Information for Living Kidney Donors
Donating a kidney is an intensely personal decision. We hope that the information that follows will help you understand the process and make an informed decision.
Who Can Be a Living Donor?
There are many different types of living donors. A living donor can be a brother or sister, a spouse, other family member or relative, friend, co-worker and even a Good Samaritan (a compassionate stranger). Ideally any healthy person over age 18, who has a compatible blood type and compatible HLA tissue typing, may be considered as a possible donor. However, we now have the ability to perform transplants safely even if the blood types are not compatible using special treatments and medications. And there is no upper age limit to being a living donor at BIDMC. Many people assume that they are too old, but we have considered some potential donors over age 70. It is extremely important the potential donor is making the decision to be considered a live donor freely and without coercion.
Individuals with certain medical conditions may not be able to donate. For example, if you have heart disease, hepatitis C virus infection, diabetes or cancer, you will likely not be able to donate a kidney. However, if you are interested in being a living kidney donor, you should check with the Transplant Institute first. For instance, we sometimes hear from potential donors that they thought their age, weight, or past medical problem meant that they could not donate. But none of these things automatically rule out a person from being a living kidney donor. The best approach is to call the living donor nurse coordinator at 617-632-9700, who will ask you a series of health questions over the phone and advise you about whether you can be evaluated as a potential living donor.
The Gift of Life
Donating a kidney to a person in need - be it loved one, friend, or stranger - is a wonderful and courageous gift. Donors who elect to undergo this surgery receive no medical benefit, although the evaluation process may uncover hidden health problems that require treatment. Most living donors report a psychological benefit of donation, including improved quality of life and positive feelings about having tried to help someone in need.
People who donate kidneys can lead normal, active lives after recovering from surgery without any special restrictions. The body can function perfectly well with only one kidney, assuming all the testing done before donation show that the donor is healthy and has two normal kidneys.
The donor does not face an increased risk of kidney disease or other diseases related to the kidney, such as high blood pressure and diabetes. A donor does not have to follow a special diet or take special medicines once the recovery is complete. Being a living donor does not put the donor at increased risk for any future health problems.
Support for the Living Donor
The Transplant Institute supports living donors with education and guidance, explaining the risks and benefits of the surgical procedure, protecting their rights and privacy, and ensuring complete confidentiality. We have a dedicated donor nurse coordinator who manages care and services for our living donors.
A Personal Decision
If you are considering donating a kidney, it is important that you take some time to get as much information as you can about the benefits and risks. Transplant nurse coordinators, social workers, psychologist and the medical center's ethics support service are available to help. Be assured that any conversations you have with members of our staff about kidney donation will be held in the strictest confidence.
A living donor advocate also sees all prospective donors. This donor advocate does not have any involvement or connection with the transplant team. The advocate's primary role is to ensure that living donors have another person they can talk to about any concerns they may have.
Dedicated to Your Care Alone
Our staff that cares for you as a living donor does not participate in the medical care of the kidney recipient. In this way we ensure total dedication and focus on your care and needs as a living donor.
Simply talking with our staff does not mean that you must proceed with donation. If you wish, our staff can also put you in touch with someone who has donated a kidney so that you can hear about the experience firsthand. The most important thing is to make sure you feel comfortable with your decision to be evaluated for donation. Your choice affects your whole family, so we encourage you to discuss this decision with family as well.
Living Donor Evaluation
Living donors who decide to move forward with the evaluation process undergo a number of tests to be certain that removing a kidney will not jeopardize their health. There is no guarantee that someone who wishes to donate a kidney will be able to because of health, emotional, or social issues.
