KIDNEY TRANSPLANT RECIPIENT HANDBOOK

Transcription

1 KIDNEY TRANSPLANT RECIPIENT HANDBOOK P American Transplant Foundation th Street, Suite 2515 South Denver, CO (303) AmericanTransplantFoundation.org These materials are proprietary. Reproduction without American Transplant Foundation s approval is strictly prohibited.

2 - 2 - TABLE OF CONTENTS The Facts... 3 Frequently Asked Questions about Kidney Transplants for Donors and 6 Recipients.. Frequently Asked Questions -- Living Donors Most Common Myths and Concerns that Kidney Transplant Candidates 15 Have about Living Donation Checklist of Recommended Information about Living Kidney Donation. 18 Contact Us.. 21

3 - 3 - The Facts: There are two types of donation deceased (or cadaveric) organ donation and living organ donation. In general, a person waiting for a cadaveric organ has a longer wait time. Those who receive an organ from a living donor have a greater lifetime expectancy post transplant. Recipients of cadaveric organ transplants are selected based primarily on medical need, location and compatibility. All major religions in the United States support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. On average, 6,000 living donation surgeries occur each year. One in four donors is not biologically related to the recipient. In 2012, 5,617 people received the gift of life from a living kidney donor. Paired Kidney Exchange - patients without a compatible relative or friend no longer need to wait for a deceased donor to become available. Paired kidney exchange is an option for kidney recipient and donor pairs who are not blood and/or tissue-type compatible. With paired kidney exchange, kidneys are exchanged between two incompatible pairs to make two compatible living donor transplants. While it may not

4 - 4 - be possible to find a compatible donor-recipient pair for everyone, enrollment in this process can expand the opportunity to receive a transplant or donate a kidney. Living Donor Information: The prospective donor must have blood type compatibility, the best possible tissue type compatibility (antigen matching), and blood cross match compatibility as determined by lab tests of the donor and recipient. People can also become living donors by donating blood or bone marrow, and, in some instances, nerves or skin. Living donation does not change life expectancy of the donor, and after recovery from the surgery, most donors go on to live happy, healthy, normal, and active lives. For living kidney donors, the usual recovery time after the surgery is short. Hospitalization generally lasts between two and four days and donors can generally resume their normal home and working lives within two to six weeks. Studies have shown that donating a kidney does not affect a donor woman s ability to have children. However, it is important for doctors to know if a living donor plans on having children. This is recommended so that the doctors can prescribe the best medication for the patient s situation. The Process of Becoming a Living Donor: After deciding to become a living donor to someone, the first step is to contact the potential recipient s transplant center. The center might then ask you for consent to start a basic medical screening. They will then ask questions about your medical history to see if any issues would prevent you from being able to donate.

5 - 5 - An individual can also approach a transplant center and request to begin the process to become an altruistic living donor- someone who donates to a person they do not know. Next, a blood test will be given to see if you are compatible with the transplant candidate. If you are not compatible, other options include paired exchange, kidney waiting list exchange, blood type incompatible donation, or positive cross match donation. Ask your transplant center which options would be available to you. If a blood match is determined, a Living Donor Advocate (LDA) will make contact with you. Your LDA is only associated with your side of the donation process; they have no interaction with the transplant candidate or any medical staff working with the candidate. The LDA will be with you during the entire donation process. An LDA position is required for all transplant centers in the United States. The more honest you are with your LDA throughout the process, the better they can answer any of your questions. The position of an Independent Donor Advocate is to: Promote the best interests of the potential living donor Advocate for the rights of the potential donor Assist the potential donor in understanding information with the consent process, evaluation process, surgical procedure, medical and psychosocial risks, and will stress the importance of post-donation follow for the donor.

