Your KidneyTransplant Evaluation

2 How the Kidney Works3 Causes and Signs of Kidney Disease4 Your Kidney Transplant Evaluation

Getting on the Waiting ListBlood Test OverviewBecoming Active on the Waiting List

8 Kidney Donor Sources9 The Waiting Period10 Re-Evaluation11 Transplant Surgery12 Maintaining a Healthy Transplant13 Resuming Activities After Transplant15 What You Need to Know About Disability After Transplant17 Making Your Choice About Transplant

Contents

California Pacific’s Kidney Transplant Program startedin 1969. Since this time, our team has performed kidneytransplant surgery on more than 4,000 patients, thanks inpart to the continuing generosity of organ donors. Our longand successful history has given our team the expertiseneeded for delivering top results and exceptional patient care.

While the prospect of transplantation is overwhelming,our team will walk you through each step of the process,providing personalized care for your situation. To familiarizeyou with the role your kidney plays and what happensduring your transplant evaluation, the following is a briefoverview.

The kidneys are two vital organs that perform many functions to keep the bloodclean and chemically balanced. They are two fist-sized, bean shaped organslocated near the middle of the back, just below the rib cage. Each day, thekidneys process approximately 200 quarts of blood, removing about two quartsof waste products and extra water from the body. The waste and extra waterbecome urine. The urine flows to the bladder through tubes called ureters.

Normal breakdown of tissues and food creates the waste in the blood. If thewaste was not removed, it would build up in the blood and damage the body.Inside the kidney are tiny filtering units called nephrons. There are about a millionnephrons in each kidney. Inside each nephron is a tiny blood vessel called aglomerulus. The glomerulus intertwines with a tiny urine-collecting tube calleda tubule. The tubules receive waste and chemicals the body will use.

How the Kidney Works

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Medical Illustration Copyright©2007 Nucleus Medical Art, All rights reserved. www.nucleusinc.com

Most kidney diseases affect the nephrons, causing them to lose their filteringcapacity. Frequently, kidney diseases slowly destroy the nephrons without anysigns of damage for a long period of time. Nearly all diseases impact bothkidneys at the same time.

Kidney disease can be autoimmune, infection-related, hereditary, or occur as aresult of poisons or trauma. However, the two most common causes of kidneydisease are diabetes and high blood pressure.

People in the early stages of kidney disease usually have no symptoms. As thedisease worsens, the person may have the following symptoms:

● The need to urinate more or less often than usual

● Feeling tired

● Itchy

● Loss of appetite or nausea and vomiting

● Swollen hands and feet or numbness

● Drowsiness or trouble concentrating

● Skin darkening

● Muscle cramps

A kidney transplant might be a treatment option forsomeone whose kidneys have stopped working.

Causes and Signs of Kidney Disease

The kidneys remove chemicals including sodium, phosphorus and potassium, andrelease them back into blood, returning them to the body. The kidneys regulate thebody’s level of these substances so they do not reach harmful levels.

The kidneys also release the following three important hormones:

● Erythropoietin (eh-RITH-ro-POY-eh-tin), which stimulates the bonemarrow to make red blood cells

● Renin (REE-nin), which regulates blood pressure

● Calcitriol (kal-suh-TRY-ul), the form of vitamin D which helps maintaincalcium for bones and for normal chemical balance in the body

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Should you decide to pursue kidney transplantation, yourtransplant evaluation provides an opportunity for you to learnabout kidney transplant surgery, to find out what to expectafterwards and to weigh the benefits and risks of transplanta-tion to help you make a well-informed decision. It is also anopportunity to get acquainted with our medical team.

During evaluation, patients meet with a transplant physician,nurse coordinator and social worker. The visit begins witha slide show about the transplant process and includes aquestion and answer session. Transplant candidates areencouraged to bring loved ones to this visit. Patients then

meet separately with all the transplant team members. During these meetings,the medical work-up needed for each transplant candidate is discussed.The transplant nurse then arranges pre-transplant blood tests (ABO bloodtyping and tissue typing).

Because of the lengthy waiting list for kidney transplantation, California Pacificuses a two-step process so patients can accumulate waiting time whilecompleting final tests necessary for their transplant.