Potential donors meet with the Transplant Institute's nephrologist (a kidney doctor who specializes in transplantation). We ensure privacy for the potential donor and an objective opinion regarding his or her medical suitability to donate a kidney. The outpatient evaluation process includes a number of different tests, such as:
- Meeting with the transplant nurse coordinator and an evaluation with the transplant social worker or clinical psychologist
- Complete medical history and physical examination
- Chest X-ray to evaluate the lungs
- Electrocardiogram (EKG or ECG) to evaluate the heart
- Blood and urine tests (including blood and HLA type, and HIV testing)
- 24-hour urine collection to assess kidney function
- A possible glucose tolerance test if you are overweight or have a family history of diabetes
- Spiral Computed Tomography (CT) scan to determine any abnormalities in the kidneys or the blood vessels that lead to them
- Final crossmatch to check for antibodies within one week of transplant
- Transplant surgeon consult
Organ Procurement and Transplantation Network (OPTN) Kidney Paired Donation Program
There are other good ways to have a transplant even if your living donor and you are ABO incompatible or have a positive crossmatch. The Transplant Institute participates in two unique initiatives to expand living donation in this situation through the Organ Procurement and Transplantation Network (OPTN) Kidney Paired Donation Program.
The initiatives are:
Donation to List
A living donor donates to the list of patients waiting for a kidney, and the organ is allocated as if it were from a deceased donor. In return, the patient who was not able to receive his or her living donor's kidney now moves to the top of the wait list, and receives a kidney from the deceased donor pool.
Evaluating Emotional Health
Living donors work very closely with our behavioral health team. There are many complex emotions and feelings involved in the decision to donate an organ. We can help you and your support network gather information, weigh options and make an informed choice.
Living Donor Surgery
Surgery to remove a kidney is a major operation but new minimally invasive techniques and therapies have made the experience much easier to tolerate. Surgeons typically remove the kidney using smaller incisions and instruments, in a procedure that is called a laparoscopic nephrectomy. Performed under general anesthesia, this minimally invasive approach offers many benefits compared to traditional open surgery. With smaller incisions, patients experience less pain, recover more quickly, return sooner to their normal activities, and have less visible scarring.
In a laparoscopic nephrectomy, the surgeon
- Inserts a little tube connected to a camera through a 1/2-inch incision in the middle of the abdomen;
- Makes two more 1/2-inch incisions - usually on the same side as the donor kidney - and passes through additional instruments to prepare to remove the kidney; and
- Makes a 2 to 3-inch abdominal incision to actually remove the kidney.
Once the surgeon removes the kidney, it is taken to a nearby operating room and transplanted into the recipient. The donor's remaining kidney begins to take over the functioning of what was previously done by both kidneys.
Beth Israel Deaconess transplant surgeons are particularly skilled in laparoscopic technique. They perform laparoscopic nephrectomies in one of the medical center's advanced endosuites for minimally invasive surgery.
Rarely, the laparoscopic removal of the kidney must be converted to an "open" procedure where the surgeon has to make a larger midline incision to remove the kidney. This may be due to bleeding, difficult anatomy or safety concerns. On other occasions the surgeon may decide before surgery that a laparoscopic approach is not possible, usually because of unusual donor anatomy, and the surgeon must do an "open" nephrectomy through a "flank" incision.
The risk of complications from kidney donation surgery is low. Nationwide, the risk of death from donation is very low. On average, there are 3 deaths for every 10,000 living donor surgeries performed. We have not had any deaths from living donor surgery here at BIDMC.
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. During the evaluation process, all potential living donors are given a detailed explanation of each of these possibilities. We do everything possible to minimize these risks. If you experience one or more of these complications, our transplant team will work closely with you to treat and manage them.
Recovery from Surgery
Most donors remain in the hospital for 2 to 3 days. There is some pain associated with the surgery, but this is usually well controlled with medication. For the first few weeks after kidney donation surgery, patients may feel tired and emotionally drained. We advise frequent rest during this period and gradual increase in activities. Most donors use some oral pain medication for up to two weeks after surgery.
On average, living donors are able to return to work about four weeks after surgery. If you have a job that requires no (or very little) strenuous physical activity (like a desk job), you might be able to return to work in less than four weeks. If you have a more strenuous or physically demanding job (like roofing or construction), it might take you longer than four weeks before you can return to work. You and your surgeon will work together to determine how long you will need to be out of work.
