Please do not hesitate to ask your questions—however trivial they may seem to you. Every step of the way, your Transplant Coordinator will be available by telephone to answer any questions—and there is no such thing as a "silly" or "dumb" question. Please feel free to ask any questions, at any time, for any reason. We are here to help you.
Your Transplant Coordinator is available if you have any questions or concerns, and you may, of course, contact any member of the Kidney Transplant Team at any time with your questions.
The staff at the Kidney Transplant Center will answer all calls between 9 a.m. and 4 p.m., Monday through Friday, except holidays. The Transplant Coordinators will return these calls at their earliest convenience, usually the same day that you call. The Transplant Office number is 610-619-8420. Leave your name and telephone number where you can be reached. Try to be as specific as possible when you leave your message. Your call will be returned during the next business day. If you need to speak to a Transplant Coordinator during weekends, holidays or after hours, ask the answering service to page the Coordinator, who will return your call. If you have call block, please remember to remove it when expecting a call from our staff.
In the event of a life-threatening emergency, such as chest pain, coma, breathing problems, or bleeding, call 911 and they will take you to the nearest hospital emergency room. You and your family should always ask the physicians in the emergency department to call the Crozer-Keystone Kidney Transplant Center, but DO NOT try to drive to Crozer-Keystone in an emergency. Call 911.
Does the Kidney Transplant Center at Crozer-Keystone perform living donor transplants?
Absolutely. In fact, living donor transplants are the most recommended form of kidney transplant due to their high success rates.
What are the advantages of living donation?
Living donor kidney transplantation has been done successfully in the United States since the late 1950's. There are several advantages of a living-related donor or a living unrelated donor transplant over cadaveric donor transplants.
- The waiting time is shorter. (The average waiting time, depending on blood type for a cadaveric renal transplant, in this region is up to five years.) A living-related or a living-unrelated transplant can be scheduled for a time that is convenient for both the donor and the recipient.
- Kidneys transplanted from living donors tend to work right away
- Kidneys transplanted from living related and living unrelated donors last longer than kidneys transplanted from cadaveric donors
What is an Independent Living Donor Advocate (IDA)?
At Crozer-Keystone, the Living Donor Advocacy Service is made up of skilled professionals who have special knowledge about living donation, transplantation, medical ethics and informed consent. These professionals are not on The Kidney Transplant Program staff and are therefore in a unique position to be more objective about and supportive of you as a living donor. Their role is to protect the living donors from making decisions that they might not want to make or that they don’t fully understand.
You will be asked if you would like to speak with a Living Donor Advocate. If you do, a Living Donor Advocate will arrange to speak with you to discuss your unique circumstances and to make sure that you are well informed before you make any decisions. The Living Donor Advocate is your advocate and looks out for your best interests. He or she will avoid contact with your intended recipient so that there is no conflict of interest or accidental breach of confidentiality.
Your Living Donor Advocate’s responsibilities include making sure that:
- You understand what the doctors, nurses and other transplant team members are telling you about living donation,
- You are well informed about living donation so that if you do decide to consent to donate, that you do so after careful consideration and with good information.
- You are not experiencing any pressure or other inappropriate encouragement to donate.
- You can ask any question and get honest and clear answers with complete privacy and confidentiality.
Even though the Living Donor Advocate is not a member of the Kidney Transplant Team, he or she will provide the team with enough information about your case so that the team is confident that you are under the care of the advocate. Any information shared will be done so in your best interest and according to the patient information privacy laws of the Commonwealth of Pennsylvania.
Will the Living Donor Advocate still be available post-surgery/discharge?
Yes, of course; as will the entire transplant team. Please don’t hesitate to contact us with your questions—before or after surgery.
What is “Informed Consent?”
Informed Consent is a safeguard with the living donor, designed to protect the Living Donor’s patient rights and to make sure that the Living Donor understands the medical and psychological aspects of donation. If you decide to become a Living Donor, you will be required to read, understand and sign a Living Donor Consent form that confirms your understanding of the issues surrounding Live Donation.
