Afterwards…

The most common question from a potential living kidney donor is “What are the consequences of living with one kidney?”

There are physical, psychological, financial, and lifestyle answers to that question, drawing on medical and psychological research, recommendations from transplant professionals, and the experiences of living kidney donors who visit LDO.

The Physical Consequences of Donation

At the time of the surgery, a donor gives up a kidney — half of the donor’s filtration capacity. The remaining kidney compensates by getting a little larger through a process called “hypertrophy.” That’s where the kidney’s filters, called glomeruli, increase in size. (They do not increase in number.) The larger glomeruli have a larger surface area and therefore are able to increase their ability to filter the blood (called “hyperfiltration”).

Two medical research studies have been able to measure these changes in the remaining kidney over a nine-year and 10-year period, respectively, and the results are very similar. Right after the donation surgery, a donor has 50% of predonation filtering capacity because only one of the two kidneys remains. Six months later, the remaining kidney has increased in size by about 30% (on average), and the filtering ability has increased to about 65% – 70% (on average) of the predonation level. The kidney’s filtering ability increases slightly for the next three to five years, peaking at about 67% – 72% of the predonation level. It then stays steady or begins a slow natural decline because all people — donors and nondonors — experience a decline in filtration ability as we age.

Now you can see how having a high level of filtering capacity before you donate is so important because you’ll have only around 70% of that capacity after you donate. Is that enough to keep you healthy for the remainder of your life?

While living kidney donation has been going on for more than 65 years, medical research on the long-term consequences of donation has been limited. Fortunately, there have been several recent studies that shed light on the health of living kidney donors. These studies show that the vast majority of living kidney donors do not experience significant differences in their long-term health after donating.

But the studies do show that some kidney donors are negatively affected by giving up a kidney. Here’s how some donors are affected over time:

  • High blood pressure. Several medical studies show living kidney donors have slightly higher blood pressure when compared to a similar group of nondonors. Living kidney donors are about 40% more likely to be diagnosed with high blood pressure (also called “hypertension”) than nondonors — 16.3% of donors versus 11.9% of health-matched nondonors in one study. Consequently, living donors are more likely to be using anti-hypertensive medications to control their blood pressure. While the majority of donors do not experience hypertension, managing blood pressure is important because it is one of the leading causes of kidney failure.
  • Protein in urine (proteinuria). Living kidney donors have a slightly higher occurrence of proteinuria, meaning they have a relatively high level of protein in the urine. A higher or increasing level of protein in the urine is an indicator of kidney disease. One report summarizing several medical studies found an average of 10% – 12% of donors had proteinuria, and that the level of protein was higher for those who had been donors the longest.
  • Anemia. One medical study revealed nearly 12% of living kidney donors had anemia after their donation. (The median time after donation was about 18 months.) It was especially common among women, with 72% of the female donors having anemia.
  • Testicular pain (orchialgia). For men, pain in a testicle after donation is very common and is felt on the same side as the donated kidney (i.e., if you donated your left kidney, your left testicle is painful). Some studies showed as many as a third to half of male donors reported testicular pain after donation surgery. Pain typically lasts a few days to a few weeks, although some visitors to LDO report chronic pain years after donating. The cause may be from closing off the gonadal vein during the donation surgery. (One medical study suggested that where the clip is placed on the vein may influence whether a donor experiences testicular pain. Therefore, if you are male and have not yet donated, be sure to ask the surgeon about this risk and what he or she can do to minimize it during the surgery.) The pain usually goes away on its own. If you have chronic pain consider talking with a urologist.
  • Preeclampsia during pregnancy. For pregnant women, the occurrence of preeclampsia — high blood pressure during pregnancy — is significantly higher among living kidney donors compared to nondonors. One study found 11% of pregnant living kidney donors had preeclampsia compared to only 5% of nondonors. Fortunately, research has shown there have been no differences in the likelihood of premature birth, low birth weight, caesarian section, or postpartum hemorrhage. Medical professionals suggest you inform your obstetrician/gynecologist that you have one kidney and that you monitor your blood pressure throughout your pregnancy.
  • Chronic Pain. Oddly, research on long-term chronic pain following living kidney donation is almost nonexistent. One study’s findings revealed 5.7% of donors experience chronic pain at an average of six years after donation. Donors who had abdominal surgery before their kidney donation were more likely to have chronic pain after donation. Most of the donors with chronic pain treated it with analgesics (drugs that reduce pain).
  • Gout. Living kidney donors tend to have higher levels of uric acid in their blood. Sometimes uric acid can crystallize in the joints and lead to gout, a type of arthritis with tenderness and sometimes severe pain in the joints, especially the toes. The risk of gout is very low but is still about 60% higher for living donors — 3.4% for living kidney donors versus 2.0% for nondonors. Gout can be treated with medication and changes to diet.
  • Fatigue (adrenal insufficiency). Some living kidney donors report they don’t have the same level of energy after they donate, experiencing symptoms similar to chronic fatigue syndrome. Damage to the adrenal gland during donation of the left kidney could be the cause because the surgery includes closing off the adrenal vein, which may cause damage to the gland. (Surgery to donate the right kidney does not include closing off the adrenal vein.) The prevalence of adrenal insufficiency among living left-kidney donors is not know and diagnosis can be difficult, but your doctor can run tests to check the function of your adrenal glands if you feel chronically tired after your donation.
  • End stage renal disease (ESRD). The most common concern among living kidney donors is for the health of the remaining kidney. Medical research shows the risk of ESRD is significantly higher for living donors, but the absolute level of risk is very small. For example, one study showed 0.47% of living donors developed ESRD compared to 0.07% of health-matched nondonors. Another study showed the incidence of ESRD was 30.8 donors per 10,000 donors (0.31%) versus 3.9 nondonors per 10,000 nondonors (0.039%). Kidney disease usually develops over a period of time, allowing you to take corrective action (diet, exercise, and medications) before it leads to kidney failure. Therefore, it’s important to work with your doctor to monitor your kidney health for the rest of your life. See the section below titled “Staying Healthy After You Donate” for suggestions.
  • Life expectancy. The results of medical research on the life expectancy of living kidney donors is mixed. An old study that compared living donors to the general population showed living donors live longer. That’s not a surprise because living donors must be healthier than the general population to be eligible to donate, so those results aren’t especially insightful. Three more recent studies using groups of nondonors with health characteristics similar to living donors showed life expectancy to be about the same as for nondonors. However, another study with a health-matched control group indicated a higher rate of mortality for living donors. That study found the risk of death was about the same for donors and nondonors for the first 10 years after donation, but then the risk of death increased faster for donors after 10 years. That is, the longer the time since donation, the greater the difference in the risk of death compared to nondonors. The authors of the study speculated that the higher risk of death might be the result of higher levels of high blood pressure, protein in the urine, and reduced kidney function among donors, all of which are associated with higher levels of mortality. But because of the differing results of these research studies, we hope for additional research to clarify this issue.