6 - 6 - After blood match determination and initial contact with an IDA, you will go through psychosocial and medical evaluations to ensure you can deal with the stress of the process, and that you are medically able to donate. Benefits of Living Donation: The transplant can be scheduled at a convenient time for the living donor and the transplant candidate. With genetic matches, there is a decreased risk of organ rejection. Kidneys from a living donor typically begin to function more immediately when place in the transplant recipient s body. Many kidney transplants are done laparoscopically -leaving the donor with smaller incisions. This can then minimize the length of recovery time for the donor Frequently Asked Questions about Kidney Transplants for Recipients and Donors Kidney Transplant Recipients: How does the waiting list work if I can t find a living donor match on my own? A person s spot on the waiting list is based on a points system which depends on the patient's medical urgency, blood, tissue and size match with the donor, time on the waiting list and proximity to the donor. Under certain circumstances, special allowances are made for children. For example, children under age 11 who need kidneys are automatically assigned additional points. Factors such as a patient's income, celebrity status, and race or ethnic background play no role in determining allocation of organs. Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word "list" is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor's blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the recipient "list," is different each time.

7 - 7 - The other major guiding principal in organ allocation is the proximity of the donor to the potential recipient, or in other words, local patients first. The country is divided into 11 geographic regions, each served by a federally-designated organ procurement organization (OPO), which is responsible for coordinating all organ donations. With the exception of perfectly matched kidneys and the most urgent liver patients, first priority goes to patients at transplant hospitals located in the region served by the OPO. Next in priority are patients in areas served by nearby OPOs; and finally, only if no patients in these communities can use the organ, it is offered to patients elsewhere in the U.S. How long will the transplant surgery be? The surgery generally takes up to 2-4 hours. What is recovery like for the recipient after transplant? Recovery depends on the recipient and how they feel after surgery. Usually, it will take 4-6 weeks to resume a normally functioning life, but little by little, you should do whatever you feel up to. You will probably have less energy because it takes time for the body to heal properly. Anti-rejection meds are key in helping your new kidney function correctly, which will ultimately make you feel better. What are my chances of surviving a kidney transplant? Depending on age and overall health, there is a 90 to 95% success rate after kidney transplant. Kidney transplants are the most successful type of organ transplant around the world. Are there any other options besides transplant? Dialysis is one of the only other options in place of a kidney transplant. Dialysis is a process that cleanses your blood. There are several different types of dialysis, depending on the patient s condition. Dialysis can only do 10-15% of the work of a functioning kidney. Unfortunately, dialysis treatments are hard on the body and can cause other medical problems like heart problems and infections. Transplant patients tend to live longer.

8 - 8 - What are the risks in kidney transplant surgery? Risks may include kidney rejection, infection, bleeding, blood clots, heart attack, stroke, damage to other organs, reaction to the anesthesia (which may include problems breathing), and failure of the donor kidney. What happens if my body rejects the kidney? There are different levels of rejection after transplant. After kidney transplantation, your body will reject the kidney to some extent because your body sees the new organ as a foreign object that it isn t used to. Anti-rejection medication is prescribed to help the new kidney function. It will take time for the body to fully accept your new kidney. A recipient can function quite well even with a small amount of rejection in the kidney. However, if the new kidney is failing, then a second or even third transplant may occur.

9 - 9 - FREQUENTLY ASKED QUESTIONS LIVING DONATION What is the process for determining if I am a candidate to donate? The first step is determining whether or not you are the same blood type as the recipient. The blood work is the only test that you will need to pay for out of your pocket. If you are not a match, you can still be a living donor through paired exchange programs please make sure to ask a transplant coordinator about this lifesaving option. After the blood work, there are psychological and physical tests administered that are used to determine if a donor is a good match (the recipient s insurance will pay for all additional tests and for the surgery). It is important that you are healthy and can withstand the surgery and recovery and that the specific organ you are donating is a good match for the recipient. Extremely overweight individuals or those with high blood pressure, diabetes, fibromyalgia or cancer are not eligible to donate. How do I begin the living donor evaluation process? If you are interested in being a living donor, you should contact the transplant hospital where the patient is listed to request a questionnaire. Once the questionnaire has been completed, it will be reviewed by a nurse coordinator to determine if you may proceed with initial blood testing. Once your blood type, antigen match (tissue typing), and cross match are known, the living donor nurse coordinator will discuss the results and the donation process with you. The nurse coordinator will answer any questions you may have, so that you can make an informed decision about proceeding with donation. This conversation is strictly confidential and is not shared with the recipient. If you decide to continue with donation, you must then complete a comprehensive evaluation. At what healthcare facilities is living donation available? Hospitals in Colorado include University of Colorado Hospital, Presbyterian/Saint Luke s Hospital, Porter Hospital, and Children s Hospital.