As part of these protocols, you will be assigned an Independent Donor Advocate (IDA) who is independent of the transplant patient’s medical team. Your independent donor advocate looks out and advocates for your needs, rights, and interests and helps you understand the informed consent, evaluation, surgery and follow-up processes.
Your independent donor advocate will review the Informed Consent with you and answer any questions that you may have. In fact, don’t hesitate to ask your Independent Donor Advocate and any other Kidney Transplant Center staff any questions you have.
What are the qualifications for becoming a living donor?
While many people are willing to be living donors, not everyone has the qualities necessary to participate in living donation. Donors must be chosen carefully in order to avoid outcomes that are medically and psychologically unsatisfactory. If you are considering being a living organ donor, it’s important to educate yourself about the donation process, required testing, financial considerations, risks and recovery.
At a minimum, all potential living donors must be genuinely willing to donate, physically fit, in good general health, and free from high blood pressure, diabetes, cancer, kidney disease and heart disease. Individuals considered for living donation are usually between 18-60 years of age. Gender and race are not factors in determining a successful match. The living donor must first undergo a blood test to determine blood type compatibility with the recipient. If the donor and recipient have compatible blood types, the donor undergoes a medical history review and a complete physical examination.
A living donor can be:
- Family, friend, spouse or coworker;
- A directed altruistic donor (someone who donates a kidney to a specific person with whom he or she might be acquainted);
- A non-directed altruistic donor (someone who donates a kidney to a non-specific person on the waiting list);
- A donor through the Paired Donor Exchange program. This is a person who is willing to donate but is incompatible to the intended recipient.
What is the first step to becoming a living donor?
If you are interested in being a living donor, you should contact the Crozer-Keystone Medical Center Living Donor Kidney Program at 610-619-8420 to request a questionnaire. Once the questionnaire is completed, it is reviewed by a Transplant Coordinator and a determination is made regarding the Kidney/Donor Evaluation process.
The decision to become a living donor involves careful consideration and is a completely voluntary one. If you are considering being a living organ donor, it’s important to educate yourself about the donation process, required testing, financial considerations, risks and recovery. It is also important to know that you may change your mind at any time during the process. Your decision and reasons are kept confidential.
At Crozer-Keystone, an independent third party, called a “Patient Navigator,” can help you explore your interest in, and feelings about, being a living donor and to help you assess your emotional and financial preparedness for living donation. Our Patient Navigators are not on The Kidney Transplant Program Staff and are therefore in a unique position to be more objective about and supportive of you as a living donor. They are also very skilled and have extensive knowledge about living donation, transplantation, medical ethics and informed consent.
What if I live in a different part of the county from the person I am donating to?
You can still donate. Your transplant team can arrange for your donor assessment and kidney evaluation to take place at a transplant center near you if that is more convenient. Usually the donation will take place in the hospital where the person you are donating to is being cared for. If other arrangements are necessary, be sure to talk to the transplant team ahead of time.
What is the Evaluation Process like and how long does it take?
Each assessment is unique and the length of time can vary. In general, the Evaluation Process will take between two to six weeks to complete, including our evaluation of your test results.
As a potential living donor, you first undergo a blood test to determine blood type and immunologic compatibility with the recipient. If the donor and recipient have compatible blood types, the next step for the donor is a medical history review and a complete physical examination. In the examination, doctors may perform the following tests:
The potential living donor’s blood is drawn for tissue typing of the white blood cells. This test checks the tissue match between six codes on the potential living donor and recipient cells.
A blood test is done before the transplant to see if the potential recipient will react to the potential living donor’s organ. Although each test is an important part of kidney selection, the crossmatch is the most important test. To receive a kidney transplant, you must have a compatible crossmatch with the donor. If the crossmatch is "positive," then the donor and patient are incompatible because antibodies will immediately react against the donor’s cells and consequently cause immediate loss of the transplant. If the crossmatch is "negative," then the transplant may proceed. Crossmatching is routinely performed for kidney and pancreas transplants.
