Education about Living Kidney Donation

Overview

Our commitment to you is to give you the facts, with no spin. As donors ourselves, we will give you insights that can only come from actually donating a kidney. Donating a kidney comes with risks which we will elaborate on in this section. If you are not comfortable with these risks or if you are looking to be compensated, we encourage you to not pursue kidney donation.

Since 1954, when the first successful living donor transplant took place in Boston, living donors have been giving the gift of life and making a difference. This tradition has allowed thousands of people facing kidney failure to live longer, healthier lives, free from the challenging routine of dialysis. Donating a kidney not only helps the person who receives the living donor kidney but also shortens the deceased donor wait list, helping others get a deceased donor kidney sooner. There are currently over 100,000 people in the United States on the deceased donor wait list. Typical wait times for a deceased donor are 3 to 10 years.

Types of Donation

There are four types of living kidney donation: direct donation, paired exchange donation, Good Samaritan donation, and advanced donation.

Direct Donation

With direct donation, the donor generally knows the recipient and donates directly to them. If the donor is compatible, the donor's kidney can be transplanted directly into the recipient. One problem with direct donation is that direct donors are often incompatible or poorly compatible with their intended recipients - this means they are not the right blood type or do not pass a cross match test with the intended recipient. However, a donor can still help their intended recipient get a transplant if they are incompatible by participating in a paired exchange. Below is an illustration of the three hurdles that direct donors must clear before they can donate their kidney in a direct donation.

Healthy

Hurdle #1

Blood Compatible

Hurdle #2

Pass Cross Match

Hurdle #3

Paired Exchange Donation

In a paired exchange, a donor will donate their kidney to another recipient in exchange for a compatible kidney for their loved one. In the example below, the first pair, a mother and her son are incompatible. The second pair, a husband and his wife are also incompatible. In this exchange, the mother donates to the wife of the second pair and the husband donates to the son in the first pair. Often compatible pairs enter into a paired exchange to get a better matched donor.

Advanced Donation Program

The Advanced Donation Program (ADP) is a kidney paired exchange separated in time. There are two types of ADP cases 1) Short term cases, where the intended recipient is on dialysis or is in imminent need of a kidney transplant and 2) Voucher cases, where the intended recipient is currently not in need of a kidney transplant and may never need a transplant. Both types of ADP cases allow donors to donate their kidney before their intended recipient receives a kidney. Some ADP donors have donated just a few months before their intended recipient was transplanted (short term cases). Some ADP donors have donated 20+ years before their intended recipient is expected to need a transplant (voucher cases) with the hope that their intended recipient will never need a transplant.

Good Samaritan Donation

With Good Samaritan donation, the donor is giving to a stranger which initiates a chain of transplants. Chains are a way for one Good Samaritan donor (aka Non Directed Donor) to help many patients get transplanted. Chains are also revolutionizing the paired exchange process by facilitating better donor-recipient matches including some six antigen matches, which is important because a great match allows the transplanted kidney to last longer.

Many Good Samaritan donors choose to start chains because it is a way to help more than one person suffering from kidney failure. One chain typically facilitates anywhere from 2 to 30 transplants.

Donor Risks

Life Expectancy

Donating a kidney is major surgery but has not been shown to reduce the donor's life expectancy. Interestingly, people who have donated a kidney outlive the average person. (Reference: Fehrman-Ekholm, Ingela 2,3; Transplantation, 64(7): 976-978, October 15, 1997.) 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 and leads to a healthier and longer life.

Surgical Complications

Donors face the possibility of post-operative complications such as bleeding, wound infection, fever, etc. Most of the post-operative complications are generally short-term and can be addressed with quality medical care.

Recovery Time

The two types of kidney removal procedures, laparoscopic and non-laparoscopic, have very different recovery times. Laparoscopic kidney removal is less invasive and allows the donor to be discharged 1-2 days after surgery, allowing the donor to return to work in one to four weeks depending on the donor's occupation. Non-laparoscopic surgery has a longer recovery time. NKR member centers generally utilize the laparoscopic procedure.

Mortality Rate

Although more than 5,000 living donors in the United States donate their kidneys every year, the procedure is not without risks. The donor surgery has a 3 in 10,000 mortality rate which means that on average 3 donors die for every 10,000 living donor surgeries. As a point comparison, according to the U.S. Census Bureau, the 2007 infant mortality rate in the United States is 64 in 10,000 indicating that it is about 20 times riskier to be born in the United States than to donate a kidney. We believe that some of the donor deaths in the United States were avoidable and potential donors will reduce the mortality risk if they have the surgery done at a Donor Care Network center of excellence.

