What potential donors need to know about living kidney donation
November 30, 2017
Pop singer Selena Gomez revealed personal news in mid-September 2017 that shocked her fans: The 25-year-old had recently received a kidney transplant due to complications of lupus, a chronic autoimmune disease. And the donor? Her best friend, 29-year-old actress Francia Raisa.
Questions began to pour in about the starlet’s condition: How could someone so young have kidney failure? What will Raisa’s life be like now with one kidney?
Though Gomez’s story was high-profile, her situation actually is quite common. More than 96,000 people were on the waiting list for a kidney in October 2017, according to data from the United Network for Organ Sharing (UNOS). And in 2016, nearly 30 percent of the more than 19,000 kidneys transplanted in the U.S. came from living kidney donors such as Raisa – people with two healthy kidneys who voluntarily have one removed to transplant in someone whose kidneys have failed.
For someone who needs a kidney transplant, asking a loved one or friend is a major request. Likewise, it’s a huge gift when a donor agrees. Living kidney donation can be a really beautiful, bonding experience. And living kidney donation is incredibly safe for donors – fewer than 1 percent of donors will wind up on dialysis themselves in the future, which is only slightly higher than the average risk of an individual with two healthy kidneys.
But not just anyone can donate a kidney. Stringent screening is required, and potential donors often have a lot of questions about their eligibility and how donation will affect their health in the future. Let’s go through some of the frequently asked questions, as well as risk factors and benefits of living kidney donation.
Is it better for a friend or loved one to donate rather than a stranger?It’s not necessarily better, but sometimes it’s easier. Many of us would love to help a family member in need by donating a kidney. But we often see older adults who refuse to take a kidney from their willing son, daughter, or spouse. They’d rather wait on the transplant list than put their family member at perceived risk.
Unfortunately, people often have to wait several years on the transplant list to get a kidney. Every year, 4,500 people die while on the kidney transplant waiting list, according to data from the Living Kidney Donor Network. One bad infection while a patient is on dialysis can cause an illness from which he or she won’t recover.
Living kidney donation is an incredibly selective and safe process. Fewer than 4 percent of living donors from 2006 to 2008 experienced complications that required medical intervention or hospital admission six weeks after donating.
We simply don’t allow people to donate their kidneys if we think their future health will be at risk, even if the recipient is someone they really love. In fact we (the donor evaluation team) do not meet the potential recipients to keep the entire evaluation process entirely separate from him or her. This is to avoid any conflict of interest which could impact the decision on the donor eligibility. My No. 1 focus in my role on our transplant nephrology team is the safety of the donor. We determine who can safely donate through our rigorous application process.
How do I find out if it’s safe for me to donate a kidney?Here at UT Southwestern, the first step in our potential donor screening process is a kidney donation application. This application allows a wider net of potential donors to participate, even if they live across the country from the recipient.
A relatively healthy person in his or her 30s to 50s likely will fly through the form. The application asks for basic health details, such as age, height, and weight. We also ask for personal medical history, particularly pertaining to diseases that could lead to kidney problems down the road, such as:
- Heart disease
- High blood pressure
- Kidney disease
- Kidney stones
- Smoking or vaping
- Urinary problems
Obesity and smoking can be exceptions for some potential donors because these risk factors sometimes can be reversed. Smokers and vapers can quit with help from their doctor and might be able to reapply, depending on their overall health.
We sometimes turn down potential donors who are not obese but moderately overweight with risk factors for other health diseases such as diabetes or high blood pressure. If a potential donor who is 30 years old and overweight with risk factors for high blood pressure or DM and with significant weight gain in the future, he or she will be at higher risk of kidney damaging disease such as diabetes and high blood pressure. If a potential donor has no other risk factors today aside from being overweight, the person can see a doctor or specialist to start losing weight, then apply again later.
We actually see return applicants fairly often. It can be tough for someone to quit smoking or lose weight, but saving the life of another person is pretty great motivation!
What tests will I have to get if I want to donate a kidney?We put potential donors through a battery of testing. Some of the younger donors who come in have never even seen a primary care doctor before, so it can be a shock!
First, we contact potential donors who pass the online application so we can review their medication and surgery history. If these look acceptable, we ask them to have some lab work done. We request lab work before potential donors travel to see us for two reasons: It’s easier, and it saves time and money in travel. The lab work will include blood and urine testing to examine kidney function, blood counts, and urological health, as well as to screen for additional medical issues.
Many donors want to know who covers the cost for all this testing. The recipient’s insurance should cover the donor’s medical expenses, including evaluation, surgery, and limited follow-up appointments and tests. The donor might have to pay for follow-up services if medical problems arise from the donation. Be aware that the donor’s insurance also might not cover these expenses. Keep in mind, too, that the recipient’s insurance typically doesn’t cover lodging, transportation, lost wages, or childcare. Financial questions and concerns should be directed to the transplant center social worker. Help also can be accessed through the National Living Donor Assistance Center.
We invite potential donors who pass the lab testing to UT Southwestern for two days of further screening. This seems like a lot because it is. We want to be absolutely certain donors are healthy enough to donate, and we want them to be fully comfortable with their decision to participate.
