once at the Hospital… - you will be admitted. After admission, you will be examined, have more blood work taken, a chest x-ray, an EKG, dialysis and possibly other tests. Unfortunately, surgery must be postponed in some cases.

You Could be Sent Back Home If… o An infection has developed or any other medical

problem that could interfere with your surgery and recovery.

o The donor kidney does not function well or there are signs of damage.

o If the cross match testing between you and the donor shows a reaction, which means you are not compatible with that donor.

If surgery is postponed, this is only a temporary setback. The search for another

kidney will continue.

Before surgery, you may receive an enema or a laxative to clean out your intestines and prevent constipation after surgery. Hair from the chest and abdomen may be shaved to prevent infection, and an intravenous (IV) line could be inserted in the arm or just under the collarbone to give medication and prevent dehydration. You may also be given a sedative to help you relax and feel sleepy before going to the operating room.

IMPORTANT:Because transplantation is a major surgical procedure, you may need a transfusion. Today, all blood is screened very carefully; the likelihood of getting a disease is very small. Any concerns that you have regarding the source of the blood can be relayed to the transplant team during the waiting period, before getting to the hospital. Most hospitals offer the option of "auto transfusion" – You may donate your own blood before surgery. Your blood is stored and then used during transplantation. Each facility may vary, some do not offer this option. Please check with the transplant team to see if this is an option at their facility.

You will be given general anesthesia during the surgery. Once you are asleep, the transplant surgeon will make an incision on the right or left side of your lower abdomen just above the groin.

The surgical team places the donor kidney into the abdomen and connects the kidney's blood vessels to your iliac artery and vein. The surgeons will then connect the ureter to the bladder. A small drain, called a Jackson Pratt, may be placed into the abdominal cavity to drain any excess fluid. Do not open this drain yourself. The nursing staff at the hospital will drain it and teach you how to drain it, if necessary. Opening this drain without assistance can lead to an infection in your abdomen, new kidney or throughout your body. NOTE – Not all transplant centers use drains after surgery.

After surgery, you will wake up in the intensive care unit (ICU) or the recovery room after the anesthesia wears off. You can expect to experience some or all of the following:

Some pain and discomfort, the pain medication will help relieve this.

Someone will ask you to turn, cough and deep breathe periodically. This is done to help keep your lungs clear and prevent pneumonia. If it hurts to cough, ask someone to assist you in supporting your abdomen.

You will have an IV line in your arm or neck under your collarbone, which will be used to give fluids and medication for the first few days after your surgery.

For several days after surgery, you will have a catheter in your bladder to drain urine. The catheter may feel uncomfortable and you may feel like you need to urinate constantly, this is only temporary. The catheter is usually removed several days after surgery.

During surgery, one drain may be placed in or near the incision. This drain will be removed 5 to 10 days after surgery. (This is the Jackson Pratt drained discussed on the previous page).

You may still need dialysis to help clear excess fluid and toxins in your body until the kidney recovers from the transplant process.

The length of a hospital stay will depend on your progress. You are encouraged to talk to someone on your transplant team if you are uneasy or uncomfortable.

After your medical condition has stabilized after surgery, you may be transferred from the ICU to the acute care unit. During your stay on this unit, laboratory studies, medications, nutritional status and exercise tolerance are monitored. As soon as you are able, discharge instructions will begin to prepare you for going home.

Clinic Visits – When you leave the hospital, you will receive a schedule of follow-up clinic visits for lab tests and checkups. Make sure you do not miss these appointments; they are intended to track your progress and detect any complications as soon as possible.

Follow-up visits – On the day you go for a follow-up visit, remember to bring your medication list and either this handbook, or the one the transplant center provided. You will be given specific instructions for routine lab work or special tests that you may need.

Feel free to use this space to list any special discharge questions you want to ask, instructions that you may have been given, information on medications you will now take or questions for follow-up clinic appointments.

Lab Tests - A lab test, similar to your monthly labs from dialysis, monitors your blood count, kidney function, electrolytes and medication levels in your blood. Other tests may be ordered in addition to this.

Tests for Blood Count:

o WBC – white blood cell count – tells if your white blood cells have increased (usually a sign of infection) or decreased (indicating a lower defense against infection and/or a viral infection).

o HCT – hematocrit – measures the percentage of red blood cells in the blood. Red blood cells carry oxygen to all parts of the body. When your HCT is low, you may feel tired or have little energy.

o HGB – hemoglobin – measures the oxygen carrying capacity in your blood – some transplant clinics use this instead of hematocrit.

o PLT - platelets – cells in your bloodthat clot when the body is injured. Low platelet levels can cause someone to bruise easily and bleed longer when injured.

Test for Kidney Function:

o Creatinine and BUN tell how well the kidney is working by measuring levels of creatinine and blood urea nitrogen, waste products normally removed from the blood by your kidneys.

o When the Creatinine level rises, the cause could be rejection, infection, a side effect of the medication, or a blockage of the urine being excreted.

Tests for Electrolytes - (dissolved minerals): o Ca - calcium – a mineral necessary for strong bones and

teeth, blood clotting and heart and nerve function.

o PO4 – phosphorus – a mineral that works closely with calcium to strengthen bones.

o Mg – magnesium – a mineral necessary for normal functioning of muscles and for blood clotting.

o K – potassium – a mineral needed for normal heart and muscle function.

o Na - sodium – a mineral that helps maintain the balance

of salt and water in the body.

o CO2 - bicarbonate – a mineral that helps maintain acid balance in the body.

Other Blood Tests:

o Glu measures glucose, levels of sugar in the blood; some medications may produce a diabetes-like condition in which blood-sugar levels are too high.

o Drug levels measure PROGRAF® or SANDIMMUME®

in the blood. PROGRAF or SANDIMMUNE blood levels must be checked regularly to avoid levels that are too high or too low. High levels could lead to toxicity or over-immunosuppression, and low levels may lead to rejection.

NOTE: The desired level (normal range) will differ for each person, depending on the combination of immunosuppressive medications and the length of

time since the transplant.

ADDITIONAL TESTS AND PROCEDURES:

The transplant team may perform one or more of the following tests and procedures to monitor a patient's

transplant:

Ultrasound - This test is performed to make sure all the main blood vessels leading to the kidney are functioning normally. This test is also used to check for collections of fluid, such as blood. The procedure consists of placing a cool gel on the patient's abdomen, over which a wand (transducer) is moved to transmit sound waves. These are converted into images of the kidney and projected onto a television screen.

Kidney biopsy (test sample) - This test is usually performed to check for rejection, or other possible problems. This may be done in the hospital or in the outpatient/short-stay unit. The patient will receive special instructions regarding the procedure. Before the procedure, the patient will receive a numbing injection (local anesthetic) on the side of your abdomen where the transplanted kidney is located. Then a special needle will be inserted to withdraw a small sample of kidney tissue that will be examined with a microscope.

Computerized tomography (CT) scan - This is a type of X ray that allows the physician to view the patient's kidney from many different angles to detect infections, fluid collections, or other problems. The procedure requires that the patient drink a liquid that outlines his stomach and intestines and makes his kidney more visible; then he lies flat for 1 hour while the machine takes X rays around him.

Magnetic resonance imaging (MRI) - This is another type of test that produces an image. Somewhat like a CT scan, it also allows a patient's kidney to be viewed from different angles and in three-dimensional images. An MRI shows soft tissues, such as the kidney, more clearly than a CT scan does.

Tests I Have Completed

Tests I Need to Complete

After you are discharged from the hospital, the transplant team may ask you to monitor the following:

Temperature – Check and record your temperature, usually once or twice a day and any time you feel chilled, hot, achy or ill. This could be the first sign of infection. If your temperature is higher than normal for you, notify your transplant coordinator immediately! This is considered an emergency – an increased temperature can be a sign of rejection or infection.

Pulse – If you are taking medication that affects your heart rate, the transplant coordinator will teach you how to check your pulse. If you have chest pain or difficulty breathing, call 911 and go to the emergency room. It may not be safe for you to drive yourself.