If you have ongoing complications from your donation, keep in touch with the transplant center. You can also find support here on LDO.

The Psychological Consequences of Donation

Research into the long-term impact of donation on the psychological and social well-being of living donors is limited. “Psychosocial” studies of donation have focused on the attitudes, motivations, relationships, and decision making of potential donors before they donate or within just a few years of donation.

Initial signs are positive about the psychological impact of living donation on donors. One study that evaluated living donors over a two-year period following donation revealed that the vast majority — 96% — had no regrets about donating a kidney. The study also showed that the majority (generally 70% or more) of living donors tended not to have mood disturbances, fear of kidney failure, concerns about body image, or life dissatisfaction over the two-year period. The study found that donors who had a lower sense of well-being before donation tended to have lower levels of well-being after donation.

Another study of living donors with an average of four years since donation showed the majority did not experience depression or anxiety, and most had no change or an improvement in relationships with the recipient, spouse, and family members.

But two years and four years after donation isn’t exactly “long term.” Other research indicated as many as one in four living donors experience significant psychological distress at some point after donation. For example, a kidney from a living donor lasts about 10 – 15 years so, if enough time passes, there’s a chance it will fail. The studies reveal there is a higher chance of depression among living donors after the loss of the donated kidney or the death of the recipient, which may occur long after your donation date.

Living donors who experienced reoperation or other complications from the donation surgery were much more likely to experience depression sometime after the donation.

Also, your relationships with the recipient, family, and friends may change. The majority of living donors experience the same or improved relationships shortly after donation, but not everyone does and the relationships can change over time. As anecdotal examples, some living donors have reported tension after a time with a recipient who began feeling he or she “owed” the donor something after receiving a kidney, or the recipient felt guilt for putting the donor through the risk of the donation surgery. In some cases, the donor felt resentment if, after time, the recipient stopped taking anti-rejection medicines or made lifestyle choices that put the donated kidney at risk.