10 Can I donate to someone who is not related to me? Yes you can, although you will still need to go through the evaluation process. Altruistic kidney donation is a selfless act, and altruistic living donors are true Heroes. Can I talk to other living donors who are close to my age? Yes, American Transplant Foundation can match you with a certified transplant mentor they are not affiliated with any transplant center and are there to help you navigate this process and provide answers you need. Will donating a kidney affect my lifestyle? You can lead an active, normal life with only one kidney. Studies have shown that one kidney is sufficient to keep the body healthy. After recovering from surgery, you can work, drive, exercise and participate in sports, though contact sports are not recommended. You can continue in all types of occupations, including military duty. Also, being a donor does not impact a woman s ability to have a child. As a living donor, will I be at a significantly greater risk of developing a kidney disease? No. Latest research indicates that live donors have 99.10% chance of NOT developing an End Stage Renal Disease; general population is at 96.74% risk of NOT developing ESRD. What is life expectancy for a donor? Donating a kidney is major surgery but does not reduce your life expectancy. Interestingly, people who have donated a kidney outlive the average person. This fact has fueled an ongoing debate over why kidney donors live longer than expected. Some experts believe that it is simply a selection bias since only healthy people can be selected to be living donors. Others argue that the altruistic act of giving the gift of life, and the happiness and satisfaction that follows, has a positive impact, which leads to a healthier and longer life. What kinds of major lifestyle and financial changes exist? After fully recovering, donors can lead a healthy, active lifestyle. After donating, an individual can drive, work, and exercise. However, donors should try to avoid activities that

11 could cause direct injury to the remaining kidney. Contact sports like football, hockey, karate, and lacrosse are all examples of sports that should be avoided to protect your remaining kidney. It is also important to note some military services, police departments, and fire departments do not accept individuals with one kidney. What are the long-term effects of being a living donor? The risk of complications from kidney donation surgery is low less than 1%. Nationwide, the risk of death from donation is very low. On average, there are 3 deaths for every 10,000 living donor surgeries performed. Possible complications for living donor surgery are very similar to possible complications of any general surgery. These include: pain, bleeding, wound infection, incisional hernia, injury to abdominal organs and blood clots in your legs that can go to your lungs. You will have a scar from the donor operation and the size and location of the scar will depend on the type of operation you have. If your procedure is done laparoscopically, your scar will be quite thin, approximately three inches in length and may fade with time. During the evaluation process, all potential living donors are given a detailed explanation of each of these possibilities. Does insurance cover living donation? It is the recipient s insurance policy that covers the transplant and transplant-related followup. Any lost wages or other medical treatment post-transplant are the responsibility of the donor. However, assistance programs such as the American Transplant Foundation s Patient Assistance Program can provide some financial assistance to donors and recipients. What if I cannot afford to take time-off following the surgery? The American Transplant Foundation provides financial assistance to living donors in financial need (income restrictions apply). They will cover your mortgage/rent for the month following the surgery. Assistance with lodging and travel is also available through National Living Donor Assistance Center. Your transplant social worker will apply for these grants on your behalf. Should I save my kidney for one of my own children - what if they need a kidney transplant later in life? For some donors, it comes down to helping a relative or friend in need now, and trusting that others will come forward to give to a child or spouse in the future - should they even need a kidney. Many donors proceed confidently that someone presently in need of a kidney is far