Blood Pressure – If the transplant team requests you monitor your blood pressure, the transplant coordinator will show you how to do so. The top number is systolic and it is the first sound heard, the bottom number is diastolic and it is the last sound heard. It is important for you to know your normal blood pressure, normal changes in your blood pressure and when your blood pressure is high enough to be a concern.

Weight – Try to weigh yourself every day – at about the same time. Any bathroom scale will work. If you gain more than 2 pounds in a day, you could be retaining fluid – notify the transplant coordinator immediately.

WARNING:DO NOT USE TYLENOL® (Acetaminophen), ADVIL® (Ibuprofen), ALEVE® (Naproxen Sodium), Bayer

Aspirin® (aspirin, acetylsalicylic acid), NSAIDS – (Non-Steroidal Anti-Inflammatory Drugs), or other such products except under the direction of a physician, as these drugs may cause further symptoms or mask the symptoms you currently are experiencing. Some transplant clinics allow patients to take Tylenol® without contacting the transplant office first.*

You are encouraged to resume your regular activities after you recover. Keep in mind the following changes or new responsibilities:

Skin and Hair – You may not need any special skin care unless you develop acne or dry skin. For more information on acne and skin, see page 19. Generally, you can shower or bathe as often as necessary to keep your skin clean. Most soap is appropriate.

Sexual Activity – You may resume sexual activity as soon as you feel well enough. How quickly you feel ready will depend largely on your recovery progress. Consider discussing this during one of your clinic visits. Transplantation may affect sexual functioning. Additionally, certain medications can run interference with sexual functioning. Sexual activity does not cause organ rejection or infection. However, if you are sexually active and have more than one partner, it is extremely important to use condoms to reduce the risk of sexually transmitted diseases such as HIV, chlamydia, syphilis, herpes, hepatitis or gonorrhea.

Smoking - The Surgeon General has determined that smoking can be harmful to your health. If you are a smoker and the transplant team did not require you to stop smoking before transplantation, you may wish to join a support group for smoking cessation. You can check in the Yellow Pages for the American Heart Association, American Lung Association or the American Cancer Society to find a local group.

Vacations and Travel – If you are planning a trip to a foreign country that requires immunization for smallpox, measles, German measles, or any other vaccine containing a live virus, ask your transplant team to send a letter to your local passport bureau stating that you cannot receive these vaccines. Because you are not immunized, however, travel to these countries may not be safe.

Dental Care – PRECAUTIONS FOR DENTAL CARE - Before your transplant, you had a dental consultation to ensure that all dental work was done before your surgery. If you have dental pain, see your dentist immediately. Be sure to check with your transplant team before having any dental work done – including cleanings and polishing. Your transplant team will inform you if you need to take antibiotics before going to the dentist. Some of the anti-rejection drugs you may take can cause your gums to overgrow – called hyperplasia. The transplant team encourages you to see your dentist at least every 6 months, if not more often.

Pregnancy & Fatherhood - There have been a number of successful pregnancies among women who have had kidney transplants, although pregnancy may have special risks for both

you and the baby. Women should avoid pregnancy for at least 1 year following transplant surgery. Men should also consider discussing this with the transplant team to evaluate the risks associated with the medication. Risks related to birth control should be discussed with the transplant team. After 1 year, the decision to have children takes other factors into account. Consider discussing this with the transplant team at a clinic visit.

Exercise - After transplant surgery, exercise is critical to your mental health and physical well-being. Physical activity is also very important in helping decrease the effects of prednisone, which causes muscle weakness. A daily exercise routine is essential to avoiding the muscle and total-body weakness that often occurs after a long illness or period of recovery. The program should be a progressive one where you build or increase your level of exercise. By exercising progressively, you can obtain the full benefit of the exercise without harming your body. Remember to check with your transplant team before beginning any exercise routine. They will advise you regarding a routine that would be best suited for you.

WARNING:

If you feel any of the following symptoms, stop or delay exercise until you speak with your

physician:

Pain or pressure in the chest, neck, or jaw. Excessive fatigue that is not related to lack of sleep, unusual shortness of breath, dizziness or light-headedness during or after exercise or persistent, rapid or irregular heart beat - new since your transplant, during or after exercise.

Diet and Nutrition - Eating properly is an important part of your recovery process. A dietitian can help in developing an eating plan that provides a balanced diet to meet your needs. The number of calories you require is based on whether you need to gain, maintain, or lose weight and on you activity level.

Foods to Consider Including – Fruits, vegetables, whole grain breads and cereals, low-fat dairy products or other calcium sources, lean meat, fish and poultry. Using salt may encourage fluid retention. Consider consulting with the transplant dietitian regarding the use of salt, sugar and fat in your diet.

Alcoholic Beverages – You may be taking medications such as PROFRAF®, SANDIMMUNE®, IMURAN®, or BACTRIM®. These medications are broken down by the liver, as is alcohol. If combined they could harm the liver and potentially lead to abnormal blood levels of these medications. This can damage the function of your new kidney.

My Permitted Exercise Routine:

Keep your transplant team informed of changes in your current medications or of new medications. Some medications can increase or decrease the level of anti-rejection medications in your blood, making you more

While primary concerns involve infection and rejection, your primary physician can handle other problems, such as colds, the flu, minor infections or adjustment of other medications. It is important that you take precautions and learn to recognize signs of infection or rejection. If you experience any of the following, contact your transplant team immediately!

A fever lasting more than 2 days or a fever over 101.5º.

Shortness of breath

A cough with yellow or green mucus

A dry cough lasting for more than 1 week

Prolonged nausea, vomiting, or diarrhea

An inability to tolerate prescribed medication

A rash or other skin changes

Vaginal discharge or itching

Burning discomfort with urination

Exposure to mumps, measles, chicken pox, or shingles

Unusual weakness or light-headedness

Emergency-room treatment or hospitalization

Pain, redness, tenderness or swelling at the incision site

Fluid retention/weight gain (2 pounds in 24 hours)

Decrease in urine output

Pain during urination

Blood in the urine

Strong odor to the urine Feeling

urgent need to

urinate or need to urinate frequently

Acne - Prednisone can cause acne on the face, chest, shoulders, or back. Cyclosporine can make the skin oilier. If acne develops, wash the area three times per day with a mild soap, scrubbing gently with a clean, wet washcloth. Rinse the soap completely from the skin to leave the pores open and clean.

Ways to control acne:

o Keep hands away from your face and avoid rubbing the affected area. To avoid infections, do not pick or touch the acne.

o Do not use cosmetics.

o Avoid the use of medicated hypoallergenic cosmetics intended to cover acne. Wearing makeup will prevent acne from going away.

o Do not rub or scrub the skin vigorously. This can irritate the skin.

o Avoid soaps that contain creams and oils, because they will aggravate acne.

o Do not use lotions for dry skin.

o If the skin becomes very dry, stop washing those areas temporarily so the skin can recover its natural moistness.

o Do not use RETIN-A® (tretinoin cream) on the skin without consulting a physician, because it will increase the sun sensitivity caused by prednisone.

WARNING:Remember that a dermatologist must treat severe or

infected acne. If acne remains a problem, a member of the transplant team should be contacted for advice.

Dry skin care - For problems with dry skin, use a mild soap and apply body lotion after bathing Cuts and scratches - Wash minor cuts and scratches daily with soap and water. For treatment of large cuts, contact a physician immediately. Skin growths - The transplant team should be notified if the patient discovers any unusual skin growths, rash, or discoloration.

Hair care - Prednisone will probably affect the condition of hair. Permanent hair dyes, tints, wave lotions, and bleach may cause hair to become brittle and to break. It is recommended that the patient waits until the prednisone dosage is lower than 10 mg per day before having a permanent or coloring the hair. The patient's hairdresser should be advised that the patient is taking prednisone and to use a good conditioner on the patient's hair.

