You decided to donate your kidney. Faced months of medical tests. Talked with everyone from nutritionists and social workers to the transplant surgeon. And set aside time for the surgery and recovery.
You're in control until the second the surgery begins. But once the transplant is complete, a powerful part of the process is out of your hands. Will you meet your recipient?
Even if you tend to downplay what you did, the truth is that the gift of a kidney has changed your recipient's life. A meeting could be a nice chat, a cry fest, or something in between. You’ll want to be ready if there’s a possibility you could meet.
Will It Happen?
It’s not automatic that you’ll have a chance to meet the person who gets your kidney. Every hospital manages nondirected, or anonymous, donor-recipient meetings differently. Some donors and recipients share a hospital and meet the day after surgery. Others wait weeks to make sure the kidney isn't rejected, which can cause guilty feelings on both sides. And some never meet at all.
"If possible, you should prepare for the possibility that you'll never meet," says Rebecca Hays, a living donor social worker and independent living donor advocate with the University of Wisconsin Hospital and Clinics Transplant Clinic. "It is only the minority of nondirected donors who eventually meet their kidney recipients."
This may feel like a letdown if you've imagined a get-together after the surgery. "Over the years, many nondirected donors have reported it is harder than they expected not to have this connection, to not know much about what happened to their gift, or how their recipient is doing," Hays says.
You Can Decide
Some anonymous donors choose to stay that way. There's no right or wrong here, only what feels best to you. Maybe you prefer privacy. Or you’d rather not stand in the spotlight, even for a few minutes.
"Sometimes donors decide they don't want a connection," says Jody Jones, PhD, a transplant psychologist and clinical associate professor of surgery at the University of Iowa Organ Transplant Center. "They don't want another human being to feel obligated to them."
If They Decide Not to Meet
"After an anonymous donation between an older and younger woman, we had them set up to meet in the clinic one day," Jones says. "The donor was in the clinic and the recipient called from the parking lot, saying, 'I can't do this.' She never came in. And the donor was fine with it. Sometimes the recipients are so overwhelmed and feel guilty that someone has done this for them. They don't have the words to express their gratitude."
It’s OK to feel disappointed if your recipient doesn't reach out. Closure comes in many forms.
"It might help to connect with transplant recipients in other ways to see what life after a transplant can be like -- volunteer for the annual Transplant Games or for the local chapter of the National Kidney Foundation," Hays says. "Or volunteer at your transplant center to speak with others who are thinking about donation. There are plenty of ways to find meaning in your act of 'paying it forward' that don't involve meeting your recipient."
It's a Go: Now What?
You might feel anxious, happy, worried, relieved, or just some good, old-fashioned excitement.
"Meetings are generally sweet," Hays says. "Everybody's nervous, and then there's the shared experience of the surgery and hospital stay to talk about."
"When I started this process, I never wavered or doubted my decision," says Tonya Spencer, a nurse recruiter in Grand Rapids, MI, who had two children under the age of 3 at the time of her surgery. "I didn't know my recipient would want to meet me, but when I found out he did, it happened quickly. I felt calm and ready. I called my husband and parents so they could be there as well."
Bringing a buddy for support is a great way to go into your meeting. Hays advises meeting in a public place, like a cafe or the transplant clinic, and setting a natural time limit. "Long enough for a cup of coffee," she says. "Don't expect to talk for hours the first time you meet."
There May Be Crying
Be ready for a lot of grateful tears.
"I cried as soon as I saw her," says Shai Robkin, a self-described serial entrepreneur from Atlanta who donated a kidney to a stranger. "She was up, walking around, talking and looking good. And it hit me: The surgery worked. You can read about how much kidney issues can affect someone's life, but hearing about her life before surgery made me realize how radically her life had just changed."
Nurses and doctors get choked up right along with family. "When they opened the door, it was kind of like a corny Lifetime movie," Spencer says. "His mom and sister were bawling. It was almost like an out-of-body experience. Everyone was saying thank you. Thank you for saving his life. Until that moment, I never thought of it as saving someone's life."
The Big Thank You
One of the most uncomfortable parts of the meeting for donors is receiving an avalanche of emotion from the recipient and their family.
"I look back at the important days in my life: Being born. My wedding. The birth of my children and grandchildren. Getting my degree. Getting my commission in the Air Force. And meeting my donor," says Maurie Cone, a retired dentist and kidney recipient in Thousand Oaks, CA. "Because of her, I can be with my children and grandchildren."
You may not feel like a superhero -- and if it's right after surgery, you may not feel great at all. It's normal to feel sheepish or embarrassed about the attention.
Whether your meeting is a one-time thing or the beginning of a friendship, here's how to keep a positive attitude in all that gratitude:
Say you're welcome. Doesn't feel like enough? It is. The words "thank you" probably don't feel like enough to your recipient either.
Share why you did it. "When you get to a certain age, you can be cynical about saving the whole world," Robkin says. "Forget the world; let's just save one person at a time."
Flip it around. Remind them how courageous they've been to survive kidney disease and the uncertainty of the donor process.
Recipients show their gratitude in many ways. For some, a simple thank you is enough. Others may send a card, flowers, or a homemade gift. If your recipient wants to go big, Hays suggests pointing them toward a donation to an organization that helps other people with kidney disease.
Though anonymous kidney donations are rare in comparison with the amount of paired kidney donations (when the donor and recipient know each other), there’s plenty of support. If praise feels awkward, reach out to other donors for help. And breathe. You’ve done an incredible thing. Enjoy the moment and treasure it.