Once potential donors arrive on campus, they meet with a social worker and attend an educational class to review the entire process. They also spend part of the first day meeting with two of our team members:
- Our living donor advocate, who ensures donors understand the process and that they receive appropriate information regarding informed consent, surgical and medical risks, and follow-up requirements.
- Our transplant pharmacist, who will discuss how the medications donors are currently taking affect their kidney function, as well as medications to avoid. Some of these include nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen.
I tell potential donors that their meeting with me is the toughest part of the whole process. I’m the last person they see before we give the go-ahead that they can donate. Their sessions with me involve detailed medical and personal history reviews and examinations, from childhood to present, and predictive modeling to estimate their future risks for kidney issues based on this information. We also discuss the future risks for kidney disease and the importance of long-term follow-up to monitor their overall health.
What’s the long-term impact on a donor of living with one kidney?Though many potential donors might feel selfish if they worry about their future health after donation, I assure them that it definitely is not. In fact, it’s common among potential donors – and doctors. While I thoroughly enjoy my job, I joke that every year I work in this role ages me 10 years.
Surprisingly, the potential donors who make me the most nervous aren’t those who are age 50-plus. It’s those who are younger than 40 and in good health. While these donors are healthy now, we can’t predict with 100 percent certainty that in 20 years they won’t develop diabetes or high blood pressure, or that they won’t suffer a car accident that damages their remaining kidney.
What we do know is that the risk of a donor developing kidney complications later in life is only slightly higher than it is for healthy people who don’t donate. The reason for this is that we are so selective in who can donate. And we keep a close eye on donors for at least two years after donation to ensure their quality of life is at or above what it was before. Also, we encourage them to see a primary care doctor to ensure they stay healthy.
We talk to female potential donors at length about pregnancy, as well. For the most part, their risk of complications during pregnancy is no different than for the general population. Studies have shown prior donors have a higher risk of high blood pressure during pregnancy (also known as gestational hypertension) and pre-eclampsia. Women of childbearing age are not excluded from donation, but this is an important consideration to be discussed with their spouses, and their obstetricians should be informed regarding plans for pregnancy while living with one kidney. However, many women proceed with the donation, and I’ve had a few drop me notes to share that they had babies without issue a few years down the road.
After donation, most donors can return to their normal activities fairly quickly. Many of the donors we’ve seen at UT Southwestern are athletes, and within a few months they are able to get back to running, yoga, swimming, and more. I caution weightlifters to ease back into the sport slowly to avoid injury, and we tell all athletes to be careful about how much protein they consume because too much can affect kidney function. My main tip about resuming athletic activity is to avoid doing anything that would raise your mom’s blood pressure – such as skydiving or bungee jumping – without first consulting a doctor!
Potential donors also ask often whether they’ll have to give up drinking. Social drinking is fine, but binge drinking should be avoided (that’s more than one drink in a day for women and more than two drinks in a day for men).
Most donors can go back to work in four to six weeks. We help any potential donors who need special accommodations – such as those who have a job that requires heavy lifting – work through those details before they commit to donating.
What if I was asked to donate, but I really don’t want to?This situation really gets me riled up on behalf of the donor. No one should ever coerce or intimidate someone into donating a kidney, regardless of health or family situation. That’s a decision only a potential donor should make.
If someone is pressuring a donor, whether it’s a friend, family member, or even a doctor, I want to know that. We absolutely will not let anyone donate who is not 100 percent comfortable with the decision and who we aren’t 100 percent sure isn’t being pressured to donate.
To combat this ugly situation, all potential donors meet with a social worker as well as our living donor advocate, who is a psychologist that operates independently of the UT Southwestern transplant program. The advocate is another set of eyes and ears to help us ensure donors understand the short- and long-term risks and benefits. And if donors say yes to donating but change their minds, even on the day of surgery, that’s OK.
What are the benefits of kidney donation for donors?Though taking out an organ hardly seems like it would improve a person’s quality of life, that’s exactly what happens for so many donors.
First, they get to share a special bond with someone forever that can never be matched. Second, they are thoroughly educated on health and wellness before and after donation – often learning things they never knew. People often give up unhealthy habits in order to donate, such as smoking, excessive drinking, or eating an unhealthy diet. I’ve had donors lose as much as 30 pounds in order to donate. Later, they told me they never thought they could lose that much weight and that they were motivated to keep it up.
Third, they get the chance to advocate for others. In 2017, we had our first “altruistic” kidney donor at UT Southwestern – she didn’t have a specific donor in mind and wanted to give of herself to help someone else. This person contacted us because she said she’d done her research and was impressed by the expertise of our doctors and the level of care we provide potential donors. Though she didn’t have a loved one or friend in need of a kidney, she very much wanted to donate one to help a stranger in need.
We put her through the regular application process, and she passed with flying colors. To date, she’s eight months post-op and back at her normal routine while serving as a wonderful advocate for living kidney donation.
Living kidney donation cannot happen without a team of diverse specialists who are as passionate about the program as they are about patient care. I’m grateful for my colleagues in cardiology, endocrinology, and other specialties who regularly work into their clinic schedules potential donors who need special testing. We give our potential donors the “rock star” treatment because that’s the least we can do for the tremendous gift they’re giving of themselves.
Interested in becoming a kidney donor? Request an appointment with our transplant team for more information.