Unwanted hair growth - If facial hair increases, use a hair-

removal cream (depilatory). Be sure to follow directions carefully to avoid eye or lip irritation. An alternative is to bleach extra hair growth with a 50% peroxide solution. The patient might consider waxing or electrolysis to remove extra hair. Even if hair growth is excessive, do not alter medication. Contact the transplant team.

Sun exposure - Transplant patients have an increased chance of developing skin and lip cancers. Since the risk increases with time, the patient must always protect his skin from the ultraviolet rays of the sun that cause skin cancers.

o Avoid midday (10 am to 3 pm sun, when ultraviolet rays are strongest.

o Wear a hat, long sleeves, and slacks when outdoors unless using a sunscreen.

More information on specific infections is discussed later in this pamphlet.

o Use a sunscreen lotion with sun protective factors (SPF) rated at least 15.

o Use a sunscreen lotion and lip balm every day (rain or shine) and apply to exposed areas, especially face, neck, and hands.

NOTE:Remember that sunscreen lotions wash off.

Reapply the lotion as needed, especially after swimming.

The immunosuppressive medications you are taking interfere with your natural immune system. Because of this, it is extremely important that you consciously protect yourself. Below are a few precautions to consider in assisting the prevention of an infection. Wash your hands often.

Keep your hands away from face and mouth.

Stay away from people with colds or other infections.

Ask friends to visit only when they are well.

If you have a wound and must change the dressing yourself, wash your hands before and after.

Wash your hands after coughing or sneezing, and throw tissues into the trash immediately.

If someone in your family becomes ill with a cold of flu, have that family member follow normal precautions (use separate drinking glasses, covering their mouths when coughing, etc.)

Avoid working in the soil for 6 months after the transplant. Afterwards, wear gloves. *Some transplant clinics do not limit this activity.

Avoid handling animal waste and avoid contact with animals that roam outside. Do not clean birdcages, fish or turtle tanks or change cat litter. The cat litter box should be covered and taken out of your home before it is changed.

Avoid vaccines that consist of live viruses, such as Sabin - oral polio, measles, mumps, German measles, yellow fever, or smallpox. The live virus can cause infections. If you or any family member plans to receive any vaccinations, notify your transplant team.

Take good care of your teeth by brushing two times a day and seeing the dentist twice a year for cleaning and checkup.

SPECIAL WARNING FOR PARENTS OF CHILDREN THAT HAVE BEEN TRANSPLANTED

Ask the school nurse or other official to notify you immediately of any communicable diseases (for example,

measles, chicken pox) that may be circulating in your school.

Communication and cooperation between you, your transplant team, primary physician, pharmacist, and dentist is vital to your well-being. Having a transplanted kidney and taking the medications needed to prevent rejection put you at risk for a number of complications. It is important to follow the instructions that will help prevent or lessen complications.

One of your most important jobs is to make certain that all members of your local healthcare team - family physician, dentist, local pharmacist, and any other healthcare professionals you see - are aware of your transplant, the medications you take each day, and the precautions you must follow to stay healthy. Each of your local healthcare providers can be given the telephone number of your transplant team. Ask that they contact the transplant center for specific information.

Anxiety and Depression A serious procedure such as the one you just experienced can create many personal and family stresses. It is not uncommon for transplant patients to experience anxiety and perhaps depression following their surgery, hospital confinement, and return home. To help you adjust to life at home and an eventual return to work or school, counseling services are available. Consult with the transplant coordinator or social worker for information regarding services available to help resolve stress and anxiety.

Medication Guidelines You are responsible for taking the medications that have been prescribed. Speak with your physician, pharmacist, transplant nurse, and/or coordinator to understand fully:

The name and purpose of each medication

When to take each medication

How to take each medication

How long to continue taking each medication

Principal side effects of each medication

What to do if you forgets to take a dose

When to order more medication so it doesn't run out

How to order or obtain medications

What to avoid while taking medications

At home, while recovering you will continue taking most of the medicines you began taking in the hospital after the transplant surgery, especially the anti-rejection medications. Your immune system recognizes the new kidney as foreign and will try to reject it. Therefore, your immune system must be controlled with immunosuppressive medications. You probably will have to take one or more of these drugs for the rest of your life, in addition to other medications.

Before taking medications:

o Ask the nurse, coordinator, or pharmacist to help in selecting the best times to take medications.

o Try to take each medication at the same time every day.

o Follow a written schedule.

o DO NOT cut or crush a tablet unless advised to do so.

General Guidelines for Storing Your Medications o Keep all of your medications in the original container.

o Make sure the cap is on tightly.

o Store the medication containers in a cool (<80° F), dry place away from direct sunlight.

o Do not store medications in the bathroom - moisture can cause medications to lose their strength.

o Keep all medications away from children.

o Do not store medications in your car.

o Ask your nurse, coordinator, or pharmacist to help you pick the best times to take your medications.

o Take each medication at the same time every day.

o Follow a written schedule.

o DO NOT cut or crush a pill unless you are told to do so. REMINDER:

Never stop taking medication or change the dosage without your physician's approval.

Important Medication Tips :

Take Prograf® on an empty stomach.

Take your Prograf®, Neoral® or Cyclosporine doses 12 hours apart.

Take Prograf®, Neoral®, or Cyclosporine AFTER the lab draws blood for a level.

Bring the medication with you and take it after your blood has been drawn.

Bring all of your medications to your first clinic appointment.

CellCept® (Mycophenolate) – ImmunosuppresionFights rejection by decreasing the number of white blood cells the immune system produces. Best taken on an empty stomach, twice daily. Report any fever, rash, severe diarrhea, chills, sore throat and fatigue since infection can occur. Do not break, crush or open capsules. Do not chew tablets. Do not expose medicine to light. Avoid crowds to reduce the risk of infection.

How Supplied – Capsules – 250mg blue and brown; Tablets – 500mg lavender.

Possible Side effects: Can include - diarrhea, leukopenia-{a decrease in the number of white blood cells which can increase the chance of infection}, sepsis-{a condition associated with a bacterial infection of the blood}, vomiting and a decreased resistance to certain types of infections and lymphoma-{cancer of the lymph glands}. Patients receiving CellCept® should be monitored for neutropenia-{a lower than expected decrease in the number of white blood cells}. Immediately report to your doctor any evidence of infection (for example, fever, chills, sore throat, cough, unexplained bruising or bleeding).

Sandimmune®,Neoral®,SangCya®(Cyclosporine) - Immunosuppression

Fights rejection by inhibiting T-lymphocytes – a type of white blood cell. Can be taken with food or liquid form can be mixed

into chocolate milk, orange juice or milk. Usually taken twice a day – 12 hours apart. Report any fever, chills, sore throat, fatigue – since serious infections can occur. Do not break crush or chew caps. Report signs of bleeding gums, tremors and increased blood pressure to the transplant team. Use contraceptive measures during treatment. Do not expose to direct sunlight.

How Supplied – Capsules – 25mg, 50mg, and 100mg; liquid – 100mg per ml.

Additional Considerations: Can be mixed in room-temperature liquids. Use a glass or hard plastic container for mixing along with a metal spoon. Do not use a styrofoam cup. Drug is usually given with corticosteroids – {such as prednisone}. Expect frequent lab tests in the first few months to monitor effectiveness of drug. When lab is scheduled check with the transplant team to see if you should take this medication before your test.

Additional Considerations - Sandimmune®Store SANDIMMUNE capsules below 77 º F; store liquid below 86º F. Do not leave SANDIMMUNE in the car or store it in a refrigerator or a bathroom medicine cabinet or exposed to direct light. Appropriate places to store this drug include the kitchen or the bedroom - away from heat, cold, moisture, and children. An open bottle of SANDIMMUNE is good for 2 months. The capsule should not be removed from the wrapper until it is ready to be used. SANDIMMUNE® interacts with many commonly used medications. Check with the transplant team before starting any new medications - including over the counter drugs.

Possible Side effects: Can include - headaches, tremor, abnormal kidney function, high blood pressure, high potassium levels, excess hair growth, swelling or overgrowth of the gums, and sleep disturbances.