Your Kidney Transplant Evaluation

The first step to get on the waiting list is having pre-transplant labs drawn.Labs that we draw at your evaluation include:

● ABO blood typing;

● Tissue typing; and

● Serologies.

In addition to labs, both the doctor and social worker with whom you met atevaluation need to authorize you for transplant. Usually, it takes about a monthafter your evaluation to be placed on the waiting list.

Step 1: Getting on the Waiting List

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Blood Test Overview

Recipient Compatible Donor

A O, AB O, BAB O, A, B, ABO O

A patient’s blood type is a critical piece of information for transplant. In general,all patients waiting for a deceased donor transplant will receive a kidney from adonor of the same blood type. Patients interested in a living donor transplantneed to find a donor with a compatible blood type (see table below). Bylaws ofthe United Network for Organ Sharing (UNOS) demand that ABO blood typesbe drawn twice for transplant listing.

This test looks for the six histocompatibility antigens that will define the amountof “matching” between a recipient and donor. Although this test (and ABO bloodtyping) is necessary for placement on the transplant waiting list, its importancehas diminished. This is because we now know that even transplants with minimalmatching (say, only one of six antigens) can have excellent outcomes, thanks tonew advances in immunosuppressive medications.

These tests look for a patient’s past exposure to infections such as hepatitis,HIV, other viruses and syphilis.

Panel reactive antibodies show a patient’s level of sensitization to donor antigens.Patients with high PRA levels tend to have more rejection episodes. In addition,it is more difficult to identify a compatible kidney for patients with a high PRAlevel. PRA tests are performed when a patient is put on the waiting list andevery one to three months while waiting. Because of the information this testprovides, it can be used to counsel patients regarding how long they may waitfor a transplant. It also helps the transplant team choose the appropriate anti-rejection medications.

This test establishes compatibility between a particular donor-recipient pairand, for patients with a living donor, is performed during the transplant work-up.A “negative” cross-match suggests that a donor and recipient are compatibleand the transplant can proceed. If the cross-match is “positive,” the pair canparticipate in the Paired Donation Program. For patients with a deceased donor,this test occurs prior to transplant surgery, once a donor becomes available.

Tissue Typing

Serologies

Panel ReactiveAntibodies (PRAs)

Cross-match

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Patients will receive a list of additional tests that need to be completed fromthe Kidney Team at the time of their evaluation visit. These tests may includeanything from an x-ray to a sophisticated heart test. The Kidney Team will alsonotify your dialysis unit and primary care doctor of these tests, and you shouldwork with your local doctor to complete them.

Until all these additional tests are complete, a patient is on the waiting list butconsidered “inactive.” This means that you are gaining waiting time but cannotyet receive a transplant. Once all requested tests are completed and reviewedby California Pacific’s team, you are “activated.” This means you are readyfor transplant.

Even though most patients wait on the list for several years, some “active”patients receive a perfectly matched kidney well before their average waitingtime passes. About 16% of transplants in the United States last year wereperfect matches. Whether a patient has been waiting for five days or five years,federal law states that the perfect matched kidney must be offered to himor her.

Because both smoking and obesity can result in poor transplant outcomes,the Kidney Team will not list you as “active” on the waiting list if you smoke orweigh more than 20% over your ideal body weight. Patients who smoke will bereferred to a smoking-cessation program and will undergo intermittent bloodtesting. For obese patients, our social workers will provide resources for weight-loss programs to help get their body weight into an ideal range for surgery.

Common Heart TestsIf you have heart disease, the Kidney Team may require any or all of thefollowing tests to learn more about your condition:

An echocardiogram is a type of ultrasound test that uses sound waves toproduce an image of the heart. It takes about 15 minutes and shows doctorshow well one’s heart chambers fill with blood and pump it to the rest of thebody. An echocardiogram also helps evaluate heart size and valve function,and measures the amount of blood pumped out of the heart with each beat.

Echocardiogram(also called echo orechocardiography)

Step 2: Becoming Active on the Waiting List

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EKG(also calledelectrocardiogram)

Stress Test(different types includeexercise treadmill,stress echo andpersantine thallium)

An EKG measures the electrical signals that control the rhythm of your heart-beat. In this procedure, electrodes are attached to the skin on the chest, armsand legs, where they monitor the heart’s electrical activity. This activity is shownas line tracings on paper, which physicians analyze to view blood flow, inflam-mation, heart rhythm problems and signs of heart injury.

