Living donation

If you have contacted the transplant hospital and remain interested in being a donor, the staff will begin the psychosocial and medical evaluation process. This serves two purposes: to protect you and to help ensure success of the transplant.

You will need to answer all the questions that are asked—this includes questions about behaviors that would place the recipient at increased risk of disease transmission. The transplant staff will ask about your financial situation and talk about who can give you physical help and emotional support throughout the donation process. You will be asked to fully describe your reasons for wanting to donate and how it might affect your lifestyle (such as employment and family relationships). Involving your loved ones in the educational part of the evaluation process can be helpful. They can learn about the donation surgery and recovery process and support you in your decision.

Here are examples of some of the tests potential donors will undergo as part of their evaluation. The results of your evaluation will be kept confidential under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the transplant candidate cannot access your personal information.

Psychosocial and/or psychological evaluation

This tool assesses your mental health; whether you feel pressure from others to donate; your ability to understand information and make an informed decision; and your daily life circumstances, such as the possible impact on your job, whether you would have any help while recovering from donation, and your family’s views about the donation.

Blood test

This is done to check blood type compatibility between you and the transplant candidate. It tests many things, including:

• Blood type compatibility
• Tissue typing: This blood test checks the tissue match between six codes on the transplant candidate’s and your white blood cells. The more matches that are found, the better the chance is that the transplant may be successful long-term.
• Crossmatching: This blood test determines how the transplant candidate will react to your organ. A “positive” crossmatch means that your organ will not match the candidate. A “negative” crossmatch means that your organ is compatible with the candidate.
• Blood tests to screen for transmissible diseases: These tests determine if you have HIV/AIDS, hepatitis, cancer, or other diseases. Some positive test results may need to be reported to local, state, or federal health authorities for public health reasons.

Urine testing

A 24-hour urine sample is collected to look at your kidney function.

Chest X-Ray and electrocardiogram (EKG)

These tests screen for heart and lung disease. Depending upon your age and medical history, other heart and lung tests may be needed.

Radiologic testing

These tests allow physicians to view the organ you want to donate, including its blood vessel supply. Tests can include a CAT scan, MRI, and arteriogram.

Gynecological examination

Female donors may need to receive a gynecological examination.

Cancer screening

Age and risk appropriate screening which may include a colonoscopy, prostate exam, mammogram, prostate exam, and skin cancer screening.

The short-term risk of living donation involves risks associated with anesthesia and major surgery. 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 little national systematic long-term data collection on the long-term risks associated with living organ donation. Based upon limited information that is currently available, overall risks are considered to be low. Risks differ among donors and according to the type of organ you donate.

Possible long-term risks of kidney donation may include high blood pressure (hypertension); reduced kidney function, which may be measured by large amounts of protein in the urine; hernia; organ impairment or failure that may lead to the need for dialysis or transplantation; or even death.

Possible risks of liver donation include wound infections, hernia, abdominal bleeding, bile leakage, intestinal problems including blockages and tears, organ impairment or failure that could require additional treatments, surgery, or liver transplantation, or even death.

There may be other medical risks for each type of organ donation surgery, since there are limited data about long-term complications and since each donor’s surgery and recovery experience is unique.

Negative psychological symptoms are possible during the healing process and even years after the donation. Your donated organ may not function in the recipient after it is transplanted. You and/or the transplant recipient may have medical problems from the surgery. Scarring or other aspects of the donation process could contribute to problems with body image. You may have feelings of regret, resentment, or anger. You may have symptoms of anxiety or depression. Treatment for these conditions can be lengthy, costly, and could include the use of medications with risks and side effects. Ask your hospital for most up-to-date information available on the risks associated with living donation.

Please talk with your Independent Donor Advocate (IDA) and other transplant hospital staff about the surgery and recovery process, which differs among living donors.

As a kidney donor, you can generally expect to stay in the hospital for two days after surgery. Most kidney donors resume normal activities after four to six weeks, depending on the physical demands of their 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. Many donors have reported experiencing fatigue for varied periods of time.

As a liver donor, you may stay in the hospital up to a week, or longer in some cases. The liver typically regrows to normal size in two months. Most liver donors return to work and normal activities in two months, although some may need more time.

Every transplant hospital is required to report living donor follow-up data at six months, 12 months and 24 months post donation. Talk with the staff at the transplant hospital about their follow-up procedures. Ask for detailed information about follow-up office visits, laboratory tests, and other possible requirements, and who will pay for follow-up. Attend all follow-up appointments. What we learn about donor outcomes can help future potential living donors make informed decisions.

To consider

• Think about how the donation process may affect your daily activities.
• Who will serve as your caregiver and support you during your recovery, especially if you have to travel a long distance for the surgery?
• How much time off will you need from work?
• How will this affect your care giving responsibilities such as caring for a child or an elderly relative?

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 trying to improve 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 again.

A living donation makes it possible to schedule the transplant at a convenient time for the donor and recipient. Better genetic matches between living donors and candidates may decrease the risk of organ rejection. In addition, kidneys from living donors usually work immediately.

Many kidney donor operations are now done with laparoscopic surgery. This form of surgery is less invasive than other procedures and involves smaller incisions. As a result, it can help to minimize recovery time for the donor.

A living donor removes a candidate from the national transplant waiting list.

The transplant recipient’s insurance will cover your medical expenses as a donor, such as the evaluation, surgery, and limited follow-up tests and medical appointments. However, the recipient’s insurance may or may not cover follow-up services for you if medical problems occur from the donation. Your own insurance may not cover these expenses either.

The recipient’s insurance coverage usually does not include transportation, lodging, long distance phone calls, childcare, or lost wages. A living donor cannot be paid for the donation because it is illegal under the National Organ Transplant Act of 1984. However, living donors may receive reimbursement for certain expenses related to the donation process.

You should talk about any financial concerns with the transplant hospital social worker or financial coordinator. They may have resources available for you. The National Living Donor Assistance Center, www.livingdonorassistance.org or (703) 414-1600, 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).

Transplant hospitals must submit follow-up data to UNOS on living donors for two years after the donation surgery. It is important to ask your transplant team about payment for follow-up care. The hospital and the recipient’s insurance may not cover these costs.

Most kidney transplant candidates have Medicare, which may provide coverage for donors who have donation-related complications. For more information, contact Medicare by phone at 1-800-MEDICARE or at www.medicare.gov. Talk with your transplant hospital about medical and disability insurance that covers problems that may occur from the donation. Some hospitals may provide these policies free of charge, while others may offer them for purchase.

Some donors have reported difficulty in getting, affording, or keeping health, disability, or life insurance. It is important that you talk with your own insurance carrier before making a decision about being a living donor. Your premiums could increase. If you do not have health insurance, serving as a donor could be considered a pre-existing condition if you apply for insurance later.

If you work, talk with your employer about leave policies before committing to living donation. Also, think carefully about the financial impact on your family, especially if you and/or your caregiver during the donation recovery process may face lost wages.