How to Find a Kidney Donor for IgA Nephropathy

IgA Nephropathy and Kidney Transplantation: Finding a Donor

IgA Nephropathy and Kidney Transplantation: Finding a Donor
A kidney transplant may be one of the treatment options your care team discusses with you if you’ve been diagnosed with IgA nephropathy (IgAN), a condition that causes kidney damage and can lead to kidney failure.

 During this procedure, a surgeon places a healthy donated kidney into your body to do the work your damaged kidneys can no longer do. For many people, the transplant process begins with the search for a donor.

“Finding a kidney donor is a journey,” says Nichole Jefferson, a Dallas-based two-time kidney transplant recipient diagnosed with IgAN and an American Kidney Fund Ambassador. That journey is often a team effort between you, your medical team, and your community.

Many people assume that if a family member can’t donate a kidney, their chances of receiving a transplant are slim, Jefferson says. But potential donors can come from many places, including friends, coworkers, members of a faith community, and even people who learn about a person’s story through social media.

Living vs. Deceased Donors

Kidneys used for transplantation can come from either a living or a deceased donor.

A living donor is an adult healthy enough to donate one of their kidneys while they’re alive.

Before donation, living donors go through extensive medical testing to make sure they’re in good health and that donating a kidney is safe for them.

A deceased donor kidney comes from someone who has recently died.

“For the most part, those individuals have passed away from some comorbidity, like diabetes, high blood pressure, strokes, or heart attacks,” says Nicole M. Ali, MD, a transplant nephrologist and the medical director of the kidney transplant program at NYU Langone in New York City. “So while [deceased donor] kidneys can be transplanted and definitely help people, they’re not necessarily the healthiest kidneys.”

Why Living Donation Is Preferred for IgAN

Both types of transplants can be successful, but living donor kidneys have several advantages.

Because living donor kidneys generally come from healthy individuals, they often work better and last longer than deceased donor kidneys, says Dr. Ali. In fact, “[living donor kidneys] last almost twice as long as the typical deceased donor kidney,” she says.

Living donation can also significantly shorten the time it takes to receive a transplant. If you’re hoping for a deceased kidney donation, you’ll be placed on a waiting list. The national transplant waiting list in the United States is very large, Ali says, with over 100,000 people in line for an organ, and the vast majority are waiting for a kidney.

Depending on where you live, it can take several years for a deceased donor kidney to become available.

A living donor transplant often happens much sooner, sometimes within weeks to a few months of the donor being cleared to donate, Ali notes.

That shorter timeline may allow you to receive a transplant even before you need dialysis, which is known as a preemptive transplant, says Pranav Garimella, MBBS, MPH, a San Diego–based nephrologist and the chief medical officer at the American Kidney Fund. This may help prevent some of the complications of kidney failure, including a higher risk of heart disease and stroke, and decrease the risk of your body rejecting the new kidney.

What Makes a Good Match for IgAN?

A “good match” means the recipient’s immune system is less likely to recognize the donor kidney as foreign and attack it, which could lead to organ rejection, says Dr. Garimella. To determine this, transplant teams look at several factors.

Blood Type

Blood type is always one of the first steps in determining a good match, says Rafael Villicana, MD, a nephrologist and the medical director of kidney transplantation at Loma Linda University Health in San Bernardino, California.

Like blood transfusions, kidney transplants require compatible blood types. In general:

  • People with blood type O, known as “universal donors,” can donate to any blood type, but can generally only receive a kidney from someone with blood type O.
  • People with blood type A can donate to recipients with blood type A or AB, and can receive a kidney from donors with blood type A or O.
  • People with blood type B can donate to recipients with blood type B or AB, and can receive a kidney from donors with blood type B or O.
  • People with blood type AB can receive a kidney from any blood type, making them “universal recipients.” But they can generally only donate to someone with blood type AB.
Some transplant centers offer special treatments that allow a transplant to happen even when donor and recipient blood types don’t match.

 Your care team can tell you if this is something to consider.

Human Leukocyte Antigen (HLA) Matching

The next step involves looking at HLA matching. HLAs are proteins on the surface of the cells in the body that help the immune system tell the difference between what belongs in the body and what doesn’t.

Because these proteins act like identification markers, transplant teams compare a donor’s HLAs with the recipient’s when evaluating compatibility.

 The more markers they share, the lower the risk of rejection, Garimella explains. Close family members are more likely to share HLA markers, but unrelated people can also be good matches, Ali says.

Crossmatching

Before transplantation, your care team will also perform a crossmatch test to check for antibodies, or proteins that can recognize and attack unfamiliar cells.

If you’ve had a previous kidney transplant, received a blood transfusion, or been pregnant, your immune system may have developed antibodies, a condition known as being sensitized, says Dr. Villicana. The more sensitized you are, the harder it can be to find a compatible donor.

What This Means for People With IgAN

For people with IgAN, the matching process is largely the same. Some research suggests that very closely matched donors may be linked to a slightly higher risk of IgAN returning in the transplanted kidney.

 But the focus is still on finding the best possible match and making sure the recipient’s immune system is unlikely to reject the donor kidney.

Ali says some transplant centers are also beginning to use a newer approach called eplet matching.

 Rather than looking only at HLA markers, eplet matching looks at smaller components of those markers.

Think of HLA as a house and eplets as the features of that house, such as the windows, front door, or paint color, Ali explains. Two houses may not be identical, but they can still share many of those features. By matching these smaller features, doctors can trick your immune system into thinking there isn’t much difference, essentially finding compatible donors who might otherwise be overlooked, while potentially lowering your risk of rejection, she says.