A stress test measures one’s heart function when it has to work harder thannormal, such as during intense exercise. A stress test may be performed withthe use of echocardiography or nuclear medicine techniques. A positive testmay indicate that your heart has inadequate blood flow when it has to workharder than normal. Inadequate blood flow can lead to a heart attack.

If any of the above tests indicate possible heart problems, the Kidney Teamwill work with you and your local doctor to determine if a coronary angiogram(dye study of the coronary arteries), angioplasty (opening of constricted arterieswith a catheter) or cardiac surgery is necessary. Once the heart problem hasbeen addressed, you will likely be able to receive a transplant.

Other TestsThe Kidney Team may request that you have one or more of the followingexams. These help provide more details about your overall health.

These tests measures how well your lungs work when you breathe in and out.Patients with a history of smoking will need these tests.

Women should have PAP smears regularly and if over 40, should also haveroutine screening mammograms. Likewise, men over age 50 should haveroutine prostate screening (PSA, or prostate specific antigen testing).A colonoscopy is also recommended for men and women over 50.

You will need to have a dental check-up prior to transplant listing that showsyour teeth and gums are healthy. While you are waiting for your transplant andfollowing surgery you will need to continue having annual dental exams.

This helps determine the health of one’s lungs and lower respiratory tract.

PulmonaryFunction Tests

Routine HealthScreenings

Chest X-Ray

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Kidneys for transplantation can come from either living donors or the generousdonation of organs by the family of a brain or cardiac death victim (deceasedkidney donor). Specific types of donors include:

Types of Kidney Transplants from a Living Donor

Kidney Donor Sources

Brain Dead Donor: Kidney donor with an irreversible head injury who wasdeclared brain dead based on specific criteria. Brain dead donors remainon life support during organ recovery surgery.

Donation after Cardiac Death Donor (DCD Donor): Kidney donor with asevere brain injury who does not meet the criteria for brain death but has nochance of survival. Donation after cardiac death donors are removed fromlife support prior to organ recovery surgery.

Expanded Criteria Donor (ECD Donor): Any brain dead donor over age60, or over age 50 with concurrent health problems.

Living Related Donor: A living donor who is a healthy blood relative ofthe person awaiting transplant. This includes a sibling, parent, child, aunt,uncle, cousin, etc.

Living Unrelated Donor: A living-unrelated donor is a healthy personwho is emotionally close to, but not blood-related to the person awaitingtransplant. This includes one’s spouse, in-law relatives and close friends.A living-unrelated donor can also include a compatible, anonymous donormatched by the Paired Donation program.

Living donor transplantation is the most successful kidney transplantprocedure. Typically, living donor transplants last longer than deceaseddonor transplants.

Types of Kidney Transplants from a Deceased Donor

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The Waiting Period

Once your name has been activated on the waiting list for a deceased donorkidney, you will need to be prepared and ready to respond should a suitabledonor be found. We cannot predict exactly how long you will remain on thedeceased donor waiting list, but an average wait is between four to six years.If you have a suitable living donor, your transplant coordinator will work with youand your living donor to schedule the surgery at a time that is convenient for all.

During your wait for a kidney transplant, there are steps you can take to ensurethe process goes smoothly. To get organized for transplant, you need to:

● Keep your Transplant Team updated while you’re on the waiting list. Call yourtransplant coordinator at 415-600-1000 (toll-free 1-877-427-6289) or his/herdirect line to notify about any changes to your:

● contact information (address, phone numbers)

● insurance

● doctor or dialysis unit

● medical condition

● Identify an insurance-approved local lab in which you can have blood testsdone after transplant (your dialysis unit will no longer do this)

● Identify your support system

● Identify your transportation system to/from San Francisco for your transplantand for three to six weeks following transplant when you are unable to drive

● Have members of your support system who will be accompanying you toSan Francisco determine their transportation and lodging plan. They willneed money for incidentals – gas, bridge tolls, parking, lodging and food.The Cathedral Hill Hotel is affiliated with California Pacific Medical Center andoffers discounted rates to our patients and families. A shuttle runs betweenthe hotel and hospital.