It would be interesting to see what happens to attitudes about donation, fear of kidney failure, relationship with the recipient, and other psychological and social factors 10, 20, or more years after donation. For example, does concern about kidney failure increase (more than a nondonor control group) as a living donor ages? Do donors’ feelings about donation change if the recipient dies or the organ fails, even if after a long period of time? We’ll have to wait for the research.

The Financial Consequences of Donation

Most discussion of the financial impact on living donors focuses on the time before and around the time of donation. But are there longer-term financial consequences of having one kidney? Many LDO visitors have said the answer is yes, and research into the issue confirms it.

Most frequently, the impact takes the form of denial of insurance or higher premiums for coverage. Donors have reported problems when purchasing health, life, and disability insurance. The lack of long-term health research and the failure of the medical community and insurance companies to agree on the long-term health consequences of donation contribute to the problem. For example, some insurance companies consider donation a “preexisting condition” or believe having one kidney puts the donor at greater physical risk, even when the donor’s physician attests to the good health of the donor.

Donors in countries with universal health insurance do not have issues with denial of health insurance coverage or higher premiums. U.S. donors since 2014 also have protections, specifically that health insurers cannot deny coverage or charge a higher premium because you are a living kidney donor. However, not all forms of medical insurance are protected. Supplemental medical coverage (sometimes referred to as “critical illness insurance” or “indemnity insurance”), Medicare supplemental coverage after the initial enrollment, short-term medical insurance, and faith-based cost sharing programs are exempt from the protection. Fortunately, because the vast majority of people in the U.S. have access to protected coverage, most donors no longer report problems with health insurance.

However, problems with life and disability insurance continue. One study showed one out of four living donors were denied coverage or charged a higher premium for life insurance.

In the U.S., several states have enacted insurance protections for living donors that include life and disability insurance. A list of states and the status of those protections is maintained here by the American Kidney Fund. There is also proposed federal legislation to prevent insurers from denying coverage or charging higher premiums to living donors. However, despite bipartisan support, the bill has not moved toward passage.

If you find yourself being denied insurance coverage or charged higher rates because you are a living donor, please contact us and we will work with you, your doctors, and the insurer to see if we can address the situation. We also encourage you to lobby for legal protections at the state and federal level by writing to your legislators. You can also help the cause by participating in medical research, which will help resolve the open issue for insurers as to whether donating has long-term implications for your insurability.

Another long-term financial consequence of donation is the cost of additional medical expenses that may arise as a consequence of your being a living donor. One source is annual physical exams and testing of your kidney health. Because transplant centers don’t follow donors after two years, you will need to take responsibility for monitoring your kidney’s health yourself. A suggested process, described in the next section, involves an annual physical exam and tests of your remaining kidney. Even if you are insured, there may be out-of-pocket expenses for copays and deductibles associated with the exam and tests.

Another source of expenses might be the cost of additional prescription medicines or other treatments for conditions that are slightly more prevalent among living donors. For example, there is a slightly higher chance of having high blood pressure, proteinuria, or gout. These conditions can be treated with prescription medications. You might also have psychological counseling sessions and anti-depression medication to treat depression. Depending on your insurance, you may have additional out-of-pocket expenses as a result of these treatments.

These are expenses you may want to consider including in your budget for the rest of your life.

Lifestyle Choices: Staying Healthy After You Donate

Before you leave the care of your transplant team, make sure you have a personalized plan for taking care of your general health and monitoring the health of your remaining kidney. Then work with your personal doctor — your primary care physician or maybe a nephrologist (a kidney specialist) — to implement your plan.

The goal is to protect the health of your remaining kidney for the rest of your life.

Transplant specialists and kidney-related professional organizations provide several suggestions for steps you can take:

> Measure Your Kidney Health

To know how your kidney is doing, you need to measure your kidney function at least annually and keep a record of the results on an ongoing basis. To measure your kidney function, you can include several tests in your annual physical exam. Transplant specialists say the best way to track your kidney function is by measuring your glomerular filtration rate (GFR). (For details on GFR, see this LDO message thread.) Another important measure is the amount of protein in your blood. Additional tests can see if you have diseases that are hard on your kidney, like high blood pressure and diabetes.

