Perhaps the most common question of a potential kidney donor is, “What are the long-term consequences to my health of living with one kidney?”
Some medical research on the long-term effects of living kidney donation has been conducted, and there is need for much more research. In the meantime, the general conclusions from research to date are:
- The general health and kidney function of living kidney donors are as good as the general population.
- The mortality rate of living donors is better than the general population, possibly because living donors, prior to donation, tend to be healthier than the general population.
- Where differences in health in the donor population have been found, there have been slightly higher incidences of high blood pressure (hypertension), excess protein in the urine (proteinuria), and high blood pressure, protein in urine, and fluid retention in pregnant women (preeclampsia).
If you have ongoing complications from your donation, keep in touch with the transplant center. You can also find support here on LDO and in a Facebook group called Living Donors with Complications.
Staying Healthy After Donation
The medical studies suggest there are few health consequences from donating a kidney. However, some precautions naturally are in order. For example, you may need to limit or give up activities that could damage your remaining kidney, such as rough contact sports (for example, boxing or American football).
As noted above, some studies have shown a slightly higher risk of high blood pressure and proteinuria. These risks can be monitored through regular physical exams, blood tests, and urine tests. Interestingly, Switzerland established a living donor registry in 1993 to track living donors and to ensure they are regularly examined by their personal physician for blood pressure and renal functions. No such registry or post-operative protocols exist in the U.S. or other countries. U.S. transplant centers are required by UNOS to follow up with you after six months, one year, and two years. To date, adherence to this requirement has been limited, submissions are incomplete, and the results are not used in constructive ways (e.g., research). The UNOS Living Donor Committee has proposed a standard medical and psychosocial follow-up protocol, but UNOS has yet to adopt the suggestions.
Here’s additional information on living with one kidney from the National Kidney and Urologic Diseases Information Clearinghouse. And here is an LDO page capturing the suggestions of living donors who have posted on the LDO message board.
Pregnancy should not be a problem following donation, but a female should let the obstetrician know she has only one kidney so kidney function can be monitored during the pregnancy. One recent study in Norway indicated an elevated risk of preeclampsia among women who had been living kidney donors. Physicians recommend waiting at least two months following kidney donation before getting pregnant. You can find more information by searching the LDO message board, where several LDO participants have left messages describing their experience with pregnancy following donation.
You should also consider your psychological health after donation. For example, some living donors on LDO report feeling depressed for a while shortly after donation. This feeling may be the result of fatigue following surgery, renewed demands on you by family and work while you are still recovering, or the sudden letdown following a major life event that had been marked by lots of energy, anxiety, and attention from others. A medical research study showed that nearly 11% of living donors were prescribed anti-depressants following donation.
Your mood can also be influenced by what happens to the recipient of your donated kidney. The recipient may reject the organ or may die despite the transplant. It’s natural to go through a grieving process in this circumstance. If your feelings of sadness persist, please get professional help. Fortunately, recipients often have significantly improved health immediately, and donors report feeling very satisfied, rewarded, and relieved by such an outcome.
If you donated to a spouse, family member, or friend, the nature of your relationship with that person may change. In some cases, it may be negative. You or the recipient may feel guilt, indebtedness, conflict, or regret and experience manipulation and other destructive behavior. Seek professional counseling if your relationship becomes dysfunctional. Fortunately, most living donors report a great improvement in their relationship with the recipient and family members after the donation.
Additional Issues that May Arise
Here are two additional issues related to donating a kidney you should be aware of are:
- Potential loss of insurance or insurability. Some LDO visitors have reported being told they lost insurance (medical, disability, or life insurance) or could not get or increase insurance coverage because of the donation. If there have been no ongoing complications from your donation, you should not lose coverage. In fact, as research has shown, living donors tend to be healthier and live longer than the average population. If you find that your insurance status has changed, please contact us at ldomail@livingdonorsonline. We will do what we can to help you get your insurance coverage back.
- Loss of kidney function. Some living kidney donors have lost the function of their one remaining kidney. One study that looked at the UNOS kidney waiting list from January 1, 1996 through February 28, 2009 found 194 people who had previously been living donors. The study also noted that the number of previous living kidney donors subsequently placed on the kidney waiting list within five years of donating “is very small [.02%].” Medical researchers have calculated the prevalence of ESRD among living kidney donors as low as 0.11% and as high as 1.1%. If a living donor needs a transplant, UNOS gives them an additional four points when placed on their transplant list, which has the effect of shortening the wait time for a deceased organ donation.
Continuing to Help After Donation
After the donation, many living donors look for ways to continue to help others. Here are suggestions:
- Share your experience by writing your story or sharing a link to your personal web page or blog. You can contribute to the LDO Experiences page here.
- Volunteer to speak to groups about your living donation experience and organ donation in general. Contact your local organ procurement organization or a speaker’s bureau to let them know you’re available to share your story.
- Participate in local and national organ donation awareness and recognition events, such as the Transplant Games of America, or the World Transplant Games.
- Sign up to be a Living Donor Buddy. A donor buddy is someone who pairs up with a potential donor to help them through the living donation process by offering educational materials, sharing personal experiences, and providing support during the donation process.
- Become a blood donor. If you are healthy, you can continue to save lives by scheduling an appointment at blood bank (for example, the American Red Cross) or participating in a blood drive.
- Register to be a bone marrow donor. Living organ donors can also be considered for marrow donation. Show your willingness to donate by signing up with a marrow donation center, such as the National Marrow Donor Program (aka “Be the Match”).
- Register on the LDO message board (there is no fee) and visit regularly to answer the questions of potential donors who visit the web site.
All of us at LDO hope you have a wonderful donation experience!