Long Term Outcomes

Although kidney donation does not appear to impact life expectancy, research indicates that donating a kidney increases the risk of kidney failure over the donor’s life-time. In a 2015 paper published in the Journal of the American Society of Nephrology; lifetime risk of kidney failure for the average person was 326 in 10,000 (about 1 in 30), 90 in 10,000 (about 1 in 110) for those who donated a kidney and 14 in 10,000 (about 1 in 700) for healthy non-donors. The reason that kidney donors have a lower risk of kidney failure compared to the general population is that kidney donors are much healthier than the average person. When donors and healthy non-donors are compared, there is a kidney failure risk increase of 76 in 10,000 from donating a kidney.

The following are informative papers related to long term risks of donating a kidney:

Journal of the American Society of Nephrology - 2015
Reassessing Medical Risk in Living Kidney Donors

Journal of the American Medical Association - 2014
Risk of End-Stage Renal Disease Following Live Kidney Donation

New England Journal of Medicine - 2009
Long-Term Consequences of Kidney Donation

Donor Tips

If you are interested in donating, complete the online screening. It should take only 5 minutes. This will let you know if you have any health issue that will prevent you from donating.

If you are over 50 you will need to have a current colonoscopy (within the last 5 years). Try to get the colonoscopy done before you start the donor evaluation process.

If you live a long distance from the transplant center that you may donate at, ask them if you can complete the donor work-up locally so that you can avoid the cost and time associated with the travel.

Prior to surgery, ask your surgeon for IV pain medication for the first 12 – 24 hours after surgery so that you can sleep/rest without worrying about asking for oral pain medication every 4 hours. After the first 12-24 hours, switch over to oral pain medications so that you can have the IV removed as soon as possible (most centers want you to pass gas or do a bowel movement before they remove the IV).

After surgery you may experience pain from the gas that used during surgery to expand the abdominal cavity. The best way to reduce this gas related pain is to walk, so try to walk as much as possible after the surgery.

Many donors experience back pain after surgery in the form of muscle spasms. This is from the position that you are placed in during the surgery. If you have this kind of pain, ask the nurse or your caretaker to massage the area in your back that is sore. If you are offered a heat pad for back pain, ask for a massage.

Myths about Living Donation

By Ilana Silver Levine, LMSW and Marian Charlton, RN, CCTC

The purpose of kidney transplantation is to give a healthy kidney to a person who has kidney disease. A successful kidney transplant may prevent the need for dialysis and the complications associated with kidney failure. For many years, the kidney that was transplanted had to come from a person who had died, from a "deceased donor." But there are not enough deceased donors for the number of people who need kidney transplants. Although living donor kidney transplantation is more common, there are still many myths associated with living donor kidney transplantation.

Myth #1: A kidney donor will have to take medications for the rest of their life.

Fact #1: A kidney donor will be given prescriptions for pain medication and stool softeners at discharge from the hospital. These are only for the immediate post-operative period, after that time, a donor does not have to take medication.

Myth #2: A kidney donor will have debilitating pain for an extended period of time.

Fact #2: A kidney donor will have some pain after surgery from both the incisions and related to gas and bloating. This pain will diminish in the days following surgery and can be controlled with pain medication if necessary.

Myth #3: A kidney donor will be on bed rest following surgery.

Fact #3: A kidney donor will be out of bed and walking independently before discharge from the hospital.

Myth #4: A kidney donor will be in the hospital for an extended period of time after surgery.

Fact #4: A kidney donor will be hospitalized for two nights (i.e. if surgery is on a Tuesday, the donor will typically be discharged on Thursday).

Myth #5: A kidney donor can no longer participate in sports or exercise.

Fact #5: A kidney donor should be able to return to regular activities and exercise at approximately 4-6 weeks following surgery.

Myth #6: A kidney donor will have to follow a new diet plan following donation.

Fact #6: A kidney donor should eat a healthy, well balanced diet. There are no dietary restrictions following donation.

Myth #7: A kidney donor can no longer consume alcohol following donation.

Fact #7: While excessive alcohol use is always dangerous, a kidney donor can consume alcohol in moderation.

Myth #8: A female kidney donor should not get pregnant after donation.

Fact #8: A female kidney donor should wait 3-6 months' time after donation to become pregnant. The body requires time to recover from the surgery and to adjust to living with one kidney prior to pregnancy.

Myth #9: A kidney donor's sex life will be negatively affected by donation.

Fact #9: A kidney donor may engage in sexual activity when they feel well enough to do so.