Your Kidney Transplant Evaluation

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  • 1. Your Kidney Transplant Evaluation
  • 2. Contents 2 How the Kidney Works 3 Causes and Signs of Kidney Disease 4 Your Kidney Transplant Evaluation Getting on the Waiting List Blood Test Overview Becoming Active on the Waiting List 8 Kidney Donor Sources 9 The Waiting Period 10 Re-Evaluation 11 Transplant Surgery 12 Maintaining a Healthy Transplant 13 Resuming Activities After Transplant 15 What You Need to Know About Disability After Transplant 17 Making Your Choice About Transplant
  • 3. California Pacific’s Kidney Transplant Program started in 1969. Since this time, our team has performed kidney transplant surgery on more than 4,000 patients, thanks in part to the continuing generosity of organ donors. Our long and successful history has given our team the expertise needed 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 familiarize you with the role your kidney plays and what happens during your transplant evaluation, the following is a brief overview.
  • 4. How the Kidney Works The kidneys are two vital organs that perform many functions to keep the blood clean and chemically balanced. They are two fist-sized, bean shaped organs located near the middle of the back, just below the rib cage. Each day, the kidneys process approximately 200 quarts of blood, removing about two quarts of waste products and extra water from the body. The waste and extra water become urine. The urine flows to the bladder through tubes called ureters. Normal breakdown of tissues and food creates the waste in the blood. If the waste 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 million nephrons in each kidney. Inside each nephron is a tiny blood vessel called a glomerulus. The glomerulus intertwines with a tiny urine-collecting tube called a tubule. The tubules receive waste and chemicals the body will use. Medical Illustration Copyright©2007 Nucleus Medical Art, All rights reserved. www.nucleusinc.com 2
  • 5. The kidneys remove chemicals including sodium, phosphorus and potassium, and release them back into blood, returning them to the body. The kidneys regulate the body’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 bone marrow to make red blood cells ● Renin (REE-nin), which regulates blood pressure ● Calcitriol (kal-suh-TRY-ul), the form of vitamin D which helps maintain calcium for bones and for normal chemical balance in the body Causes and Signs of Kidney Disease Most kidney diseases affect the nephrons, causing them to lose their filtering capacity. Frequently, kidney diseases slowly destroy the nephrons without any signs of damage for a long period of time. Nearly all diseases impact both kidneys at the same time. Kidney disease can be autoimmune, infection-related, hereditary, or occur as a result of poisons or trauma. However, the two most common causes of kidney disease are diabetes and high blood pressure. People in the early stages of kidney disease usually have no symptoms. As the disease 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 for someone whose kidneys have stopped working. 3
  • 6. Your Kidney Transplant Evaluation Should you decide to pursue kidney transplantation, your transplant evaluation provides an opportunity for you to learn about kidney transplant surgery, to find out what to expect afterwards and to weigh the benefits and risks of transplanta- tion to help you make a well-informed decision. It is also an opportunity to get acquainted with our medical team. During evaluation, patients meet with a transplant physician, nurse coordinator and social worker. The visit begins with a slide show about the transplant process and includes a question and answer session. Transplant candidates are encouraged 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 blood typing and tissue typing). Because of the lengthy waiting list for kidney transplantation, California Pacific uses a two-step process so patients can accumulate waiting time while completing final tests necessary for their transplant. Step 1: Getting on the Waiting List 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 at evaluation need to authorize you for transplant. Usually, it takes about a month after your evaluation to be placed on the waiting list. 4
  • 7. Blood Test Overview 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 a donor of the same blood type. Patients interested in a living donor transplant need to find a donor with a compatible blood type (see table below). Bylaws of the United Network for Organ Sharing (UNOS) demand that ABO blood types be drawn twice for transplant listing. Recipient Compatible Donor A O, A B O, B AB O, A, B, AB O O Tissue Typing This test looks for the six histocompatibility antigens that will define the amount of “matching” between a recipient and donor. Although this test (and ABO blood typing) is necessary for placement on the transplant waiting list, its importance has diminished. This is because we now know that even transplants with minimal matching (say, only one of six antigens) can have excellent outcomes, thanks to new advances in immunosuppressive medications. Serologies These tests look for a patient’s past exposure to infections such as hepatitis, HIV, other