● Plan how you will get home following your transplant surgery

● If you have disability forms, bring them with you to the hospital and givethem to the Kidney Team before you are discharged.

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When you get close to being called in for a transplant, we will contact you toschedule a re-evaluation appointment. At this appointment, a nurse practitioneror transplant doctor will check your medical status and draw lab work. You willalso meet with our kidney transplant social worker. We want to ensure nothingwill prevent you from receiving a transplant when called to the hospital.

Insurance is a very important part of your transplant – not only for the surgeryitself, but also for the medications that will keep your transplant functioning.Transplant medications can cost as much as $5000 per month, so insurancecoverage is an essential part of your transplant planning.

Patients are responsible for maintaining their insurance coverage both beforeand after transplant. Be sure to respond to any letters or requests for informa-tion you receive from your insurance company. Investigate your out-of-pocketcosts and be aware that prescription coverage is your lifeline to medications.Understand and ask questions about your Medicare benefits. Rememberthat many working-age patients will qualify for Medicare for only 3 yearspost-transplant.

The Kidney Team encourages you to start making education/vocation plansas soon as possible. If you have questions or concerns about your insurancecoverage, don’t wait until you are out of medications or have lost coverage;contact your transplant center immediately. We understand how difficult thissituation can be and we will do everything we can to assist you and direct youto resources. We have resources for vocational rehabilitation, and some patientsmay be able to qualify for medication assistance programs sponsored bydrug companies.

InsuranceCoverage

Re-Evaluation

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When a kidney becomes available for you, the “on-call” nurse coordinator willphone you to come to the hospital. After you arrive, the Kidney Team will do afinal medical exam to make sure you are healthy enough to undergo surgery.

After these preparations, you will be taken to the operating room where afterreceiving a general anesthetic, you will quickly fall asleep. During surgery, thesurgeon places the donor kidney off to one side of your lower abdomen andsews the artery and vein of the transplanted kidney to blood vessels in yourpelvis. The surgery typically takes between two to four hours.

Following surgery, you will be moved to the Intensive Care Unit (ICU) forapproximately 24 hours of close monitoring. The anesthesia will wear off aboutfour hours after transplant, but you may feel groggy for a day or so. You willreceive pain medication should you need it and the team will monitor your urineoutput. The next day, you will be transferred to the transplant floor for furtherrecovery. You will begin to learn about your anti-rejection medications and willeat and walk as soon as possible.

You should expect to spend five to seven days in the hospital. Before you gohome, you will learn how to take new medicines that will help prevent rejectionof your transplanted kidney, know the signs of infection or rejection, change thesmall dressings you may have, and understand general health guidelines.

Transplant Surgery

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Maintaining a Healthy Transplant

Usually, patients find that it takes about three months to adjust to a kidneytransplant and new medications. Your energy level will start to build and youwill notice the impact of having a healthy, functioning organ.

While transplantation can offer a better quality of life, you must take an activerole in your care to ensure your kidney remains healthy. You must remember totake your medications and have lab work done as prescribed, and come to allclinic visits. The following is an overview of what you can expect post-transplant.

The immunosuppressive medications needed to maintain a healthy transplantare a critical part of life post-transplant. You will leave the hospital with a30-day supply of medications provided by an insurance-approved retailpharmacy. After those 30 days, you are responsible for refilling all medications,either through a retail or mail-order pharmacy.

Patients typically leave the hospital taking 12 types of pills. Depending on yourinsurance coverage, you will be required to cover your share of cost or co-payprior to discharge from the hospital. Medications are continuously monitoredand adjusted, however, so after the first year, patients typically take betweenthree to six kinds of pills.

After transplant, regular lab tests help show the transplanted kidney’s function.Patients need to have their blood drawn twice a week, with the results sentto California Pacific for evaluation. At clinic visits, the team will review theresults with the patient and make adjustments to medications if necessary.The frequency of lab tests will gradually decrease following transplant andultimately, patients will have labs done once a month.

The first clinic visit following transplant will be at California Pacific inSan Francisco. If the physicians feel the patient is stable, subsequent clinicvisits can be scheduled at an outreach site.