12 more compelling than the unlikely hypothetical scenario of a close relative later being in need. And you may not be the best match for another loved one or friend. A transplant psychologist or a social worker can help you to address these concerns. Whether or not someone chooses to donate, potential transplant recipients often tell us they are grateful that their loved ones even considered the possibility. Here are some things to consider: Is there reason to believe your child or spouse will suffer from kidney failure in the future? Are there others in your family who could donate in the future if you chose to donate now? Is your blood type compatible with your child or spouse? That is, could you actually be a donor for them? What if I need a kidney transplant later in life myself? Although this is extremely rare that a living kidney donor s kidney fails, if some mishap should result in loss of kidney function in the remaining kidney, the United Network for Organ Sharing (UNOS) has established a policy that living kidney donors be placed closer to the top of the kidney transplant list. Instead of waiting for a transplant for years, you should only be on the list for a few months. Will I be able to have children after I donate a kidney? There is no evidence that donating a kidney impacts the ability to have children. Usually, doctors recommend that women wait one year before getting pregnant to allow the body time to heal after donating. Donors who become pregnant should notify their obstetrician or gynecologist that they have donated a kidney. What happens if I change my mind about donating halfway through the process? A potential donor will never be forced to donate. A doctor often carries the burden of stopping the process and informing the recipient. For example, the doctor may tell the recipient that the donor is no longer a good match. At the end of the day, it is the potential donor s decision whether or not they are comfortable donating. What is the donor surgery like? You will be admitted to the hospital the morning of surgery and you will go through a physical

13 examination, including blood work, chest X-ray, and EKG (this can also be done the day before). If all goes well, you will be approved for surgery. If you pass the physical exam, the doctor will administer IV fluids and answer any remaining questions. You will then be escorted to surgery and the anesthesiologist will sedate you. Once you are fully asleep, you will be given a breathing tube to help you breathe during surgery and a catheter will be placed into your bladder. The surgery then begins. How can I prepare for the surgery? It is important to have support systems in place before surgery. You ll need help caring for yourself for a week plus after going home. Having someone in place to help with meal planning, child and pet care, running errands, and other day to day activities require planning. How long will I need to stay in the hospital? The two types of kidney removal procedures, laparoscopic and non-laparoscopic, have very different recovery times. Laparoscopic kidney removal is less invasive and allows for discharge within two to four days after surgery. But most donors spend 1 to 3 days in the hospital following the operation. However, this varies from donor to donor. Some are ready to leave the hospital the day after surgery, some spend a week or more in the hospital. What is the pain like? The pain experienced after surgery varies from donor to donor because everyone has a different pain threshold. After surgery, medication will be prescribed to deal with the pain. What is recovery like? At first, the donor s activities will be limited. They should not lift anything weighing more than lbs for the first four weeks. They may feel tired for the first week or two after the surgery and may need frequent naps. In between naps, donors are encouraged to be active. Walking is an excellent example of exercise during this time. There may also be some swelling around the incision area and during the recovery period donors should plan to wear loose, comfortable clothes. When could I go back to work? Depending on your occupation you can typically return to work in two to three weeks. Nonlaparoscopic surgery has a longer recovery time, it varies for each donor. If working in a field

14 that requires heavy lifting or other physical demands, a longer recovery period may be required (usually 4-6 weeks). What happens if my donor kidney is rejected? Although the vast majority of transplants from living donors are successful, it is possible the new organ will be rejected. In this scenario, the transplant recipient will continue dialysis and either seek a new living donor or be placed on the transplant list. Post-transplant, what must I do to take care of my health? You will have check-ups with the transplant center to make sure that you are healing well after surgery. After recovery, you will return to the care of their regular physician. You won t need to take any specific medication as a living donor. For More Information: American Transplant Foundation: Living Donors Online: National Living Donor Assistance Center: UNOS: Books - On the List: Fixing America's Failing Organ Transplant System by Steve Farber and Harlan Abrahams; Shift Your Fate by Risa Simon.