ProGraf® (Tacrolimus) – Immunosuppresion

PROGRAF is prescribed to prevent or treat organ rejection in people who have received liver or kidney transplants. It fights rejection similar to cyclosporine – {see previous drug} by inhibiting T-lymphocytes. It is used for long-term (perhaps lifetime) immunosuppression. The transplant team may decide to give you PROGRAF® instead of cyclosporine, or vice versa, because of side effects or rejection. If this occurs, follow the instructions of the transplant team. Report any fever, rash, severe diarrhea, chills, sore throat, fatigue – serious infections can occur. Should be taken 1 hour before meals or 2 hours after meals. Report signs of clay-colored stools and cramping. Usually taken twice a day – 12 hours apart. Expect frequent lab tests until the transplant team determines the correct dosage and blood levels for you. Avoid crowds to reduce the risk for possible infection.

How Supplied – Capsules – 1mg and 5mg

Additional Considerations: Check with your transplant team to determine if PROGRAF® should be taken before lab tests. Store at room temperature. PROGRAF® can interfere with common medications – including over the counter medications. Check with your transplant team before using any new drugs.

Possible Side effects: Can include - headaches, nausea, diarrhea, tremors, high blood sugar, high potassium levels, decreased magnesium levels, abnormal kidney function, hair loss, sleep disturbances, and numbness and tingling of hands or feet.

Deltasone® (Prednisone) – CorticosteroidDELTASONE® is a corticosteroid that helps prevent and treat rejection of transplanted organs. It may be used for long-term (perhaps lifetime) immunosuppression or, in higher doses, for treatment of rejection. If prescribed by your transplant doctor once a day, take it in the am. Best to take with food to decrease upset stomach. Place a card in your wallet or purse instructing others that you are a steroid user. Do not stop taking the drug

abruptly, adrenal crisis can result which can be potentially life threatening. Can interfere with some over the counter drugs. Check with your transplant team before taking any new medications.

How Supplied – Capsules – many different strengths; liquid – 5mg per ml

Additional Considerations: Do not take within 1 hour of taking antacids such as TUMS®, ROLAIDS®, MYLANTA®, PEPTO-BISMAL®, etc. These drugs can decrease the absorption or effectiveness of the corticosteroid. Report joint pain, difficulty breathing, weakness, nausea and dizziness to the transplant team. Weight gain is possible as are yeast infections.

Possible Side effects: Can include - fluid and sodium (salt) retention, high blood sugar, muscle weakness, bone disease, stomach ulcers, impaired wound healing, acne, mood swings, anxiety, cataracts, glaucoma, weight gain, hormone disorders, and growth suppression in children.

Imuran® (Azathioprine) – ImmunosuppressionImuran® is an immunosuppressant that helps prevent rejection by decreasing purine synthesis in cells. It is usually given with other immunosuppressants to help prevent rejection of the new kidney. It may be used for long-term (perhaps lifetime) immunosuppression. Report any fever, chills, sore throat, fatigue – since serious infections can occur. Avoid crowds to decrease risk for infection. Use a soft-bristled toothbrush to prevent bleeding.

How Supplied – Tablets – 50mg; liquid - 10mg per ml

Additional Considerations: Imuran® can lower white blood cell and platelet counts; report any unusual bleeding and bruising to the transplant team. Take exactly as prescribed. Do not skip doses. Treatment is ongoing to prevent rejection.

Possible Side effects: Can include - nausea, vomiting, and reduced white blood cells and/or platelets.

Orthoclone – OKT3® (Muromonab-CD3) – Immunosuppression

Orthoclone-OKT3® is an immunosuppressant that helps prevent rejection by blocking T-lympocyte cell function. It is usually given immediately after surgery to prevent rejection and can also be given to fight rejection. The transplant team will determine the dosage you require based on your weight, how the transplant is functioning, white blood cell count, platelet count and possible side effects of the drug.

How Supplied – IV form only – Adult: 5mg/day; Child: 100μg/kg/day. Therapy usually lasts 10 – 14 days. Tylenol® or Benadryl® may be given before treatment with OKT3® to reduce the side effects.

Additional Considerations: Notify the transplant team IMMEDIATELY if you experience wheezing, difficulty breathing, rapid heart beat, difficulty swallowing, rash or itching.

Possible Side effects: Can include - wheezing, difficulty in breathing, chest pain, fever, chills, nausea, vomiting, diarrhea, tremors, headaches, rapid heart rate, muscle stiffness, and high or low blood pressure. The most uncomfortable side effects generally occur only during the first few doses or in the first 1 to 4 days.

Zenapax® (Daclizumab) – ImmunosuppressionZenapax® is an immunosuppressant that is used in combination with standard immunosuppressive drugs. It is the first genetically engineered drug that helps reduce the risk of kidney transplant rejection without increasing the overall side effects. It is used with cyclosporine and corticosteroids. The standard course of therapy is usually 5 doses, with the first dose given prior to transplantation. The 4 remaining doses are given in intervals of 14 days. Usually no dosage adjustment is required.

How Supplied – IV form only – 1mg/kg of body weight. Mixed with sodium chloride and given over 15 minutes.

Additional Considerations: Report any fever, chills, sore throat, fatigue – since serious infections can occur. Increase fluids during treatment.

Possible Side effects: Can include – chills, tremors, difficulty breathing, vomiting nausea, diarrhea, constipation, high or low blood pressure, rapid heart beat, bleeding, fluid retention, chest pain, acne and fatigue.

Infection-fighting drugs can be either anti-infective or anti-viral. Both types interfere with the reproduction of the virus or bacteria. Do not stop taking the drug until the entire prescription is used – even if you begin to feel better.

Bactrim® (Trimethoprimsulfamethoxazole) – Antiinfective

Bactrim® is used to prevent and treat Pneumocystis carnii pneumonia (PCP) and other infections. The risk of PCP is increased for transplant patients because of the drugs taken to suppress your immune systems, which reduce your bodies’ ability to fight infections. Notify your transplant team if you are allergic to sulfa containing medications.

How Supplied – different strengths of tablets, liquid and IV – dosage and length of treatment time is determined by your transplant team and is based on your weight in addition to the specific infection.

Additional Considerations: Increase your fluid intake while taking this drug. Check with the transplant team for amounts of increase.

Possible Side effects: Can include – decreased white blood cell count, nausea, vomiting, rash, itching, and loss of appetite. Cytovene® (Ganciclovir) – AntiviralCytovene® is used to prevent and treat Cytomegalovirus, (CMV). The first few doses are usually given IV in the hospital. The transplant team will determine the dosage and length of treatment time based upon your weight.

How Supplied – Capsules in varying strengths; powdered form for IV dilution.

Additional Considerations: Increase your fluid intake while taking this drug. Check with the transplant team for amounts of increase. Promptly report signs of itching, bleeding and bruising to the transplant team. Avoid crowds and people with respiratory infections. Use sunscreen to prevent burning. Report any fever, chills, sore throat and fatigue.

Possible Side effects: Can include – reduced white blood cell and platelet counts, abnormal kidney function – (while taking drug), fever, rash, headaches, and confusion.

Zovirax® (Acyclovir) – AntiviralZovirax® is used to prevent and treat herpes simplex and shingles. It will not get rid of the herpes viruses, but it will lessen the pain and help heal the sores. It may be used to decrease the severity of CMV infections. The transplant team will determine the dosage and length of treatment time based on the specific disease and your weight.

How Supplied – Capsules, liquid and IV, in varying strengths. Do not break, chew or crush capsules. May be taken with food or without food. Take with full 8 ounces of water.

Additional Considerations: Increase your fluid intake while taking this drug. Check with the transplant team for amounts of increase. Wear loose-fitting clothing to avoid irritating the area(s) and spreading the virus. Keep the area as clean and dry as possible. Drug does not prevent the spread of the virus to others. It is best to avoid sex if there is an active outbreak. Avoid kissing or having oral sex with someone that has a cold sore. Condoms help prevent the spread of the virus, however vaginal jellies and diaphragms do not. Promptly report signs of itching, bleeding and bruising to the transplant team. Avoid crowds and people with respiratory infections. Use sunscreen to prevent burning. Report any fever, chills, sore throat and fatigue.