viruses and syphilis. Panel Reactive Panel reactive antibodies show a patient’s level of sensitization to donor antigens. Antibodies (PRAs) 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 PRA level. PRA tests are performed when a patient is put on the waiting list and every one to three months while waiting. Because of the information this test provides, it can be used to counsel patients regarding how long they may wait for a transplant. It also helps the transplant team choose the appropriate anti- rejection medications. Cross-match This test establishes compatibility between a particular donor-recipient pair and, for patients with a living donor, is performed during the transplant work-up. A “negative” cross-match suggests that a donor and recipient are compatible and the transplant can proceed. If the cross-match is “positive,” the pair can participate in the Paired Donation Program. For patients with a deceased donor, this test occurs prior to transplant surgery, once a donor becomes available. 5
  • 8. Step 2: Becoming Active on the Waiting List Patients will receive a list of additional tests that need to be completed from the Kidney Team at the time of their evaluation visit. These tests may include anything from an x-ray to a sophisticated heart test. The Kidney Team will also notify your dialysis unit and primary care doctor of these tests, and you should work with your local doctor to complete them. Until all these additional tests are complete, a patient is on the waiting list but considered “inactive.” This means that you are gaining waiting time but cannot yet receive a transplant. Once all requested tests are completed and reviewed by California Pacific’s team, you are “activated.” This means you are ready for transplant. Even though most patients wait on the list for several years, some “active” patients receive a perfectly matched kidney well before their average waiting time passes. About 16% of transplants in the United States last year were perfect 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 him or 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 or weigh more than 20% over your ideal body weight. Patients who smoke will be referred to a smoking-cessation program and will undergo intermittent blood testing. 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 Tests If you have heart disease, the Kidney Team may require any or all of the following tests to learn more about your condition: Echocardiogram An echocardiogram is a type of ultrasound test that uses sound waves to (also called echo or produce an image of the heart. It takes about 15 minutes and shows doctors echocardiography) how well one’s heart chambers fill with blood and pump it to the rest of the body. An echocardiogram also helps evaluate heart size and valve function, and measures the amount of blood pumped out of the heart with each beat. 6
  • 9. EKG An EKG measures the electrical signals that control the rhythm of your heart- (also called beat. In this procedure, electrodes are attached to the skin on the chest, arms electrocardiogram) and legs, where they monitor the heart’s electrical activity. This activity is shown as line tracings on paper, which physicians analyze to view blood flow, inflam- mation, heart rhythm problems and signs of heart injury. Stress Test A stress test measures one’s heart function when it has to work harder than (different types include normal, such as during intense exercise. A stress test may be performed with exercise treadmill, the use of echocardiography or nuclear medicine techniques. A positive test stress echo and may indicate that your heart has inadequate blood flow when it has to work persantine thallium) harder than normal. Inadequate blood flow can lead to a heart attack. If any of the above tests indicate possible heart problems, the Kidney Team will work with you and your local doctor to determine if a coronary angiogram (dye study of the coronary arteries), angioplasty (opening of constricted arteries with a catheter) or cardiac surgery is necessary. Once the heart problem has been addressed, you will likely be able to receive a transplant. Other Tests The Kidney Team may request that you have one or more of the following exams. These help provide more details about your overall health. Pulmonary These tests measures how well your lungs work when you breathe in and out. Function Tests Patients with a history of smoking will need these tests. Routine Health Women should have PAP smears regularly and if over 40, should also have Screenings routine screening mammograms. Likewise, men over age 50 should have routine 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 shows your teeth and gums are healthy. While you are waiting for your transplant and following surgery you will need to continue having annual dental exams. This helps determine the health of one’s lungs and lower respiratory tract. Chest X-Ray 7