For donors in the U.S., your transplant center is required to follow up with you after six, 12, and 24 months. Be sure to participate in the follow up exams. Make sure the transplant center has your contact information (home address, email address, and phone number) so they can reach out to you when it is time for the follow up. After the 24-month follow up, you are on your own to continue monitoring your kidney and general health.

To help you remember to have an exam each year, you could give yourself the exam as a gift on your birthday or other annual event you’d like to celebrate like the date of your donation surgery.

To help you with the tests, LDO created a personal worksheet listing the tests to consider each year, as well as a way to keep track of your results year over year. The standard version of the worksheet is a PDF file that you print and then enter the information manually. Download the standard version by clicking here. We also provide a version in a format compatible with Microsoft Word in case you want to enter the content electronically and keep the information as a digital file. For the Word version, click here. Share the worksheet with your doctor before each exam so your doctor can order the tests you need.

If you have health insurance, this exam and the tests should be fully covered as preventive care. Check with your doctor’s office and your insurance company to make sure. Even if you have out-of-pocket expenses, it might be worth having a historical record of your health.

You need to keep track of your kidney function results so you and your doctor can spot any trends in the numbers. The issue for kidney donors is that the “normal” range of kidney test results are based on people with two kidneys. Therefore, the normal range may not be relevant to you as someone with one kidney. Unfortunately, because we don’t have long-term medical research yet on the kidney health of donors, it could be decades before there is enough information to set new standards specific to living donors. In the meantime, you and your doctor can evaluate your kidney health by looking for trends. Tracking annually will allow for an early intervention if the results suggest there may be a problem emerging.

Note that the information provided here is based on medical research and the recommendations of professional organizations such as the National Kidney Foundation. It should not replace the care and advice of qualified medical professionals. You should use this information with your primary care physician and any specialists you have.

> Check on Your Mental Health

Your mental health also deserves attention after you’ve donated. As previously mentioned, there are events related to donation that can happen long after your surgery that might affect your mood or satisfaction with life.

If feelings about yourself or others change in a negative way, tell someone you trust about how you’re feeling. You can get help from mental health specialists such as a psychologist or psychiatrist. There are also nonprofessional support groups for living donors like those you can find on Facebook. You can also post a note on the LDO message board to share your experiences and feelings.

You might find changes to your diet and exercise, getting more sleep, or adding meditation or yoga to your routine can help.

If you want to try a mental health check up, here is an online survey that provides resources and tools linked to your results.

> Make Kidney-Friendly Lifestyle Choices

There are choices a donor makes about what foods to eat, beverages to drink, and activities to undertake that directly affect your remaining kidney. Here are some examples:

  • Don’t use tobacco or nicotine products. Users of tobacco and nicotine products — such as cigarettes, cigars, vaping, and chewing tobacco — are projected to have a 76% higher risk of End Stage Renal Disease (ESRD).
  • Maintain a healthy weight. Obese donors, defined as having a BMI greater than 30, have almost twice the risk of ESRD. Therefore, target a BMI under 30 (unless an athlete or bodybuilder). Get professional help with diet, exercise, medication, and — if necessary — surgery to keep your weight under control. A high BMI is also associated with high blood pressure and diabetes, the two leading causes of chronic kidney disease. If you need help calculating your BMI, look here.
  • Adopt a kidney-friendly diet. Lower protein — especially low animal protein — and low sodium diets are recommended because they put less stress on your sole kidney. Diets that emphasize fruits, vegetables, and nuts are preferred. Be cautious — and seek medical advice — before choosing protein-heavy diets such as Atkins and paleo. Here are a couple of research reports on the topic: Nutrition and the Kidney Donor, Healthy Eating After Kidney Donation. There are several diets identified as kidney-friendly including DASH (Dietary Approaches to Stop Hypertension), Mediterranean, and flexitarian. Need help? Find a nutritionist to guide you. The cost of a consultation might be covered by your insurance, so check with your insurer.
  • Exercise regularly. Regular aerobic exercise — for example, 30 minutes of walking three times a week — is good for anyone but can be especially important for someone with one kidney. Exercise helps keep your BMI in range and avoid kidney-damaging medical conditions like diabetes and high blood pressure. And it can help your mental health, too. Check with your doctor before beginning any exercise program, and consider consulting with a trainer for a customized routine. Sports are also a great way to get exercise. Just make sure you protect your remaining kidney if you participate in contact sports like American football, hockey, boxing, wrestling, and martial arts.
  • Avoid cola soft drinks(or do you say “pop” or “soda”?). Drinking two or more cola soft drinks per day is associated with a significantly higher risk of ESRD. Medical research reveals a 200% higher chance of a reduction in kidney function. It doesn’t matter whether the drinks are regular or diet versions; any cola drink like Coca-Cola, Pepsi, and RC Cola appear to be linked to the problem. (There was no association with noncola drinks like Sprite, 7-Up, and fruit-flavored sodas.)
  • Avoid nonsteroidal anti-inflammatory drugs (NSAIDs) and other drugs potentially damaging to your kidney. Medical research shows a strong association between the use of NSAIDs and a decline in kidney function, and the decline in function worsens the longer someone uses NSAIDs.  NSAIDs include aspirin, ibuprofen (Motrin and Advil), naproxen (Aleve), Celebrex, and many other over-the-counter and prescription drugs. Here’s a list from Johns Hopkins Hospital of NSAIDs to avoid. Here’s a list from ChristianaCare of “safe” and “non-safe” medications that includes treatments for cold, allergies, diarrhea, constipation, and indigestion. If you have any questions about what medications are OK for someone with one kidney to take, talk to your doctor and your pharmacist.
  • Check with your doctor about the use of supplements. Are special vitamins and herbs added to your diet potentially damaging to your kidney? You might think taking something that is supposed to improve your health is always good, but sometimes it’s not clear because many supplements have not been thoroughly studied or approved by government health agencies. Some supplements have been shown to be damaging to kidneys. The National Kidney Foundation has a list of herbal supplements that could be a problem. Check with your primary care physician or a nephrologist before taking supplements.

