The Real Deal About Becoming A Living Kidney Donor, Part 1: Before You Choose to Become a Living Donor

By Leslie Spry, MD, FACP, FASN, FNKF

Donor monthOn average, nearly 3,000 new patients are added to the kidney waiting list each month and every 14 minutes someone is added to the kidney transplant list. April is Donate Life Month and there’s clearly a dire need for more organ donors.

With that in mind, there are risks and benefits to becoming a living donor. To donate a kidney to a loved one, friend, or even a stranger, is truly to give the gift of life. I have seen in my own practice that living donation frequently makes both the giver and the receiver feel better, and typically those who donate kidneys to their loved ones are joyous and enthusiastic about it.

But the goal should always be to donate a kidney as safely as possible, and with an informed understanding of the risks to both the donor and the recipient. What does it mean to donate a kidney safely? I often receive questions about what people should do if they are pondering becoming a living donor, from what the living donation process entails, factors to consider, and what must be done after donation to protect one’s remaining kidney.

In honor of this health awareness month, I’ve written a three-part blog series with some of the key information you should know before, during and after you choose to donate a kidney. Check back next week for parts two and three in the series.

Before You Choose to Become a Living Donor

There are risks and benefits to becoming a living kidney donor. Back in 2009, I wrote a blog specifically about these risks and benefits. After 6 years, I felt it was time to provide an update and share some recent research and perspective on the matter. I typically receive a number of questions when people are interested in becoming living donors. Here are the top 5 questions that come up again and again:

  1. What is my risk of dying from donating a kidney to a loved one?

    This is commonly the first and most-frequently asked question by potential living donors. A comprehensive study examined the surgical mortality within 90 days of donating a kidney, in the United States, from 1994 through 2009. This study found that there were only 25 surgical deaths among 80,347 kidney donors during that time period. This corresponds with a surgical death rate of 0.031% or about 3 per 10,000 donor surgeries. To put it in perspective, the surgical mortality rate for non-perforated (“non-ruptured”) appendicitis is estimated at 8 per 10,000 cases of diagnosed appendicitis. Surgical mortality for living kidney donors was found to be slightly higher in men than in women, and slightly higher in blacks than in whites or Hispanics. That said, the number of deaths was still very low. When looked at over the course of the study (average follow-up of 6.3 years) and compared to a matched population in the United States with similar risk factors, no difference in overall mortality was seen over the duration of the study.
    The conclusion: Surgical deaths and long term deaths from kidney donation are very rare.

  1. What is my risk of kidney failure or needing dialysis or a transplant if I become a living donor?

    A recent 2014 study deals with this question. Using similar methodology to the study mentioned above, 96,217 living kidney donors were evaluated during the time period from 1994 to 2011. During that time period, 99 living donors developed kidney failure, or End Stage Renal Disease (ESRD), that required dialysis or kidney transplantation. The authors compared this result to an evaluation of matched individuals with similar risks and ages but who did not donate a kidney, and followed that during the same time period. The numbers were very small, but the authors estimated that approximately 4 out of 10,000 of these non-donors developed ESRD compared to 31 out of 10,000 kidney donors using the above statistics estimated for a 15 year risk time period. They concluded that while the risk of ESRD was low in both populations, the risk for kidney donors was statistically higher than for non-donor matched individuals.
    The conclusion: There is a very small risk of ESRD following kidney donation.

    Another study examined the risk of developing high blood pressure, diabetes and chronic kidney disease in different racial ethnicities. This study followed patients for an average of 7.7 years after donating a kidney, and found a slight increase in the incidence of high blood pressure (50% increased risk), for diabetes and chronic kidney disease (2.3 times the risk) in the black population. Similar findings were found in the Hispanic population compared to the white population.
    The conclusion: Racial disparities in medical conditions occur among living kidney donors.

  2. If I donate my kidney, what long-term effects will I experience?

    You will have a scar from the donor operation. The size and location of the scar will depend on the type of operation you have. Most donors have no negative long-term effects, but some donors have reported that they’ve experienced problems with pain, nerve damage, hernia or intestinal obstruction.
    The conclusion: Unfortunately, there are not currently any national statistics on the frequency of these reported problems. People with one kidney may be at a greater risk of high blood pressure, protein in the urine and reduced kidney function, so it’s important to monitor these numbers.

    If you are female and considering becoming pregnant, a recent article in the New England Journal of Medicine looked at the risk for high blood pressure and toxemia during pregnancy in women who had been kidney donors in Canada between 1992 and 2009. High blood pressure or toxemia (pre-eclampsia) occurred in 15 of 131 (11%) of pregnancies by women who had been kidney donors and this compared to a similar group of women who had not been kidney donors where 38 out of 788 (5%) pregnancies experienced high blood pressure or toxemia.
    The conclusion: There may be an increase in pregnancy risk for kidney donors, although that absolute risk remains very low.

  1. I want to be a donor to a friend or family member, but they won’t let me. What can I do?
    Some individuals with kidney failure may decide they do not want a kidney transplant or would prefer to wait for a deceased donor, instead of considering a living donor. While it is a very kind and generous offer to donate your kidney, the person with kidney failure can choose to accept or reject your offer to donate since he or she has the right to decide against a transplant. Even though you may feel like donating your kidney would really help someone that you love or care about, it’s important to respect this person’s decision.
  1. How much will it cost to donate my kidney? Will my insurance cover it?
    Generally, if the donation is to a family member or friend, the recipient’s insurance will pay for testing and surgery expenses. However, the donor might be responsible for travel expenses (if the donor and recipient live in different towns/states) and follow-up care, in addition to lost wages. Since donors are never financially compensated, be sure to ask the financial counselor and/or social worker at the transplant center for assistance with these issues or any questions that you may have about the costs associated with donation. Time off from work and travel expenses are not covered by Medicare or private insurance. However, donors may be eligible for sick leave, state disability and the Family and Medical Leave Act (FMLA). Some follow-up expenses may also not be covered, so it’s important to discuss these matters with the specific transplant center.
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