An antibody is a protein substance made by the body's immune system in response to an antigen (a foreign substance; for example, a transplanted organ, blood transfusion, virus, or pregnancy). Because the antibodies attack the transplanted organ, the antibody screen tests for panel reactive antibody (PRA), a number that desscribes how likely the candidate is to have antibodies to a donor. The white blood cells of the potential living donor and the serum of the recipient are mixed to see if there are antibodies in the recipient that react with the antigens of the donor.
Blood tests to screen for transmissible diseases
These tests determine if a potential living donor has HIV/AIDS, hepatitis and other transmissible diseases.
In the case of a kidney donation, urine samples are collected for 24 hours to assess the potential living donor’s kidney function.
A chest X-Ray and an electrocardiogram (EKG) are performed to screen the potential living donor for heart and lung disease. Depending upon the age and medical history of the potential living donor, other heart and lung tests may be needed.
These tests help physicians view the potentially donated organ, including its blood vessel supply. They can include a CAT scan, MRI, and arteriogram, a set of tests involves injecting a liquid that is visible under X-Ray into the blood vessels to view the organ to be donated.
These tests may include a colonoscopy, mammogram, prostate exam, and skin cancer screening. Your transplant team will determine the individual test needs, depending upon the age and medical history of the potential living donor.
Psychiatric and/or psychological evaluation
Both the potential living donor and the recipient undergo a psychiatric and/or psychological evaluation. These tests assess the mental health of the potential living donor, whether the donor feels pressure from others to donate, the donor’s ability to understand information and make an informed decision, and the donor’s daily life circumstances (such as the possible impact on a job, whether he/she would have any help while recovering from donation, and the donor’s family’s views about the donation).
For all female donors, a complete gynecological examination is required. For females 30 years and older, a mammogram is also required.
Final blood test
Usually completed within 48 hours of surgery, the last blood test is another crossmatch. It is the final comparison of the potential living donor’s blood cells and recipient's blood serum to make sure that the recipient has not created any antibodies that would attack the donated organ.
All of these test procedures are usually done on an outpatient basis, but in some cases, testing may require an overnight hospital stay.
What are the odds that my donated kidney will work...that it won't be rejected?
The odds are excellent. In fact, living kidney donation has the best track record of all forms of donation. Statistics from the Organ Procurement and Transplant Network show that the kidney donated from living donors is still functioning in 96% cases after one year, 81% of cases after five years, and 58% of cases after 10 years. Even so, you should be prepared mentally for the possibility of rejection.
What’s the difference between Laparoscopic Nephrectomy and Open Nephrectomy?
The surgical procedure itself is called a nephrectomy, the surgical removal of a kidney. This removal can be done by one of two ways: either a Laparoscopic Nephrectomy or an Open Nepherctomy.
Laparoscopic Donor Nephrectomy
Laparoscopic Nephrectomy, also known as "keyhole surgery," is a minimally invasive surgical procedure for obtaining a kidney from a living donor that can make the process easier.
In this procedure, the surgeon makes three or four small incisions close to the belly button. The kidney is removed through the central incision. Through one of the other openings, a special camera called a laparoscope is used to produce an inside view of the abdominal cavity. Surgeons use the laparoscope, which transmits a real-life picture of the internal organs to a video monitor, to guide them through the surgical procedure.
In comparison to the standard, Open Nephrectomy operation, Laparoscopic Nephrectomy results in smaller incisions and reduces recuperation time. Many donors are discharged from the hospital after two days and return to normal activity within four weeks.
Not all donors can undergo Laparoscopic Nephrectomy. You may not qualify for the procedure if:
- You have had multiple previous abdominal surgeries
- You are significantly overweight
- There is abnormal anatomy of the kidney
The Kidney Transplant Team, in conjunction with your doctor, will complete an evaluation to determine if laparoscopic donor nephrectomy is a possibility.