15 Most Common Myths and Concerns that Kidney Transplant Candidates have about Living Donation Concern: The donor will feel badly if my body rejects the donated kidney Fact: Kidney transplants are the most successful organ transplants, with a 90-95% success rate. Living donor s kidney s generally last years, while deceased donor transplants last years. If the organ rejects, the recipient will continue dialysis and either seek a new living donor, or be placed on the transplant list. Myth: Donating a kidney is a dangerous procedure Fact: Most donors only spend 1-4 nights in the hospital, and are able to return to work in 2-3 weeks depending on their recover and the type of job they have. The risk of complications from kidney donation is low, although as with any major surgery there are risks involved Myth: Out-of-pocket expenses for the donor will be too high Fact: It is the recipient s insurance policy that covers the transplant and transplant-related follow-up. Lost wages and medical treatment post-transplant are NOT covered by recipient s insurance. American Transplant Foundation (ATF) can provide financial assistance to donors in need for lost wages. Concern: I don t want my living donor to face a kidney failure later in life. What if he he/she will need a transplant? Fact: Estimated risk of kidney failure at 15 years after donation is about 3 per 1,000. Live donors have lower rates of lifetime kidney failure than general population (0.9% vs. 3.26%), but 0.14% higher lifetime risk compared to healthy nondonors. Should a donor ever be in need of a kidney, which is extremely rare, the donor would be given priority on the waiting list.

16 Myth: Members of the transplant team will pressure someone to be a donor Fact: Donors are free to change their mind about donation at any time during the evaluation process. Donors will not be responsible for letting the recipient know if they choose to not donate. Myth: Donating a kidney reduces the donor s life expectancy Fact: Donating a kidney does not reduce live donor s life expectancy. Interestingly enough, people who have donated a kidney outlive the average person. Concern: I don t completely understand what the evaluation, surgery, and recovery are like for the donor Myth: No one will volunteer to be a donor Concern: I will feel guilty if someone donates Fact: Transplants centers offer all the information one needs to know about living donation. Support programs like ATF s 1+1= LIFE Mentorship Program helps connect recipients and donors with those who have already undergone the process. Fact: Since the first successful donation in 1954, over 50,000 people have become living donors, with an average of 6,000 happening annually. If your family members/friends are not a match, they can still save your life through paired exchange programs. Also, unrelated donors, or altruistic donors, are becoming more and more frequent. Fact: Living donors are true heroes. Most donors say that seeing their recipient s improved health after transplant more than outweighs the pain and inconvenience of donating. If you don t accept the Gift of Life that your loved ones are willing to give, they are very likely to feel guilty that they never had a chance to save your life.

17 Myth: My or my donor s religion might not support living donation Fact: All major religions in the U.S. support living and deceased organ donation. Concern: I don t feel comfortable approaching my loved ones and friends about living donation. I don t even know how to bring up the subject. Fact: It is very common for transplant patients to feel that way. ATF s volunteer transplant mentors can provide specific advice and guidance as well as help you to identify and train an advocate who will approach potential donors on your behalf. Myth: Surgery will affect the donor s ability to have children Concern: The surgery scars will be unattractive to the donor or his/her partner Fact: There is no evidence to support that kidney donation impacts the ability to have children. Donors should be open and upfront about their donation when consulting obstetricians or gynecologists. Fact: Depending on the type of surgery, scars can be as small as 3 inches long, and can fade with time. Myth: The donor needs to be a family member in order to be a match. Fact: A living donor doesn t need to be biologicallyrelated to the recipient. Donors usually need to be between the ages of 18 and early 60s. Donors must be willing to donate, have a blood type that is compatible with the recipient s (kidney swap is also an option), and not have diabetes, or high blood pressure.

18 Checklist of Recommended Information about Living Kidney Donation 1. General information about kidney failure and treatment: Function of kidney (dialysis does only 10-15% of the work of one functioning kidney) Dialysis and transplant: two main treatment options for patients with kidney failure Two types of dialysis: peritoneal dialysis and hemodialysis, dialysis can be performed at home or in a center. Peritoneal Dialysis is having dialysis treatment going through the abdomen, and hemodialysis is having dialysis treatment done through a port Benefits of transplantation before dialysis (or as soon as possible after dialysis) The two types of transplantation: deceased and living donation (on average, a kidney from a living donor lasts 5-10 years longer) ; types of living kidney donation (i.e. living related, altruistic) Transplantation costs the health care system less compared to dialysis (tx is much more cost efficient) Benefits of living kidney donation (decreased rejection, improved graft survival, convenience, no time on waiting list) Paired Exchange Living donation surgical techniques; laparoscopic procedure 2. Short-term medical risks to donor: Surgical complications Length of hospital stay (usually 1-4 nights), usually about a month of physical activity limitations The risk of death is about 0.06% (about 1 death for every 1,700 procedures)