Possible Side Effects: Can include – nausea, vomiting, diarrhea, headache, and rash.

Anti-fungal drugs are used to treat or prevent fungus infections. The immunosuppressive therapy you are taking increase your risk of getting a serious fungal infection. Fungal infections can take the form of thrush, or in women vaginal yeast infections. It is extremely important that you inform your transplant team if you think you may have a fungal infection.

Anti-fungal drugs can be liquid, lozenges, creams, suppositories or pill form. The transplant team will determine which will work best for the fungal infection you have. It is important to take all the medication prescribed by your doctor – even if you begin to feel better. Anti-fungal drugs have the following possible side effects: nausea, vomiting, diarrhea, a metallic taste, and unpleasant mouth sensations.

Some medications you take can cause ulcers in the stomach and upper intestine, because of this, you may need to take other

medications to help protect your digestive system. Your transplant team will prescribe these drugs when necessary.

Antacids - DI-GEL®, MYLANTA®, ROLAIDS®, MAALOX®, and TUMS® are a few of the over-the-counter medications available. The ingredients in them vary. They should not be taken with immunosuppressive medications. Check with the transplant team before taking any medication!

Anti-Ulcer Medicines - TAGAMENT® (cimetidine), ZANTAC® (ranitidine), PEPCID® (famotidine), PRILOSEC® (omeprazole), and CARAFATE® (sucralfate) are medications used to prevent and sometimes treat ulcers of the stomach of upper intestine. It is important to follow the doctor’s instructions when taking any of these drugs. Some of these drugs interact with other medications. Side effects vary per individual but can include headache, nausea, vomiting, diarrhea, constipation and gas.

Nutritional Supplements - The transplant team may recommend that you take vitamin, iron, magnesium, and/or calcium supplements in case your diet is not providing adequate amounts of the nutrients that is needed.

Special Notes for Myself on the Drugs I am Taking:

A number of postoperative complications are possible, such as infections, high blood pressure, rejection and diabetes. There is no way to predict which patients will have problems. The transplant team will do its best to reduce the likelihood of complications and to treat them promptly if they occur. Following instructions carefully and keeping the transplant team informed of any difficulties will help you return quickly to a normal, active life.

Notify the Transplant Team if You:

o Have prolonged illness (nausea, vomiting, diarrhea) o Are unable to take medicines by mouth due to illness o Thinks the directions on the label may be different from

what you were told.o Have a reason to take aspirin, TYLENOL®

(acetaminophen), other pain relievers, cold remedies, or diet pills

o Feel you are having a reaction to the medications o Have had a change in health or eating habits o Have a new prescription from your local doctor or a

change in a current prescription o Experiences any unusual symptoms or side effects, as

they may be related to the medications you are takingo Are undergoing dental work of any kind o Experience emotional, personal, or family concerns

Infections: Immunosuppressive medications interfere with your natural immunity; therefore, you will be more susceptible to infections after transplant surgery. The following are some of the most common infections:

Viral Infections:

Cytomegalovirus (CMV) - CMV is one of the viral infections that occur most frequently in transplant patients. The risk of CMV is highest in the first months after transplantation. Signs include: fatigue, high temperature, aching joints, headaches, visual disturbances, and pneumonia. Treatment may include hospitalization.

Viral Infections Continued:Herpes-simplex virus type I and II - These viruses most often infect the skin but can also occur in other areas such as the eyes and lungs. Type I typically causes cold sores and blisters around the mouth, and type II causes genital sores. Herpes is an infectious disease and can be transmitted sexually. Herpes infections in transplant patients, however, are not necessarily transmitted sexually.

Most herpes-simplex infections are mild, but occasionally they can be severe. Although there is no cure for herpes, it can be treated. Depending on the severity of the infection, the treatment is either topical, oral, or intravenous (IV). You should contact the transplant team immediately if you believe you have herpes.

Symptoms of herpes include: feeling weak and having painful fluid-filled sores in the mouth or genital area. Women should also be aware of any unusual vaginal discharge.

Herpes zoster (shingles) - Shingles appear as a rash or small water blisters, usually on the chest, back, or hip. The rash may or may not be painful. You should notify the transplant office if such a rash occurs.

Fungal Infections:Candida (yeast) - Candida is a fungus that can cause a variety of infections in transplant patients. It usually appears in the mouth and throat but may also be in the surgical wound, eyes, or respiratory and urinary tracts. Candida is most severe in the bloodstream. If infection occurs in the mouth or throat, it is called thrush. Thrush produces white, patchy raw areas, pain or tenderness, a white film on the tongue, and difficulty swallowing. Candida can also infect the esophagus (the tube from your mouth to your stomach) or, in women, the vagina. Vaginal infections

usually produce an abnormal discharge that may be yellow or white. Notify the transplant office if a Candida infection ocurs.

Bacterial Infections:Wound infections - Bacterial wound infections can occur at the surgical site. If you have a fever or notice redness, swelling, tenderness, or drainage at the incision, notify the transplant team. After a wound culture (a test for bacteria) is taken, an antibiotic will be prescribed if infection is present.

Other Infections:Pneumocystis carinii is a germ similar to a fungus, and it is normally found in the lung. In people whose immune systems are suppressed, it may cause a type of pneumonia (PCP). Early in the illness, a mild, dry cough and a fever may occur. If you suspects that you have a cold or flu-like illness, contact your physician immediately. High Blood Pressure:High blood pressure and heart disease are common disorders that become more frequent as people grow older. High blood pressure is also a side effect of some medications. You may need to take a medication to control your blood pressure. There are many different types of drugs available to control high blood pressure. You may need to try several different medications. The transplant team or local physician will select the one that works best for each specific patient.

A diuretic (water pill) may also be prescribed to lower blood pressure, increase urine output, and remove extra fluid.

Rejection:This happens when your body’s immune system thinks your new organ is “foreign” and attempts to destroy it. You will take immunosuppressive medications for the rest of your life to prevent rejection. There are several types of rejection:

Hyperacute rejection - happens when the body immediately destroys the new kidney, this is rare because of the crossmatch testing used before transplant.

Acute rejection - although this can happen at any time after the transplant, most often it happens during the first several months. Giving you higher doses of medication by mouth or by intravenous infusion can treat this. You may get this treatment as an outpatient if it is recognized early.

Chronic rejection - this may happen months or years after the transplant. This type of rejection is resistant to treatment with current medications. This will cause your new organ to slowly stop working.

Acute Tubular Necrosis (ATN) - this is a condition when the kidney doesn't work right away after transplant. ATN is usually temporary. It can be caused by a long organ storage time on ice before transplant or by medications. The symptoms are treated in two ways: 1) By limiting the salt, protein, potassium in your diet, and fluid intake, or by dialysis. 2) The transplant team will look at the lab results, your weight, your limiting fluid intake, urine output, and vital signs to decide which treatment you will need. DiabetesThe term diabetes means that your blood sugar levels are too high. This can be caused by some of the medications you are taking for your transplant, such as Prednisone, Prograf®, Neoral® and/or Cyclosporine. You may need to start taking insulin or increase your dose of insulin to help control your blood sugar.

Symptoms of diabetes may include: increased thirst, increased frequency of urination, blurred vision, and confusion. Notify your transplant team or local physician if you experiences

any of these symptoms. Blood sugar can be reduced through weight loss, careful diet, and exercise. An oral diabetes drug or insulin injections may be necessary. If you develop diabetes, special teaching will be given to assist you in dealing with this complication.

Record of Infections, Elevated Blood Pressure, or Rejection Questions:

Factors in Organ Donation Process

Transplant Coordinator

When an organ is donated from a person who has died, it is made available to an eligible patient on the waiting list. Before the transplant can take place, however, several things happen.