Medications:The Key to a HealthyTransplant

Lab and ClinicAppointments:Monitoring YourKidney’s Function

Time After Transplant Frequency of Lab Tests

0-6 weeks 2 times a week

6 weeks to 3-4 months 1 time a week

3-4 months to 6-9 months Every other week

9-12 months Every 1-3 months

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Resuming Activities After Transplant

Anxious to resume activities following transplant, many patients inquire aboutthe timeline for their recovery. The following list describes different activities andrecommendations about how and when to start. Because some people bounceback more quickly than others, it is important to listen to your body.

Kidney transplant recipients are advised to follow a low-fat, low-cholesterol dietfollowing their transplant. If you have high blood pressure, the Kidney Team mayask you to follow a low-sodium diet as well.

High potassium can be an issue after transplant, due to side effects of theanti-rejection medications. If this occurs, you will be asked to limit yourpotassium intake.

California Pacific’s Kidney Team recommends that patients begin light exerciseimmediately after transplant. This involves walking – and lots of it. Althoughpatients may not be in the best physical shape because of previous kidneyfailure, they need to push themselves, even if the exercise is tiring. Riding astationary bike offers a good source of exercise and can be started severalweeks after transplant. By six weeks post-transplant, patients can start virtuallyany activity within reason. However, any new activity should be started slowly.If you are overweight, the Kidney Team will encourage you to lose weight andbecome more active.

Most patients can resume driving about three to four weeks post-transplant.Before driving, ensure that your wound is healing well, that you are alert and notfatigued, no longer experiencing significant pain or taking medications that cancause drowsiness. The Kidney Team recommends that another adult driveraccompany you on your first drive post-transplant.

Transplant patients can consider returning to work after about six weeks, althoughthis timeline varies by individual. Some patients actually do some work earlier (if it involves low stress and little physical activity), while some need more time.

Diet and Nutrition

Exercise andWeight Management

Driving

Work

Following transplantation, patients

should limit the amount of fat and

cholesterol in their diet because

anti-rejection medications and a

liberalized diet can cause elevated

cholesterol and fat levels.

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Being In Crowds

Routine HealthScreenings

Sexual activity may be resumed when the surgical staples are out, the incisionhas healed and when both the transplant patient and partner are agreeable.Patients may be more likely to conceive children after transplant and should becareful to use birth control and practice safe sex.

Because transplant recipients are more likely to develop skin cancer, werecommend that all patients guard their skin from the sun. This involvesalways wearing clothing that protects the skin from sun exposure (includinga brimmed hat) and sunblock on all exposed areas.

Because transplant patients are taking medications that suppress their immunesystem, the concern about catching colds and other infections is real. However,we want our patients to enjoy their new life. The Kidney Team does notrecommend avoiding all crowds. Common sense works well here. If someoneclose to you is sick, keep your distance and wash your hands frequently if therehas been contact. If you have prolonged exposure to a sick person, considerwearing an anti-microbial mask. In general, thorough hand washing is the bestway to prevent infections.

To best maintain your health following kidney transplantation, there are a numberof important routine medical issues you need to address. Although these issuesmay not be directly related to your kidney transplant function, being aware ofthem can promote both your overall health and that of your kidney. Each year,we recommend that you receive the following tests by your local primary carehealthcare team:

● Yearly Cholesterol Screening

● Yearly Assessment of Bone Density

● Routine Vaccinations● all transplant patients should receive the flu shot each year● all transplant patients should receive the pneumococcal

pneumonia) vaccine every 3-5 years

● Routine Cancer Screenings (colonoscopy, skin cancer, mammogram,PAP smear, PSA)

Sexual Activity

Sun Exposure

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Social SecurityCoverage

What You Need to Know About Disability After Transplant

Because disability benefits change after transplantation, it is important toknow your options in advance so you can plan accordingly. The Kidney Teamencourages patients to understand their coverage prior to transplant and speakwith a vocational counselor to make the process flow smoothly. An overviewof disability coverage and options follows:

The Social Security Administration has two disability programs, Social SecurityDisability Insurance (SSDI) and Supplemental Security Income (SSI) for individualswhose medical conditions prevent them from working.