How to Start the Process of Finding a Donor

Before someone can volunteer to donate a kidney, they need to know you need one.

Here are some ways to get the word out.

1. Get Comfortable Talking About Your Needs

The fear of being turned down, burdening someone you love, or putting another person’s health at risk can make it feel nearly impossible to even talk about your need for a living kidney donor, says Atul Agnihotri, a kidney transplant recipient and the CEO of Kidneys for Communities, a nonprofit focused on increasing access to living donor kidney transplants.

Try reframing the way you think about it. Think that you’re not asking someone to donate a kidney, Jefferson says; rather, you’re talking about your needs and giving others the opportunity to help if they feel called to do so.

Talking about your need for a donor may never feel easy, but it often becomes less intimidating with practice.

 And it can open the door to conversations that might not have happened otherwise.

2. Start the Conversation Close to Home

A natural place to begin is with the people closest to you, not only because family members may be potential donors, but because they — and your close friends — can become part of your support system.

Even if a loved one isn’t a match or can’t donate, they can be a valuable part of the search.

They can help spread the word and connect your story with people you might never reach on your own, says Agnihotri.
Starting close to home may also mean helping the people around you understand what IgAN is, what dialysis involves, or how a transplant could improve your quality of life, Jefferson says. Transplant centers often have educational materials that can help answer questions and guide those conversations. The more people understand what you’re experiencing, the more inclined they may be to support you and share your story with others.

You might even ask a trusted friend or family member to serve as a point person during your donor search. They can help share updates and keep the conversation going when you don’t have the energy to do more outreach yourself.

3. Spread the Word

The best chance of finding a living donor is to share your story as broadly as possible, Agnihotri says.

People may be motivated to help because they feel a connection to your background, your profession, or your life experience, he explains. A first responder may feel called to help a fellow first responder, a teacher may be inspired to donate to another educator, or someone from your faith community may step forward simply because your values align. You never know who your story will reach or who it will move.

Here are a few ways to help those connections happen, according to Agnihotri.

  • Use social media and video. Consider creating short, personal videos explaining your situation to share on platforms like Facebook or Instagram. Seeing your face and hearing your voice humanizes your journey and helps people connect with it.
  • Reach out to your local and professional networks. The people who know you through work, church, volunteer activities, or community groups may be able to help spread your story.
  • Consider printed materials. They may sound old school, but printed flyers or business cards can be another way to get your story in front of people who aren’t active on social media and might not otherwise hear it. Post them in high-traffic spaces like coffee shops or community center bulletin boards.
  • Pitch your story to local media. As intimidating as it may sound, contacting a newspaper or TV station news editor can put your story in front of an entire community. And remember that local coverage can often reach a national audience.
Feel free to inject your personality, humor, and creativity into how you share your journey. But as you share your story publicly, stay cautious. Be wary of anyone who contacts you claiming to be a potential donor but quickly asks for money, banking details, or other personal information.

If something feels off, trust your instincts and loop in your transplant team before engaging further.

Take Care of Yourself While You Wait

Searching for a living kidney donor comes with a lot of unknowns, including not knowing how long the process will take or whether your efforts will lead to a match.

“Support systems, patient communities, and access to accurate information are so important,” Jefferson says. While on the list awaiting her second kidney transplant, connecting with other people living with kidney disease gave her a source of support and encouragement. Take care of your mental health, talk to a counselor, transplant social worker, or join a support group.

 You can tap into a variety of IgAN resources that offer educational materials, peer mentoring, and community forums.
At the same time, stay closely connected with your healthcare team, go to your regular medical appointments, and follow your treatment plan, Agnihotri says. Try to stay as healthy as possible while you search as your health status can affect your eligibility for transplantation.

Jefferson encourages staying engaged in your care and continuing to advocate for yourself. While the donor search can take up a lot of mental space, remember that you are more than your diagnosis. Hope, she says, can be a powerful part of the transplant journey.

What to Do if Your Willing Donor Isn’t a Match

Finding a living donor is a big deal, but what happens if they aren’t a match? It doesn’t necessarily mean the end of the road, says Agnihotri. Today, many people who have an incompatible donor can still receive a living donor kidney through special programs. Two of the most common ones are paired kidney exchange and donor chains.

Paired Kidney Exchange

A paired kidney exchange, sometimes called a “kidney swap,” involves two donor-recipient pairs who are incompatible with each other.

For example, your donor may not be a match for you. At the same time, another transplant candidate may have a willing donor who isn’t a match for them either.

“If your donor is compatible with that other patient, and their donor is compatible with you, you can swap,” says Garimella. Both pairs undergo surgery at the same time, and both transplant candidates receive a compatible living donor kidney. Paired exchange transplants have been shown to have similar success rates to other living donor transplants.

Donor Chains

A donor chain is similar to a paired kidney exchange but involves more people. It starts with someone who wants to donate a kidney but doesn’t have a specific recipient in mind, known as a non-directed donor.

 That person donates to a patient whose own donor isn’t a match for them.

The donor who wasn’t a match for their intended recipient then donates to another patient in the same situation, and that patient’s donor does the same for someone else, and so on.

One act of generosity essentially starts a chain reaction, Garimella explains, allowing multiple patients with incompatible donors to receive well‑matched living‑donor kidneys.

So, even if your donor isn’t a match for you, they may still be able to help you receive a transplant through one of these programs.

Resources We Trust

EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
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Igor Kagan, MD

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