Open Nephrectomy has been the standard for the last 35 years and involves a five to seven inch incision on the side of the chest and upper abdomen. A surgical instrument called a retractor is usually needed to spread the ribs to gain access to the donor's kidney. Sometimes, it's necessary to remove part of a rib for better exposure. The operation typically lasts three hours, and the recovery in the hospital averages four to five days. Donors can usually return to normal activity within four to 12 weeks.
What happens on the day of surgery?
Both you and your recipient will be admitted to the hospital the morning of the scheduled procedure. All pre-operative testing will have been completed, so you and your recipient will proceed to the surgery center. Once there, the staff will start an intravenous (IV) line through which fluids are administered. You will then meet with your surgeon who will answer any remaining questions and will have you complete a consent form for the procedure.
A patient navigator will then escort you to the operating room when it is time for surgery. Shortly after arriving in the operating room, the anesthesiologist will give you sedation medicine through the IV, and a urinary catheter will be inserted into the bladder. Shortly thereafter, the surgery will begin.
What happens after the surgery?
Following surgery, you will wake up in the recovery room feeling groggy and a little uncomfortable. This is normal. You will be administered pain medication and closely monitored. You will also have a catheter that drains urine to a collecting bag in order to monitor your remaining kidney’s urine output. This catheter will remain in overnight and is usually removed the next day. Patients are encouraged to get out of bed, usually several hours following surgery, and walk around. It is not uncommon for donors to experience gas pain and bloating after the surgery, but walking should help alleviate your discomfort.
After discharge from the hospital, you will have a post-operative appointment with your surgeon 1-2 weeks after the surgery. Additional follow-up appointments will be scheduled 6 months, 1 year and 2 years after your donation. This will allow our team to monitor your kidney function. After your 2-year follow-up with the transplant center, we recommend annual check ups.
We you keep my family informed during and after my surgery?
Of course. You are asked to pick one person as the family spokesperson who will interact with the doctors and nurses about your condition while you are in surgery and after surgery when you are not able to communicate on your own. We will select the legal next of kin unless you indicate otherwise. Your family spokesperson can call the Kidney Transplant Center office for information and questions at 610-619-8420. Once you are out of the ICU and feeling better, our primary communication will be with you.
What should I expect in terms of recovering from the surgery?
Depending upon whether your surgery is a Laparoscopic Nepherctomy or an Open Nephrectomy, donors usually stay in the hospital between a few days and a week after surgery. Although recovery time varies, most kidney donors return to normal activities after four to six weeks, depending on the physical demands of your daily living and work tasks. You may not be able to drive for up to two weeks. You may have lifting restrictions for at least six weeks. It is important to talk to the Kidney Transplant Team about what to expect.
You will also have multiple follow-up office visits and laboratory tests with the Kidney Transplant Team up to a year after the surgery. Unless unexpected complications occur, you can then schedule regular visits with your family doctor. It’s important to attend all appointments to make sure that you are recovering appropriately. The information collected during the follow-up process is also critical to help future potential living donors to make informed decisions.
Your Independent Donor Advocate and Kidney Transplant Team are good sources for medical information about the living donor surgery and recovery process. Please talk with these professionals to understand what to expect, although the surgery and recovery process can differ among living donors.
How long will I be in hospital after donation?
Typically, donors usually stay in the hospital between a few days and a week after surgery. Your Independent Donor Advocate and Kidney Transplant Team are good sources for medical information about the living donor surgery and recovery process. Please talk with these professionals to understand what to expect, although the surgery and recovery process can differ among living donors.
Will I need to take any medication post surgery?
Yes, but only short-term. Painkillers will be necessary after the completion of the operation and during your recovery. You will not need any long-term medication as a result of your donation.
Will I need follow-up care?
Donors are typically seen by the transplant team between two and six weeks following the surgery for routine post-operative check-ups and care.