  • 10. Kidney Donor Sources Kidneys for transplantation can come from either living donors or the generous donation of organs by the family of a brain or cardiac death victim (deceased kidney donor). Specific types of donors include: Types of Kidney Transplants from a Deceased Donor Brain Dead Donor: Kidney donor with an irreversible head injury who was declared brain dead based on specific criteria. Brain dead donors remain on life support during organ recovery surgery. Donation after Cardiac Death Donor (DCD Donor): Kidney donor with a severe brain injury who does not meet the criteria for brain death but has no chance of survival. Donation after cardiac death donors are removed from life support prior to organ recovery surgery. Expanded Criteria Donor (ECD Donor): Any brain dead donor over age 60, or over age 50 with concurrent health problems. Types of Kidney Transplants from a Living Donor Living Related Donor: A living donor who is a healthy blood relative of the person awaiting transplant. This includes a sibling, parent, child, aunt, uncle, cousin, etc. Living Unrelated Donor: A living-unrelated donor is a healthy person who is emotionally close to, but not blood-related to the person awaiting transplant. This includes one’s spouse, in-law relatives and close friends. A living-unrelated donor can also include a compatible, anonymous donor matched by the Paired Donation program. Living donor transplantation is the most successful kidney transplant procedure. Typically, living donor transplants last longer than deceased donor transplants. 8
  • 11. The Waiting Period Once your name has been activated on the waiting list for a deceased donor kidney, you will need to be prepared and ready to respond should a suitable donor be found. We cannot predict exactly how long you will remain on the deceased 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 you and 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 ensure the process goes smoothly. To get organized for transplant, you need to: ● Keep your Transplant Team updated while you’re on the waiting list. Call your transplant coordinator at 415-600-1000 (toll-free 1-877-427-6289) or his/her direct 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 tests done after transplant (your dialysis unit will no longer do this) ● Identify your support system ● Identify your transportation system to/from San Francisco for your transplant and for three to six weeks following transplant when you are unable to drive ● Have members of your support system who will be accompanying you to San Francisco determine their transportation and lodging plan. They will need money for incidentals – gas, bridge tolls, parking, lodging and food. The Cathedral Hill Hotel is affiliated with California Pacific Medical Center and offers discounted rates to our patients and families. A shuttle runs between the 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 give them to the Kidney Team before you are discharged. 9
  • 12. Re-Evaluation When you get close to being called in for a transplant, we will contact you to schedule a re-evaluation appointment. At this appointment, a nurse practitioner or transplant doctor will check your medical status and draw lab work. You will also meet with our kidney transplant social worker. We want to ensure nothing will prevent you from receiving a transplant when called to the hospital. Insurance Insurance is a very important part of your transplant – not only for the surgery Coverage itself, but also for the medications that will keep your transplant functioning. Transplant medications can cost as much as $5000 per month, so insurance coverage is an essential part of your transplant planning. Patients are responsible for maintaining their insurance coverage both before and after transplant. Be sure to respond to any letters or requests for informa- tion you receive from your insurance company. Investigate your out-of-pocket costs and be aware that prescription coverage is your lifeline to medications. Understand and ask questions about your Medicare benefits. Remember that many working-age patients will qualify for Medicare for only 3 years post-transplant. The Kidney Team encourages you to start making education/vocation plans as soon as possible. If you have questions or concerns about your insurance coverage, don’t wait until you are out of medications or have lost coverage; contact your transplant center immediately. We understand how difficult this situation can be and we will do everything we can to assist you and direct you to resources. We have resources for vocational rehabilitation, and some patients may be able to qualify for medication assistance programs sponsored by drug companies. 10
  • 13. Transplant Surgery When a kidney becomes available for you, the “on-call” nurse coordinator will phone you to come to the hospital. After you arrive, the Kidney Team will do a final medical exam to make sure you are healthy enough to undergo surgery. After these preparations, you will be taken to the operating room where after receiving a general anesthetic, you will quickly fall asleep. During surgery, the surgeon places the donor kidney off to one side of your lower abdomen and sews the artery and vein of the transplanted kidney to blood vessels in your pelvis. The surgery typically takes between two to four hours. Following surgery, you will be moved to the Intensive Care Unit (ICU) for approximately 24 hours of close monitoring. The anesthesia will wear off about four hours after transplant, but you may feel groggy for a day or so. You will receive pain medication should you need it and the team will monitor your urine output. The next day, you will be transferred to the transplant floor for further recovery. You will begin to learn about your anti-rejection medications and will eat and walk as soon as possible. You should expect to spend five to seven days in the hospital. Before you go home, you will learn how to take new medicines that will help prevent rejection of your transplanted kidney, know the signs of infection or rejection, change the small dressings you may have, and understand general health guidelines. 11