1. The local Organ Procurement Organization (OPO) gathers information about the organ - size, condition, blood and tissue type - and sends this to the United Network for Organ Sharing (UNOS). UNOS is a national organization that oversees the patient waiting list, assuring equal and fair access for all patients to organs for transplantation. 2. A patient on the UNOS list who is most qualified for the organ - due to waiting time, blood and tissue match, and other factors - is selected and his or her center is notified.

3. Although a patient meets all the criteria and appears to be a good match for the organ, the organ still has to be accepted by the transplant center. The transplant team has a very short time to consider several factors before accepting that organ for the particular patient. If, in the physician's judgment, the organ offered presents undue risks to the patient, it may be refused. There are a number of reasons for refusing an organ, such as:

Patient condition - The patient may currently be too ill to undergo surgery. Or, the patient may be out of town or otherwise unavailable for surgery at that time.

Donor condition - The donor might have had high blood pressure, diabetes or some other illness that might have harmed the donated organ.

Organ condition - If an organ has been outside the donor's body for too long it might not work as well and may not help the patient. Or, the organ might have been damaged during recovery from the donor or during transit to the transplant center. Sometimes, final examination of the organ shows previously unseen risks, such as too much fatty tissue or badly formed blood vessels.

Donor/recipient compatibility - Critical "matching" tests, done just prior to surgery, sometimes reveal unknown incompatibilities that would result in failure of the transplant.

Transplant center factors - Geography may be a factor, as it may not be possible to get the organ to the center within a desirable amount of time.

There are some differences among transplant centers overall in terms of how often organs are accepted or refused. But recent studies have found that how often a center accepts or refuses transplant organs does not seem to affect such important factors as how long patients wait for transplants or how well those patients do either before or after transplant.*

*From the United Network for Organ Sharing (UNOS') Summary of Key Findings 1113197. The UNOS 1997 Report on Center-Specific Organ Acceptance Rates.

4. The donor - Once doctors feel sure that someone is a good transplant candidate, the search for a new kidney will begin. The donor must be free from disease, infection, or injury that affects the kidney and usually of the same or a compatible blood type (see table below)

BLOOD TYPE COMPATIBILITY CHART

Blood Type

Can receivekidney from:

Generally candonate a

kidney to:

O O O, A, B, AB

A A, O A, AB

B B, O B, AB

AB O, A, B, AB AB

Transplant centers may differ on compatibility guidelines for the different donors.

There are 3 different kinds of kidney donors: Cadaveric Donor: A cadaver donor kidney (kidney/pancreas) is one that comes from a person who has just died. The family of this person has given permission for the kidneys, and possible other organs, to be donated for someone who needs a transplant. Live Related Donor: A live related donor kidney comes from a blood relative, like a parent, brother, sister, or an adult child. Points to remember:

A kidney from a relative will be a better match. This means that there is less chance of rejection and you may not have to take as much (immunosuppressive) medicines.

There is no waiting time after the evaluation for a living related transplant unless the donor needs to have some medical problems taken care of.

You and the transplant team can plan when you will have the transplant surgery.

Fewer people need temporary dialysis after a living related transplant than after a cadaver transplant.

The donor will need about 6-8 weeks to recover. The recovery time may be less if a laparoscopic kidney recovery is done.

Live Unrelated Donor: A live unrelated donor kidney comes from someone who is not related to the person, like a spouse or a friend. Points to remember:

There is no waiting time after the evaluation for a living unrelated transplant unless the donor needs to have some medical problems taken care of.

You and the transplant team can plan when you will have the transplant surgery.

Fewer people need temporary dialysis after a living unrelated transplant than after a cadaver transplant.

The donor will need about two months to recover – may be less, see above.

If you are thinking about a live donor transplant, there is one basic rule: The Donor Must Be Willing To Give You The Kidney Without Pressure From Anyone.

Other information that might be helpful to know: The donor will not have to pay for the testing or the

surgery. This is paid for through your health insurance. The donor will need to have 4-8 weeks off from work to

recover from the surgery. If the donor has been working before the surgery, it may be possible for them to receive state disability payments while they are recovering.

The donor will have many tests before the surgery. There will be laboratory tests, x-rays, a physical exam and a visit with the social worker or psychologist. This testing is done to make sure that the donor is healthy. It helps to limit complications for both the donor and for you.

The transplant coordinator will arrange for testing of the potential donor.

The Waiting List & Other Concerns: Many waiting transplant recipients falsely believe that the waiting list is like a ladder - that they are added to the bottom of the list and move up as recipients ahead of them receive their transplants. Not so. The list is in order of matching priority as indicated, according to length of time waiting, blood type, and tissue type. The list is blind to age, sex, and race. The average waiting time is about 2 - 5 years, depending on blood type.

Recipients do not necessarily move up the list. For example, if a waiting recipient has blood type O, his or her name will not appear on the list as a potential recipient for a donor with blood type B. Even though one may have waited longer than another, he or she may not receive the next available organ(s). The list is constantly changing.

Each potential recipient has an equal chance at receiving a transplant. Many medical factors related to a proper match enter the equation. The UNOS registry was designed to assure the equitable sharing of available transplantable organs.

Publicity The media may help boost the general awareness of the need for organ donation, but they do not enhance a particular patient's chances of receiving an organ. Some waiting transplant recipients publicize their need through radio and television. Others send letters to physicians and transplant centers describing their medical condition. Well-intentioned letters and media coverage have no influence on the distribution of available organs. All matches are made from the UNOS national registry. Preferential treatment does not exist.

Organ Donation Awareness OPO’s (organ procurement organizations) communicate the importance of organ donation through a network of volunteers, donor family members, waiting transplant patients and their families. These volunteers participate in a speaker’s bureau and help staff booths at health fairs.

Donor Family Identity The identities of donor families and transplant recipients are kept anonymous and confidential. The donor family that decides to contribute at a time of great personal loss makes a deeply personal and private decision.

If a recipient chooses to write to the donor family, he or she may give or send the card or letter to the transplant coordinator, who will forward the correspondence to an organ procurement organization, which in turn will send it on. Many donor families gain a sense of comfort knowing that their gift of life has made a difference.

Each organ procurement organization (OPO) is one of 59 federally designated organ procurement centers across the United States. An OPO is responsible for matching organs from a patient who has died as a result of traumatic head injury with an individual awaiting a life-saving organ - the gift of life.

When a staff member at one of the hospitals affiliated with an OPO calls to say that a potential organ donor has been identified, the donation process is set in motion. A procurement coordinator offers the next-of-kin the option of organ donation. If the family agrees, the coordinator calls the national computerized registry of the United Network of Organ Sharing (UNOS), in an effort to match medically and physically the organ donor with a waiting transplant recipient.

The Role of the OPO Coordinator When a suitable recipient is found, the OPO coordinator notifies the surgeon who will transplant the organ. If the organ is indeed suitable, the transplant surgeon accepts the organ for transplantation at the recipient’s transplant center.

The OPO coordinator schedules the use of an operating room suite for the recovery of the donor organ(s) at the hospital where the donor remains. The coordinator also oversees the medical evaluation of each organ and assists in its surgical recovery. When the transplant surgeon accepts an organ offered by the coordinator, the transplant center’s coordinator calls the waiting recipient, prepares the transplant center’s operating suite, and coordinates the transportation of the organ to the transplantation center.

Individuals awaiting transplantation, as well as those who have received a transplant, are monitored medically by the transplant recipient coordinators at each transplantation center.

History of the National Organ Procurement and Transplantation Network In the early 1980s, the advent of the immunosuppressant drug cyclosporine made the transplantation of organs other than kidneys feasible. This development led individuals to appeal to the public through the media and their legislators for assistance in finding suitable donor organs. The demand for these organs greatly exceeded the supply.

There was no centralized network to increase the utilization of scarce donated organs nor were there criteria governing how an individual obtained access to transplantation. To further complicate matters there was a growing concern that wealthy citizens of foreign countries were coming to the United States to take advantage of transplantation technology to the detriment of terminally ill U. S. citizens also in need of the same technology.