What are the potential post-surgical complications?
Living donation involves anesthesia and major surgery and their associated risks. As with any major operation, there are risks involved. For example, all patients experience some pain and discomfort after a surgical procedure. Although each situation is different, donors typically have a rapid and uneventful post-operative course. The first twenty-four hours after surgery, the donor is usually sleepy and tired, a natural reaction to surgery and anesthesia.
It is possible for kidney donors to develop infections or bleeding. Other surgical complications can include pain, infection, blood loss (requiring transfusions), blood clots, allergic reactions to anesthesia, pneumonia, injury to surrounding tissue or other organs and even death.
Please note that there has been no national systematic long-term data collection on the risks associated with living organ donation. Based upon limited information that is currently available, overall risks are considered to be low, but risks can differ among donors.
Some possible risks of kidney donation may include high blood pressure (hypertension); large amounts of protein in the urine; hernia; organ impairment or failure that leads to the need for dialysis or transplantation; and even death. There may be other medical risks for organ donation surgery since there are limited data about long-term complications and since each donor’s surgery and recovery experience is unique.
Are there any psychological risks
In addition to potential individual health concerns, it is possible for negative psychological consequences to result from living donation. Negative psychological symptoms are possible during the healing process and even years after the donation. For example, depression and anxiety after donation are common concerns and often attributed to the healing process of surgery, renewed family demands and an attention shift from the donor onto the recipient. As a result, you may have feelings of regret, resentment, or anger. Scarring or other aspects of the donation process could possibly contribute to problems with body image, and as with any transplant, there is also the risk that the recipient will have problems such as infection, rejection of the organ or even death. For a living donor, the news of such problems can be devastating. Treatment for these conditions can be lengthy, costly, and could possibly include the use of medications with their own risks and side effects.
The best source of information about expected donor outcomes is your Kidney Transplant Team and your Independent Donor Advocate. You should discuss these risks with these professionals. In addition, it’s important to take an active role in learning more about these potential surgical risks and long-term complications.
What are the positive aspects of living donation
On the positive side, the gift of an organ can save the life of a transplant candidate. The experience of providing this special gift to a person in need can serve as a very positive aspect of the donation. Some donors have reported positive emotional experiences, including feeling good about improving another person’s life. Transplants can greatly improve recipients’ health and quality of life, allowing them to return to normal activities. They can spend more time with family and friends, do more physical activities, and pursue interests and hobbies.
A living donor makes it possible to schedule the transplant at a time that is convenient for the donor and the transplant candidate. Better genetic matches between living donors and recipients may decrease the risk of organ rejection. In addition, kidneys from living donors usually work immediately in recipients in comparison to kidneys from deceased donors.
A living donor also removes a candidate from the national transplant waiting list, which currently includes more than 100,000 people. Based upon the most recent OPTN data, about 11% of kidney candidates added to the waiting list in 2007 received a kidney within one year. About a third of candidates added to the waiting list in 2003 received a kidney within five years. In 2008, more than 4,500 kidney transplant candidates died while waiting on the list.
Who pays for living donation?
The transplant recipient’s insurance will cover your general expenses as a donor, such as the evaluation, surgery, and limited follow-up tests and medical appointments. However, the recipient’s insurance may not cover follow-up services for you if medical problems occur from the donation. Your own insurance may not cover these expenses either. Additionally, the recipient’s insurance coverage usually does not include transportation, lodging, long distance phone calls, childcare, or lost wages.
Further, all transplant centers must turn in follow-up forms on living donors for two years after the donation surgery. Generally, anything that falls outside of the transplant center's donor evaluation is not covered. It is important to ask your transplant team about the costs follow-up care. These costs could include annual physicals, travel, lodging, lost wages and other non-medical expenses. Although it is against the law to pay a living donor for the organ, these costs may be covered by the recipient.
Be sure to check your specific insurance policy or ask the Kidney Transplant Center’s financial coordinator about concerns related to your specific circumstances. You may also want to learn more about the National Living Donor Assistance Program, which provides financial assistance to those who want to donate an organ.