19 Long-term medical risks to donor: A slightly increased risk of high blood pressure and kidney failure, but this increased risk is very small and only affects a low number of patients Should a donor ever be in need of a kidney, which is extremely rare, the donor would be given priority on the waiting list Importance of regular follow-up with a family physician 4. Psychological risks to donor: Psychological risks (i.e. depression, anxiety, body image) and risks to social relationships (i.e. interactions with recipient if transplant is unsuccessful, strained family relationships with family members if they are not supportive of your decision to donate) 5. Benefits to donor: Improved self-esteem and outlook on life Opportunity to see a positive change in recipient s condition, which can provide a deep joy and satisfaction 6. Risks to recipient: Risks of a major surgery, including death Risk of infection Chance transplant may not work Other health problems may arise from anti-rejection medications 7. Benefits to recipient: Compared with treatment with dialysis, better quality of life, and life expectancy Compared with deceased donor transplantation there is a decreased waiting time and longer life expectancy of the kidney A living donor kidney has a better chance of working normally right away because it does not spend much time outside of the body Kidney transplants are the most successful organ transplants worldwide, with a 90-95% success rate after surgery 8. Financial consideration: Expect time away from work (usually 2-3 weeks, longer if job is physically demanding) and the subsequent loss of income (financial assistance for low-income donors is available through ATF) Expenses because of travel, accommodations and childcare (assistance can be available)

20 Donors are not responsible for the medical costs of the evaluation (except for initial blood test), surgery, or hospitalization. These costs are covered by Medicare and/or the recipient s insurance ATF s Patient Assistance Program is a great resource! 9. Common Donor Concerns Donating a kidney is a dangerous procedure Donating a kidney will reduce my life expectancy Donating a kidney will change my lifestyle The donor needs to be a family member in order for them to be a match 10. Common Recipients Concerns The donor will feel badly if my body rejects the donated kidney The donor surgery and recovery will be too painful for donor Out-of-pocket expenses for the donor will be too high The donor might have long-term health problems because of donation I might waste a new kidney by not taking care of my health 11. Donation is a voluntary process: Donors are free to change their mind about donation at any time during the evaluation process Both donor and recipient wishes must be respected There should be no pressure from physicians, family, friends, or recipient to donate 12. Donor evaluation process: Evaluation can last between 2-6 months. If there is any medical or psychological reason why the donation should not happen, the transplant team will stop the transplant Donor needs to be healthy; certain conditions are contraindications (such as diabetes, history of cancer) Necessary blood tests, renal ultrasound, blood group testing, crossmatching, etc. The transplant center uses an independent medical team, known as an Independent Donor Advocate team or IDA, including a therapist, to evaluate donors to ensure that they will not be medically harmed or pressured into donating Possibility of discovering previously unknown underlying health conditions or reportable transmissible diseases throughout the evaluation

21 Donor eligibility criteria Minimum age - 18 Only healthy individuals are eligible to donate. A living donor will not be able to donate if he or she has a serious medical problem or any condition that affects the kidneys such as high blood pressure or diabetes 14. Helpful resources for transplant patients and living donors ATF website Colorado Transplant Centers - living kidney donor advocates contact information: Porter Transplant Presbyterian/St. Luke s University of Colorado Hospital Please contact your mentor or American Transplant Foundation for any questions your might have. American Transplant Foundation support@americantransplantfoundation.org This program is possible thanks to the generosity of our donors, including: These materials are proprietary. Reproduction without American Transplant Foundation s approval is strictly prohibited.