These issues resulted in public demand for the implementation of a national system. Thus, the National Transplant Act of 1984 was passed by Congress. The act called for the creation of a national task force to study issues regarding transplantation and establishment of a new National Organ Procurement and Transplantation Network (OPTN). The OPTN includes all organ procurement organizations, transplant centers and tissue typing laboratories as well as patients, patient families, donor families, hospitals, voluntary health organizations and thousands of other dedicated individuals including physicians, other health care professionals, ethicists, clergy, social scientists, attorneys, health care management and government officials. The principal purpose of the OPTN is to ensure access to organs by critically ill patients and improve organ procurement and

efficiency. Another key element of the OPTN is the development and administration of policy by the transplant community. The OPTN develops membership criteria standards based on training and experience of medical personnel. For example, an approved kidney transplant program should have a surgeon who has a year of training and a year of experience in kidney transplantation. In addition, centers approved for liver or pancreas transplants should have a surgeon with training and experience in the transplantation of the organ being transplanted.

This act also created a task force on organ transplantation that met over a period of 18 months and issued its report in April 1986. The Department of Health and Human Services (DHHS) awarded a one-year contract for the development and implementation of the national network to the United Network for Organ Sharing (UNOS) on September 30, 1986.

UNOS immediately implemented parts of the network but did not complete full implementation until the end of the first year, as called for in the contract. The entire system went into effect October 1, 1987. The network has been fully operational for over 15 years.

All clinical transplant centers, organ procurement organizations and tissue typing laboratories in the United States belong to and participate in UNOS. UNOS members have developed membership criteria based on the education, training and experience of medical personnel and monitor compliance with those standards to ensure high quality and consistent patient care. A national waiting list of all patients in the country waiting for solid organ transplantation is maintained on the UNOS computer system. UNOS operates a 24-hour-a-day organ

placement center and computer system to ensure efficient and optimal matching of donors and recipients.

Policies ensuring access to and allocation of organs are in place and are monitored through the use of a national computer system. To facilitate the development of policy and improve scientific methods, UNOS maintains a Scientific Registry, which contains scientific and demographic data on all organ donors and tracks all organ recipients throughout their lives.

Members of the UNOS Board of Directors and its 15 permanent and 4 ad hoc committees include members of the public as well as patients. Included are experts from the fields of medicine, law, ethics, theology, social and behavioral sciences and health care financing. UNOS distributes the scientific and medical rationale for its policies for public comment and, where appropriate, holds public hearings. UNOS operates as the OPTN under contract with the U. S. Department of Health and Human Services and submits to department oversight, providing extensive information to the department for its review regarding OPTN policies.

Every patient waiting for an organ transplant in the United States is registered in the UNOS computerized data network. All have equal access to donated organs. The 59 organ recovery organizations across the country are members of UNOS.

The organ procurement organization coordinator contacts UNOS and inputs the organ donor’s medical history, physical measurements, and blood type, and prints a computerized list of likely transplant recipients. The list is printed in order of matching priority, which includes medical criteria, length of time waiting, blood type, body weight, size of recipient diseased organ, and severity of illness.

Kidney and pancreas recipients are also matched by tissue (genetic) typing.

If the first potential recipient does not match medically with the available organ, the OPO coordinator maintains the computer

search in an assigned region or elsewhere in the nation for a potential recipient who most nearly matches the donor. Likewise, organ recovery organizations throughout the United States will notify each other when an organ becomes available for waiting recipients in their respective areas.

Matching donor organs with recipients is critical. Transplant waiting times may vary from a few months to several years because of matching difficulties.

My Specific Information:

ABSORPTION - the degree and speed at which a drug enters the bloodstream from the small intestine

ACUTE TUBULAR NECROSIS (ATN) - reversible kidney damage resulting in delayed kidney function. Among other factors, it may be caused by quality of donor organ, time of organ storage before transplantation, or medications to prevent rejection.

ALKALINE PHOSPHATASE - an enzyme produced by liver (and other) cells; elevated blood levels of this substance may indicate abnormal function of the liver or other organs

ALLOGRAFT (allogenetic graft or homograft) - a graft between two individuals who are of the same species (eg. human) but have genetic differences

ANEMIC - low red blood cell count

ANESTHETIC - medication that reduces pain by dulling sensation

ANTACID - a drug that aids in protecting the digestive system and relieves heartburn and digestive discomfort

ANTIBODY - a protein produced by the body to eliminate foreign substances, such as bacteria

ANTIGEN - a foreign molecule or substance, such as a transplant, that triggers an immune response. This response may be the production of antibodies, which, in turn, try to inactivate or destroy the antigen (transplanted organ)

ARTERIOGRAM/(Angiogram) - an x-ray of the arteries taken with the aid of a dye

ATHEROSCLEROSIS - a buildup of fats in the lining of the arteries that may interfere with the flow of blood

B Cell - a specialized white blood cell responsible for the body's immunity. B cells play a central role in antibody production BACTERIA - small organisms (germs) that can cause disease

BIOAVAILABILITY - a measure of how much of an administered drug is absorbed into the bloodstream, actually reaching the intended site of action in the body. For example, medicine is absorbed from the GI tract, travels through the bloodstream, and reaches the organ tissues, where it works to fight infection, prevent rejection, etc.

BIOPSY - the removal and examination of tissue for diagnosis

BLADDER - the part of the urinary tract that receives urine from the kidneys and stores it until urination

BLOOD UREA NITROGEN - a byproduct of protein breakdown in the body

BRAIN DEATH - when the brain has permanently stopped working, as determined by a neurological surgeon, artificial support systems may maintain functions such as heartbeat and respiration for a few days

BUN - BUN stands for blood urea nitrogen, a waste product normally excreted by the kidney. Your BUN value represents how well the kidneys function

CADAVERIC DONOR - an individual who has recently died of causes that do not affect the function of an organ to be transplanted. Either the person or the person's family has generously offered organs and/or tissues for transplantation

CELLCEPT® - an immunosuppressive drug used with other immunosuppressants to prevent the rejection of the transplanted organ. Also known by its chemical name, mycophenolate mofetil

CHOLESTEROL - a form of fat that performs necessary functions in the body but can also cause heart disease; cholesterol is found in animal foods such as meat, fish, poultry, eggs, and dairy products

COAGULATION - blood clotting

CORTICOSTEROIDS - a category of immunosuppressive medications that includes prednisone and prednislone

CREATININE - a substance found in blood and urine; it results from normal body chemical reactions; high blood creatinine levels are a sign of depressed kidney function CROSSMATCH - a test in which donor and recipient blood samples are mixed together. A "positive" cross match shows the donor and recipient are incompatible. A "negative" cross match shows there is no reaction between the donor and the recipient. This means that the donor and recipient are compatible and the transplant may proceed.

CYCLOSPORINE - the immunosuppressive ingredient in Neoral® (cyclosporine capsules and oral solution for micro emulsion) and Sandimmune® (cyclosporine), an earlier form of cyclosporine. Neoral® and Sandimmune® are not bioequivalent and cannot be used interchangeably without physician supervision

CMV (CYTOMEGALOVIRUS) - a virus infection that is very common in transplant recipients; it can affect the lungs and other organs as well; a member of the family of herpes viruses

DETOXIFY - to change a harmful substance into a safer form

DIABETES - a disease in which patients have high levels of sugar in their blood

DIALYSIS - the process of cleansing and achieving chemical balance in the blood of patients whose kidneys have failed. Dialysis may refer to hemodialysis or peritoneal dialysis (PD)

DIASTOLIC - the bottom of two blood pressure numbers, which measures blood pressure when the heart is at rest

EDEMA - excess fluid in body tissues; swelling of the ankles, for example, is a sign of edema

ELECTROCARDIOGRAM - a recording of the electrical activity of the heart

ELECTROLYTE - generally refers to the dissolved form of a mineral such as sodium, potassium, magnesium, chlorine, etc.

