Information for Living Kidney Donors

The Transplant Institute at Beth Israel Deaconess Medical Center encourages living kidney donor transplantation for several reasons:

• Kidneys from living donors have a better long-term survival rate than kidneys from deceased donors
• Kidneys from living doors usually start working immediately in the operating room
• Living kidney donation can often help the recipient avoid having to start dialysis by having a “preemptive transplant”
• A living donor kidney transplant is scheduled and planned for, so the surgery takes place at a time most convenient for the donor and the recipient.

Our Living Donor team will discuss in detail the benefits and risks of living kidney donation during the evaluation. If at any time you feel uneasy, we’ll stop the process.

There are many different types of living donors. Optimal donors have excellent general medical and emotional health and volunteer to donate free of coercion, pressure or financial gain. Living kidney donors can be immediate or extended family members, friends, co-workers, neighbors or any other type of relationship. Some donors are non-directed donors (sometimes called altruistic or good Samaritan donors) who do not know the recipient or donate anonymously. While many people are willing to be living donors, not everyone meets the criteria necessary to participate in living donation. Donors must be evaluated carefully in order to avoid unwanted medical or psychosocial outcomes.

Generally, a donor must:

• Be genuinely willing to donate voluntarily
• Be in good physical and mental health
• Ideally have a body mass index (BMI) ≤ 30 (BMI between 30-35 will be evaluated on a case by case basis)
• Be over 21 years old (rare exceptions are made for those between 18-21 on a case by case basis)
• Be willing to commit to the physical, emotional and financial challenges of the donation evaluation process, surgery and recovery.
• Have adequate social supports to help them during the recovery period.
• Agree to smoking cessation for at least 8 weeks prior to surgery.

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.

Donors who are incompatible with their recipients can still undergo evaluation and potentially donate via kidney exchange. Donors and recipients with incompatible blood types can be entered into United Network of Organ Sharing (UNOS) Kidney Paired Donation (KPD) program

If you are interested in living kidney donation, you should begin by completing the online Kidney Donor Intake Form. This does not commit you to becoming a living kidney donor or even to an evaluation for living donation. A donor nurse coordinator will review the information that you submit and contact you to further discuss your individual circumstances and health history. He or she will ask you a series of health questions over the phone and advise you about whether you can be evaluated as a potential living kidney donor.

Kidney Donor Intake Form

Donating a kidney to a person in need – be it a loved one, friend or stranger – is a wonderful and courageous gift. It is also a very personal decision that only the potential donor can make.

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, doctors, social workers, psychologists, independent donor advocate 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.

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 from donating, including an improved quality of life and positive feelings about having tried to help someone in need.

Lifestyle Impact

People who donate kidneys can lead normal, active lives after recovering from surgery without any special restrictions. The body can function well with only one kidney, assuming all the testing done before donation show that the donor is healthy and has two normal kidneys. A donor does not have to follow a special diet or take special medicines once the recovery is complete.

An Independent Living Donor Advocate (ILDA) sees all prospective donors. This is a member of the living donor team who is responsible for advocating for your best interests as a potential living kidney donor. The ILDA does not have regular involvement with transplant recipient care.

She/he will:

• Review your understanding of living kidney donation process
• Help you understand the benefits and risks of living kidney donation
• Respond to any questions or concerns
• Promotes and protects the best interests of the potential living donor
• Confirm that you continue to be voluntarily willing to donate
• Provide an opportunity for you to opt out of the process in a way that is confidential and without consequence

The Independent Living Donor Advocates at BIDMC are:

• Kristen DeVoe, LICSW, CCTSW (617) 632-9718
• Jim Rodrigue, PhD

Living donors are carefully evaluated by a multidisciplinary team at the BIDMC Transplant Institute. The purpose of the evaluation is to ensure that potential donors are suitable from a medical, surgical and psychosocial standpoint.

The donor evaluation is a comprehensive assessment to determine if it is safe for a presumably healthy potential living donor to undergo elective major surgery which offers them no clinical benefit.  All donor decisions are made in their best interests, even if declining a donor results in the intended recipient not being able to benefit from living donor kidney transplant.

The evaluation begins with a potential living kidney donor completing the online questionnaire.

All charges for the donor evaluation are billed to the recipient’s insurance.