  • 14. Maintaining a Healthy Transplant Usually, patients find that it takes about three months to adjust to a kidney transplant and new medications. Your energy level will start to build and you will notice the impact of having a healthy, functioning organ. While transplantation can offer a better quality of life, you must take an active role in your care to ensure your kidney remains healthy. You must remember to take your medications and have lab work done as prescribed, and come to all clinic visits. The following is an overview of what you can expect post-transplant. Medications: The immunosuppressive medications needed to maintain a healthy transplant The Key to a Healthy are a critical part of life post-transplant. You will leave the hospital with a Transplant 30-day supply of medications provided by an insurance-approved retail pharmacy. 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 your insurance coverage, you will be required to cover your share of cost or co-pay prior to discharge from the hospital. Medications are continuously monitored and adjusted, however, so after the first year, patients typically take between three to six kinds of pills. Lab and Clinic After transplant, regular lab tests help show the transplanted kidney’s function. Appointments: Patients need to have their blood drawn twice a week, with the results sent Monitoring Your to California Pacific for evaluation. At clinic visits, the team will review the Kidney’s Function results with the patient and make adjustments to medications if necessary. The frequency of lab tests will gradually decrease following transplant and ultimately, patients will have labs done once a month. The first clinic visit following transplant will be at California Pacific in San Francisco. If the physicians feel the patient is stable, subsequent clinic visits can be scheduled at an outreach site. 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 12
  • 15. Resuming Activities After Transplant Anxious to resume activities following transplant, many patients inquire about the timeline for their recovery. The following list describes different activities and recommendations about how and when to start. Because some people bounce back more quickly than others, it is important to listen to your body. Diet and Nutrition Kidney transplant recipients are advised to follow a low-fat, low-cholesterol diet following their transplant. If you have high blood pressure, the Kidney Team may ask you to follow a low-sodium diet as well. High potassium can be an issue after transplant, due to side effects of the anti-rejection medications. If this occurs, you will be asked to limit your potassium intake. Exercise and California Pacific’s Kidney Team recommends that patients begin light exercise Weight Management immediately after transplant. This involves walking – and lots of it. Although patients may not be in the best physical shape because of previous kidney failure, they need to push themselves, even if the exercise is tiring. Riding a stationary bike offers a good source of exercise and can be started several weeks after transplant. By six weeks post-transplant, patients can start virtually any activity within reason. However, any new activity should be started slowly. If you are overweight, the Kidney Team will encourage you to lose weight and become more active. Driving 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 not fatigued, no longer experiencing significant pain or taking medications that can cause drowsiness. The Kidney Team recommends that another adult driver accompany you on your first drive post-transplant. Work Transplant patients can consider returning to work after about six weeks, although this 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. 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. 13
  • 16. Sexual Activity Sexual activity may be resumed when the surgical staples are out, the incision has healed and when both the transplant patient and partner are agreeable. Patients may be more likely to conceive children after transplant and should be careful to use birth control and practice safe sex. Sun Exposure Because transplant recipients are more likely to develop skin cancer, we recommend that all patients guard their skin from the sun. This involves always wearing clothing that protects the skin from sun exposure (including a brimmed hat) and sunblock on all exposed areas. Being In Crowds Because transplant patients are taking medications that suppress their immune system, the concern about catching colds and other infections is real. However, we want our patients to enjoy their new life. The Kidney Team does not recommend avoiding all crowds. Common sense works well here. If someone close to you is sick, keep your distance and wash your hands frequently if there has been contact. If you have prolonged exposure to a sick person, consider wearing an anti-microbial mask. In general, thorough hand washing is the best way to prevent infections. Routine Health To best maintain your health following kidney transplantation, there are a number Screenings of important routine medical issues you need to address. Although these issues may not be directly related to your kidney transplant function, being aware of them 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 care healthcare 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) 14