ENZYME - a protein made in the body and capable of changing a substance from one form to another

FETUS - a human embryo in the mother's uterus

GASTROENTEROLOGIST - a physician who specializes in the care of the digestive tract

GINGIVAL HYPERTROPHY - enlargement of the gums. It is a common side effect of cyclosporine therapy, but can be managed with good oral hygiene

GLUCOSE - a type of sugar found in the blood

GRAFT - an organ or tissue that is transplanted

GRAFT SURVIVAL - when a transplanted tissue or organ is accepted by the body and functions properly. The potential for graft survival is increased when the recipient and donor are closely matched, and when immunosuppressive therapy is used

HELPER T CELL - the specialized white blood cell that tells other parts of the immune system to combat infection or foreign material

HEMATOCRIT - a measure of the red-blood-cell content of blood

HEMODIALYSIS - a method of dialysis in which blood is purified by circulating through an apparatus outside the body (sometimes called an "artificial kidney")

HERPES - a family of viruses that infect humans; herpes simplex causes lip and genital sores; herpes zoster causes shingles

HIRSUTISM - an excessive increase in hair growth - especially male-pattern hair growth in a female. Hirsutism is a common side effect of corticosteroids and can also occur with cyclosporine therapy, but is easily treated with depilatory creams or other methods of hair removal

HISTOCOMPATIBILITY - the examination of human leukocyte antigens (HLA) in a patient, often referred to as "tissue typing" or "genetic matching". Tissue typing is routinely performed for all donors and recipients in kidney and pancreas transplantation to help match the donor with the most suitable recipients. This helps to decrease the likelihood of "rejecting" the transplanted organ.

HLA (human leukocyte antigens) system - genetically determined series of antigens that are present on human white blood cells (leukocytes) and tissues

HYPERTENSION - high blood pressure IMMUNE RESPONSE - any defensive reaction to foreign material by the immune system

IMMUNE SYSTEM - the system that protects the body from invasion by foreign substances, such as bacteria and viruses, and from cancer cells

IMMUNITY - a condition of being able to resist a particular infectious disease

IMMUNOSUPPRESSIVE AGENTS - medications given to prevent rejection of a transplanted organ

IMURAN® - an immunosuppressive drug used with other immunosuppressive drugs to help prevent the rejection of a transplanted organ. Also known by its chemical name, azathioprine

INCOMPATIBLE - no likeness or similarity between donor or recipient blood type or organs

IV, or INTRAVENOUS - refers to giving medicines or fluids directly through a vein

IV CATHETER - a small needle with a hollow tube inserted into a vein and used to give medicines or fluids

KIDNEY - one of the two kidney-bean-shaped organs located on both sides of the spine, just above the waist. They rid the body of waste materials and maintain fluid balance through the production of urine

LIVING-RELATED DONOR (LRD) - a blood relative who donates an organ

MATCH - the compatibility between recipient and donor. In general, the more closely the donor and recipient "match", the greater the potential for a successful transplant

MICROEMULSION - a suspension or mixture of tiny droplets of one liquid in a second liquid, such as the smooth mixture that is formed when Neoral® (cyclosporine capsules and oral solution for microemulsion) combines with fluids in the digestive system

NEPHROLOGIST - a physician who studies the kidney and treats kidney disease

NEUTROPHIL - a type of white blood cell NONCOMPLIANCE - failure to follow the instructions of one's health care providers, such as not taking medicine as prescribed or not showing up for clinic visits

ORALLY - by mouth

ORGAN PRESERVATION - between organ procurement and transplant, organs require special methods of preservation to keep them viable. The length of time that organs and tissues can be kept outside the body varies, depending on the organ, the preservation fluid and the temperature.

ORGAN PROCUREMENT ORGANIZATION (OPO) - OPO's serve as the integral link between the potential donor and recipient and are accountable for the retrieval, preservation and transportation of organs for transplantation. All OPOs are UNOS members.

ORGAN REJECTION - an attempt by the immune system to reject or destroy what it recognizes to be a "foreign" presence (for example, a transplanted liver)

PANEL REACTIVE ANTIBODY (PRA) - a way of measuring immune system activity within the body. PRA is higher when more antibodies are being made.

PCP - Pneumocystis carinii pneumonia, a type of pneumonia seen primarily in patients whose immune systems are suppressed

PERITONEAL DIALYSIS - a method of purifying the blood by flushing the abdominal cavity with a dilute salt solution

PLATELET - a small blood cell needed for normal blood clotting

POTASSIUM - a mineral essential for body function

PREDNISONE - a manufactured steroid hormone taken by most transplant recipients to help prevent rejections

PROPHYLACTIC MEDICATION - medication that helps prevent disease

REJECTION - an immune response against grafted tissue, which, if not successfully treated, results in failure of the graft to survive

RENAL - refers to the kidney RETRANSPLANTATION - due to organ rejection or transplant failure, some patient’s need another transplant and return to the waiting list. Reducing the number of retransplants is critical when examining ways to maximize a limited supply of donor organs.

SANDIMMUNE® - (cyclosporin)-an earlier formulation of cyclosporine. An immunosuppressive drug used with other immunosuppressive drugs, that acts specifically to inhibit helper T cells, thereby helping prevent the rejection of a transplanted organ. Sandimmune® and Neoral® are not bioequivalent and cannot be used interchangeably without physician supervision

SENSITIZED - being immunized, or able to mount an immune response, against an antigen by previous exposure to that antigen

SHINGLES - a herpes virus infection (herpes zoster) that usually affects a nerve, causing pain in one area of the body

SODIUM - a component of table salt (sodium chloride); an electrolyte that is the main salt in blood

STATUS - indicates the degree of medical urgency for patients awaiting heart or liver transplants

STRICTURE or STENOSIS - a narrowing of passage in the body

SURVIVAL RATES - survival rates indicate how many patients or grafts (transplanted organs) are alive/functioning at a set time posttransplant. Survival rates are often given at one, three and five years. Policy modifications are never made without examining their impact on transplant survival rates. Survival rates improve with technological and scientific advances. Developing policies that reflect and respond to these advances in transplantation will also improve survival rates.

SYSTOLIC - the top of the two blood pressure numbers, which measures the maximum blood pressure reached as blood is pumped out of the heart chambers

THRUSH - a fungus infection in the mouth

TRIGLYCERIDES - a form of fat that the body makes from sugar, alcohol, and excess calories

T CELLS - a white blood cell responsible for the body's immunity. T cells can destroy cells infected by viruses, graft cells, and other altered cells

TISSUE TYPING - a blood test (performed prior to transplantation) to evaluate the closeness of tissue match between donor's organ and recipient's HLA antigens.

ULTRASOUND - a probe that uses high-frequency sound waves that pass into the body, are reflected back, to build an image of one's internal organs that is shown on a monitor

URETHRA - a tube that drains urine from the bladder to the outside

URETERS - tubes that drain urine from the kidneys to the bladder

URINARY TRACT INFECTION (UTI) - an infection of one or more parts of the urinary tract

VIRUS - a very small agent (germ) that causes infection

WAITING LIST - after evaluation by the transplant physician, a patient is added to the national waiting list by the transplant center. Lists are specific to both geographic area and organ type: heart, lung, kidney, liver, pancreas, intestine, heart-lung, kidney-pancreas. Each time a donor organ becomes available, the UNOS computer generates a list of potential recipients based on factors that include genetic similarity, organ size, medical urgency and time on the waiting list. Through this process, a "new" list is generated each time an organ becomes available.

WHITE BLOOD CELLS - cells in the blood that fight infection; part of the immune system

Nephron News is a patient centered newsletter distributed by Network #12 in accordance with the Centers for Medicare & Medicaid Services contract number 500-00-NW12. Network #12 proudly serves the renal community in Iowa, Nebraska, Missouri, and Kansas. Special thanks are extended to the University of Southern California’s Transplant Program. Located on the web at: http://www.surgery.usc.edu/divisions/kidney/index.html