Staying in Close Touch
We follow our living donors very closely. We expect you to return to the center at one and six weeks after surgery, six and 12 months after surgery, and then annually thereafter to closely monitor kidney function and overall health. These regular check-ups will not replace the care your primary care physician (PCP) provides.
We will be in close contact with your PCP, if you have one, through the donor evaluation and recovery process. If you are unable to return to the Transplant Institute for annual health check-ups, we may ask your PCP to perform routine tests of your kidney function and send those findings to us.
Living donors are not responsible for the medical costs of evaluation, surgery or hospitalization. The hospital funds the costs of your pre-transplant evaluation. The recipient's insurance covers the costs associated with the donor surgery and post-operative follow-up care. However, you will need some time away from work and you may lose pay as a result. Also there may be childcare expenses to consider, and travel and lodging away from home. Please talk with our financial coordinator or social worker if you have any questions or concerns.
Common Donor Concerns
It is entirely normal, and expected, for potential donors to have some concerns and worries about the evaluation, surgery and recovery. In our experience, the most common concerns are:
How much pain and discomfort will I experience?
There is pain associated with the surgery, but our donors say that this is well controlled with medication. In addition to the pain medication that you receive in the hospital, we will prescribe pain medication to have at home as well. For the first few weeks after kidney donation surgery, you may feel tired and emotionally drained.
How quickly can I return to work?
Most living donors return to work about four weeks after surgery. If you have a job that requires little or no strenuous physical activity (like a desk job), you might be able to return to work in less than four weeks. If you have a more strenuous or physically demanding job (like roofing or construction), it might take you longer than four weeks before you can return to work.
What if my kidney doesn't work in the recipient?
The vast majority of kidney transplants from living donors are successful, and the recipient lives a longer, healthier life through your generous gift. However, there is a small chance (1 percent at our center) that the transplant could fail in the first year. The kidney could fail because the recipient's immune system rejects the kidney or because of technical problems during surgery. In a very small number of cases, this can happen even when all of the medical tests showed that the donated kidney should work just fine. If this should happen, both of you will understandably feel very sad or depressed. You can take comfort in knowing that you gave generously and freely to improve a life, and that your relative or friend may be able to consider another transplant or dialysis.
Will my relationship with the recipient change after donation?
There are many emotions and feelings involved for you and the recipient. The recipient may worry about you, and may even feel guilty because you are having surgery. Also, you may feel hurt or angry if you believe the recipient is not taking proper care of themselves after the transplant. Research by our transplant psychologist shows that your relationship with the recipient is not likely to change that much, if at all, in the months and years after donation. If you are concerned about your relationship changing, talk with the recipient directly or ask the transplant psychologist or social worker to help.
Will donating a kidney cause any financial problems for my family?
The hospital funds the costs of your donor evaluation and the recipient's insurance covers the costs of the donor surgery and post-operative follow-up care. However, you will need some time away from work and you may lose pay as a result, especially if you do not have sick or vacation time. Some employers and businesses have a special program for living donors where you can take paid sick leave without using your own sick or vacation time. There may be other expenses to consider, such as childcare, travel and lodging. There is special national fund to help living donors with these costs, but there are certain qualifications that you must meet to be eligible to apply for these funds. Our financial coordinator or social worker can address your questions or concerns.
Is it possible to change my mind after going through the evaluation process?
Yes, of course. Your decision to donate a kidney must be one that you are completely comfortable with and that is made free of any pressure or coercion. You can decide not to donate at any time throughout the evaluation process. You can also ask us for more time to further consider your decision, and we will "pause" the evaluation process until you are ready to continue. If you decide you are not able to donate a kidney, talk with your living donor nurse coordinator.
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. And you may not be the best match for another loved one or friend. Our transplant psychologist or social worker can help you address these concerns and think through your decision.
We understand and respect the concerns that potential donors have as they consider this important decision. We make every effort to address these concerns with you and your family during the donor evaluation process.