Make sure your doctors and pharmacists know you have one kidney so they don’t mistakenly prescribe drugs that are dangerous to your kidney. Also, having a lower level of filtration (especially a GFR less than 60) may require adjusting the level of medication for a medicine to be effective. Examples are antibiotics, anti-hypertensives, anti-diabetics, and chemotherapy drugs. Be sure to discuss with your doctor if there are consequences to having one kidney that would affect the amount and frequency of drugs you take.

Advocate for Future Donors

Once you’ve joined the ranks of living kidney donors, you can help improve the living donation experience for future donors by being an advocate. Here are some ways you could do that:

  • Support legislation providing financial protection for living donors. Living donors are exposed to financial risks, such as denial of insurance and higher premiums, unreimbursed expenses associated with the donation, and lack of pay and job protection while on leave for the donation. Fortunately, legislation providing protections is becoming more common. As a living donor, you can help by supporting living donor protection laws. Raise awareness if your state or country does not provide adequate protection. Contact your legislators to sponsor and vote for living donor bills. Join the advocacy groups of organizations like the National Kidney Foundation and the American Kidney Fund. In the U.S., you can keep track of how well each state is doing with living donor protection laws here.
  • Participate in research. If you are in the U.S., commit to the 6-, 12-, and 24-month follow-up medical exams. The information from those exams is collected by UNOS and supports research about living donation. Also, you may be contacted by medical and psychosocial researchers to participate in studies of living donors. Please consider being a participant so the amount and quality of information about the long-term consequences of donation can improve.
  • Be a Living Donor Buddy. Research has shown that potential living donors have better experiences when they are able to talk with someone who has already gone through the donation process. That’s why LDO created Living Donor Buddies™. These buddies are living donors who volunteer to share their experiences, answer questions, and provide support to potential donors. If that sounds like something you would like to do, sign up here.
  • Share your experience. Potential living donors also like to hear about the actual experiences of living donors — stories written by someone who went through the evaluation, the surgery, and the recovery — rather than relying on second-hand information from the transplant center. If you would like to share your experience — whether good, bad, or a mix of both — you can add your story here.
  • Participate in living donor message boards and Facebook groups. Potential donors often seek information about living donation by searching on the Internet. While these searches turn up results mainly from transplant centers, many potential donors want to speak directly to former donors. As a donor, you can share your experience, knowledge, and support by participating in living donor message boards and groups. Below are examples:
    Living Donors Online message board
    Living Donors Online Facebook group
    Living Kidney Donor Support Group on Facebook
    Living Donors With Complications Facebook group
    Living Donors Support Group – Only donors & those considering donation on Facebook

Questions?

Do you still have questions? The best thing to do is leave a message on the LDO message board or the LDO Facebook group page. We would be happy to help you with any questions or issues you may have.

All of us at LDO hope you have a wonderful donation experience!


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