  • 17. What You Need to Know About Disability After Transplant Because disability benefits change after transplantation, it is important to know your options in advance so you can plan accordingly. The Kidney Team encourages patients to understand their coverage prior to transplant and speak with a vocational counselor to make the process flow smoothly. An overview of disability coverage and options follows: Social Security The Social Security Administration has two disability programs, Social Security Coverage Disability Insurance (SSDI) and Supplemental Security Income (SSI) for individuals whose 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 have another disabling condition (blindness, stroke or severe amputation) or are over 65, your Social Security benefits end. The Kidney Team stresses that “mild side effects from medications are not enough to be considered for permanent disability in any situation.” Although Social Security benefits typically end 12 months post-transplant, you will continue to receive your Medicare health insurance benefits for 36 months post-transplant. Transplant recipients are strongly encouraged to go back to work at one year post-transplant (or earlier) to help prepare for when all disability benefits end. Patients can work part-time post-transplant, earning up to $500 per month without it affecting benefits. By 36 months post-trans- plant, the goal is for transplant recipients to be working full-time, so they will have full medical benefits to pay for medications and health care once Medicare disability ends. 15
  • 18. State Disability Most California workers who suffer a loss of wages when they are unable to Insurance work 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 usually provides 90 days of disability benefits for recovery. Private Disability Some patients may have private disability through their employer in lieu of state from Employer disability. If so, a transplant will qualify you to receive benefits just as it does with State Disability Insurance. The Kidney Team encourages patients to check with their employer’s human resources department or manager about exact benefits. Ideal Scenario for According to the Kidney Team, the following is an ideal scenario for a person Patients Receiving to receive maximum Social Security Disability benefits and gain self-sufficiency Social Security following kidney transplantation: Disability Before kidney transplantation, a patient is on Social Security Disability because of dialysis necessity. After kidney transplantation, Medicare disability begins its 36-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 thus receives full benefits from employer. Work Incentives and To help you move from depending on benefits to self-sufficiency, the federal Employment Tips government provides work incentives. These incentives protect your entitlement to cash payments and/or Medicaid or Medicare protection until you can support yourself. Also, if you attempt to work, and earn less than $500 per month, you can 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 for employment 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 Affairs occupational rehabilitation program 16
  • 19. For more information visit: ● www.disability benefits101.org-Information on Working with a Disability in California and “Ticket to Work Program” ● www.dor.ca.gov-California’s Department of Rehabilitation ● www.transplantliving.org/beforethetransplant/finance/care.aspx Financial Planning for Transplant ● www.kidney.org-Publication on “Working with Kidney Disease” Making Your Choice About Transplant We want potential transplant recipients to make an informed decision about transplant that’s right for them. Evaluate your options. Consider the facts. Weigh our record of success with the record of others. Then choose the program with the best chance of success, expertise, convenience, personalized care and the ability to unite the family, physician and patients. A big difference you will find with California Pacific’s Kidney and Pancreas Transplant Program is the commitment to provide you, your doctor and family with outstanding individual attention and care. Our philosophy is that transplan- tation is not an isolated surgical procedure, but part of a continuum of medical care for patients with end-stage renal disease. To best prepare yourself for transplant, know what to expect both before the surgery and after. 17
  • 20. Kidney and Pancreas Transplant Program 2340 Clay Street, 4th Floor San Francisco, CA 94115 Telephone: 415-600-1000 Toll 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