You should talk about any financial concerns with the Kidney Transplant Center Team. They may have resources available for you. You might also consider contacting the National Living Donor Assistance Center at (703) 414-1600 or www.livingdonorassistance.org. This service may be able to provide financial help for travel, lodging, meals, and other non-medical expenses connected with your evaluation, surgery, and follow-up services (within 90 days after the donation).
Are there any expenses not covered?
Living donors are typically responsible for any time lost from work, unless their employer is able to provide paid leave or allow the donor to use short-term disability. Similarly, if you carry your own short-term disability insurance coverage, check with your insurance carrier prior to making your decision to become a living donor.
Additionally, employees of the Federal government receive 30 days paid leave for organ donation, in addition to their sick and annual leave (under HR 457), and many states have passed laws that make it easier to become a living donor by providing time off for state and/or private sector employees. Some states also offer tax deductions or credits for travel expenses and time away from work. And in other states, legislation has only been introduced, but not signed into law.
Also, talk with your Transplant Financial Coordinator about medical and disability insurance that provides coverage for problems that may occur from the donation. Some centers may provide these services free of charge, while others may offer them for purchase.
Are there any “Life After Donation” issues of which I should be aware?
While you will have multiple follow-up office visits and laboratory tests with the Kidney Transplant Team up to a year after the surgery, your life should return to normal fairly quickly. After the first year, unless unexpected complications occur, you will return to the care of your family doctor. It’s important to attend all appointments to make sure that you are recovering appropriately.
Although recovery time varies, most kidney donors return to normal activities after four to six weeks, depending on the physical demands of your daily living and work tasks. You may not be able to drive for up to two weeks. You may have lifting restrictions for at least six weeks. It is important to talk to the Kidney Transplant Team about what to expect.
Am I at greater risk of developing kidney failure?
No. Research indicates that living donors are at no statistically greater risk of developing kidney failure after donating than anyone else.
What if I donate, and need a kidney later?
This is something potential donors should discuss with the transplant team. Talk to your transplant team about any pre-existing condition or other factors that may put you at a higher risk of developing kidney disease, and consider this carefully before making a decision about donation. There have been some cases in which living donors needed a kidney later, but not necessarily as a result of the donation itself. It is considered a potential risk of donation, and consider this carefully before making a decision about donation. Presently, UNOS policy gives four extra points on the local (not national) waiting list to living donors.
Will donating a kidney shorten my lifespan?
No, the procedure itself will not shorten your lifespan. In fact, donors have typically lived longer than the average population because they are usually in very good health to begin with.
Will I have to change my lifestyle after donating?
No. A person 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, a donor can work, drive, exercise and participate in non-contact sports.
Will donating my kidney affect a future pregnancy or fathering a child?
Although studies have shown that kidney donation does not affect the completion of a safe pregnancy and childbirth, it is typically recommended to wait to become pregnant at least six months after surgery. Be sure to talk with your physician or gynecologist about your interest in donation and the effect it could have on future pregnancies.
Will I have trouble keeping or getting insurance after the donation?
The ability to obtain health and life insurance coverage after you have become a living donor is not restricted by most insurance companies, but your premiums could increase. However, there have been some instances in which living donors had difficulty changing insurance carriers after the donation, due to higher premiums or a pre-existing waiting period, and some donors have reported difficulty in getting, affording, or keeping health, disability, or life insurance. If you do not have health insurance, serving as a donor could be considered a pre-existing condition if you apply for insurance later.
It is important to talk to the financial counselor and social worker at the Kidney Transplant Center to find out if donation will affect your health or life insurance coverage. You should also talk with your insurance agent. If you work, talk with your employer about any existing leave policies before committing to living donation. Also, fully think about the financial impact on your family, especially if you and/or whoever serves as your caregiver during the donation recovery process may face lost wages and personal hardship.