The outpatient evaluation process includes a number of different tests and consults, including:

• Blood and urine tests (CBC, PT/PTT, comprehensive blood chemistry panel, cholesterol, serologies (hepatitis, HIV, etc), blood type, cross match, additional tests as required)
• A 24 hour urine collection to evaluate kidney function
• Consult with the nephrologist (kidney doctor)
• Meeting with the transplant nurse coordinator
• Consult with the living donor social worker
• A chest X-ray to evaluate the lungs
• Electrocardiogram (EKG or ECG) to evaluate the heart
• Spiral Computed Tomography (CT) scan to determine any abnormalities in the kidneys or the blood vessels that lead to them
• A possible glucose tolerance test if you are overweight or have a family history of diabetes
• Consult with the transplant surgeon
• Meeting with the Independent Living Donor Advocate (ILDA)

All personal and health information concerning the donor is kept in strict confidence and will not be given to the potential recipient or any third parties.

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
• 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 Medical Center 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.

In the Hospital

• The average inpatient hospital stay for the donor is 2-3 days.
• You will recover on Farr 10, the inpatient Transplant Unit. The nurses and staff there will encourage you to get out of bed to walk and move around as much as possible.
• You will experience pain at your incision site; the degree of discomfort varies from one person to the next and is managed with medications.
• During your hospital stay (and at your follow up visits) you will have blood and urine tests to monitor your remaining kidney’s function.
• Every person recovers from surgery at a different pace but typically recovery can take from 4-6 weeks.
• You may not lift anything heavier than 10 pounds for the first 6 weeks after your surgery.
• You should not drive until you have stopped your narcotic pain medication. For many donors this is usually about two weeks after surgery.
• You may find that you tire easily for the first few weeks.
• Avoid abdominal exercises for the first 6 weeks and until cleared by your surgeon.
• Female patients should avoid pregnancy for the first year after donation.
• You will have regular follow up appointments at the following intervals after donation:
  • 1 week
  • 6 weeks
  • 6 months
  • 1 year
  • 2 years

What are the Benefits of Living Kidney Donor Transplant?

• Living donor transplant can help improve the lives of people with renal disease and
• Living kidney donors can feel good knowing that they have a positive impact on another person’s life.
• Living kidney donors and transplant recipients can often schedule surgery at a time that works for both people.
• Recipients who receive a living donor kidney transplant typically have improved long-term outcomes and quicker recovery times.

What are the Risks of Living Kidney Donation Surgery?

The risk of complications from kidney donation surgery is low. Nationwide, the risk of death from donation is very low. On average there are three deaths for every 10,000 living donor surgeries performed. We have not had any deaths from living donor surgery at BIDMC.

Possible complications for living donor surgery are very similar to possible complications of any general abdominal surgery. These include, but are not limited to:

• Pain
• Bleeding
• Wound infection
• Incisional hernia
• Pneumonia
• Allergic reactions
• Injury to abdominal organs
• Blood clots
• Nerve injury
• Conversion to open nephrectomy
• In rare instances, death
• Possible psychosocial risks, such as:
  • depression
  • generalized anxiety
  • possible feelings of guilt

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 and questions are:

Do I have to be a blood relative to donate?
The recipient does not need to have a blood relationship to someone to receive a kidney transplant from them.

Do I need to live in Massachusetts to be a living donor?
While living kidney donor evaluations need to be performed at BIDMC, out of town donors will be considered. Some donors can receive travel assistance from the National Living Donor Assistance Center and your social worker will review this with you to help determine eligibility.

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.

Will I need to take medication for the rest of my life after donation?
Living donors do not require lifelong medications.

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 the Donor Team update the recipient about my progress in the donor evaluation?
The donor evaluation process is confidential. Only the donor can share information with the recipient.  The Donor Team is not able to speak directly to the recipient.

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 evaluation, surgery and follow up costs are billed to the recipient’s insurance. 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 Independent Living Donor Advocate

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.

Will my lifestyle be limited long term after kidney donation?
After recovery from surgery, donors can live a normal life without limitations on their activity.

Can I have children after living kidney donation?
Female donors are able to have healthy pregnancies after donation. It is recommended that pregnancy be postponed for 1 year after donation.

How many people should self-refer for a consideration as a living kidney donor?
Anyone interested in considering living donation is encouraged to complete the online questionnaire or call the donor coordinator to learn about the donation process and complete a health history.  The Donor Team will review all donor candidates to determine who is best suited to complete the donor evaluation.