Social Security Disability Insurance (SSDI)● covers individuals who are working and paying Social Security taxes

● can be collected while you are involved in an approved rehabilitation program

Supplemental Security Income (SSI)● makes monthly payments to disabled individuals with few assets

and low incomes

● requires no waiting period

Social Security benefits continue for 12 months following transplant surgery.At that point, Social Security re-evaluates each case, but unless you haveanother disabling condition (blindness, stroke or severe amputation) or are over65, your Social Security benefits end. The Kidney Team stresses that “mild sideeffects from medications are not enough to be considered for permanentdisability in any situation.”

Although Social Security benefits typically end 12 months post-transplant,you will continue to receive your Medicare health insurance benefits for 36months post-transplant. Transplant recipients are strongly encouraged to goback to work at one year post-transplant (or earlier) to help prepare for whenall disability benefits end.

Patients can work part-time post-transplant,earning up to $500 per month without itaffecting benefits. By 36 months post-trans-plant, the goal is for transplant recipients tobe working full-time, so they will have fullmedical benefits to pay for medications andhealth care once Medicare disability ends.

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Most California workers who suffer a loss of wages when they are unable towork also receive assistance from a State Disability Insurance (SDI) plan,managed by the California. Employment Development Department’s (EDD)Disability Insurance Branch. When patients receive a transplant, SDI usuallyprovides 90 days of disability benefits for recovery.

Some patients may have private disability through their employer in lieu of statedisability. If so, a transplant will qualify you to receive benefits just as it does withState Disability Insurance. The Kidney Team encourages patients to check withtheir employer’s human resources department or manager about exact benefits.

According to the Kidney Team, the following is an ideal scenario for a personto receive maximum Social Security Disability benefits and gain self-sufficiencyfollowing kidney transplantation:

Before kidney transplantation, a patient is on Social Security Disability becauseof dialysis necessity. After kidney transplantation, Medicare disability begins its36-month countdown.

Social Security disability begins its 12-month countdown. At one year post-transplant, the patient returns to work part-time, earning up to $500/month.Patient increases work hours over next two years so that at 36 months post-transplant when Medicare disability ends, he/she is working full-time and thusreceives full benefits from employer.

To help you move from depending on benefits to self-sufficiency, the federalgovernment provides work incentives. These incentives protect your entitlementto cash payments and/or Medicaid or Medicare protection until you can supportyourself. Also, if you attempt to work, and earn less than $500 per month, youcan still receive Social Security benefits.

Some tips for post-transplant employment include:

1) Look into vocational training programs

2) Look for a part-time job that offers private HMO insurance benefits

3) Volunteer your time at an institution that interests you; later look foremployment there

4) Return to school for education in a new field that interests you

5) Visit your local Department of Vocational Rehabilitation office to see if you qualify for benefits at their “Ticket to Work” program

6) If you’re a veteran, research the Department of Veteran’s Affairsoccupational rehabilitation program

State DisabilityInsurance

Private Disabilityfrom Employer

Ideal Scenario forPatients ReceivingSocial SecurityDisability

Work Incentives andEmployment Tips

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We want potential transplant recipients to make an informed decision abouttransplant that’s right for them. Evaluate your options. Consider the facts.Weigh our record of success with the record of others. Then choose theprogram with the best chance of success, expertise, convenience, personalizedcare and the ability to unite the family, physician and patients.

A big difference you will find with California Pacific’s Kidney and PancreasTransplant Program is the commitment to provide you, your doctor and familywith outstanding individual attention and care. Our philosophy is that transplan-tation is not an isolated surgical procedure, but part of a continuum of medicalcare for patients with end-stage renal disease. To best prepare yourself fortransplant, know what to expect both before the surgery and after.

For more information visit:

● www.disability benefits101.org-Information on Working with aDisability in California and “Ticket to Work Program”

● www.dor.ca.gov-California’s Department of Rehabilitation

● www.transplantliving.org/beforethetransplant/finance/care.aspxFinancial Planning for Transplant

● www.kidney.org-Publication on “Working with Kidney Disease”

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Making Your Choice About Transplant

Kidney and Pancreas Transplant Program2340 Clay Street, 4th FloorSan Francisco, CA 94115Telephone: 415-600-1000Toll Free 1-877-4-CPMC-TX (1-877-427-6289)www.cpmc.org/kidney

Copyright©2007 California Pacific Medical Center. All rights reserved. TRANKID-evalbook-2007