March 11, 2019

What it's really like to donate a kidney. (Lesson 1: It's OK to be scared.)

Daily Briefing

    Ilan Goldenberg donated his kidney to his father in July 2018. Writing in Vox, Goldenberg describes the emotionally complex process and shares seven lessons he learned along the way.

    Here are 5 key tactics to attract and retain transplant patients

    1. Having reservations doesn't make you a bad person

    When Goldenberg's father asked him about donating his kidney, Goldenberg writes that he was "blindsided by [the] request." At first, the notion of donating a kidney was "scary," Goldenberg writes, as he wasn't sure how much healthy time a donation would add to his father's life, or how the surgery might affect Goldenberg's health—or his ability to donate an organ to his own children if needed in the future.

    After the initial request, Goldenberg spoke to some friends about it. Their reactions were mixed: Some agreed that it was a difficult choice, others said he had an obligation to make the donation, while others couldn't believe his father would even make such a daunting request.

    Speaking with his friends helped Goldenberg think through his feelings. "I realized that I was not a horrible person for not just jumping in immediately. But giving up a kidney was not so outlandish either."

    2. Get all the facts before making a decision

    Three months after his father asked him about his kidney, Goldenberg was ready to move forward. So he filled out a living donor referral form and sent it to Saint Barnabas Medical Center to begin learning about the donation process.

    He and his wife Meghan met with a nephrologist who walked them through the procedure, explaining that Saint Barnabas had done almost 2,000 live donor transplants in the past 20 years and only a few had resulted in serious complications for the donors, none of which were life-threatening.

    He also explained that Goldenberg would be able to go back to work after about two to three weeks of recovery with very few changes to his life. Further, the doctor explained that his father's kidney disease was not genetic, so the chances Goldenberg's children would get the disease—and potentially need a donated kidney themselves—were extremely slim.

    However, the nephrologist also cautioned Goldenberg that "[t]here is no such thing as a risk-free surgery" and that complications were possible.

    "Still, I walked out of that meeting much more open to donating my kidney," Goldenberg writes. "Replacing vague fears with actual facts was essential."

    3. The 'screening process' is about more than learning if you're a physical match

    The screening process for a kidney donation is very thorough, Goldenberg writes. In addition to extensive physical tests, it also includes a thorough mental screening.

    Goldenberg and Meghan met with a social worker who asked them a variety of questions, such as whether Goldenberg was suicidal, if he would have paid time off, and who would take care of their kids while he recovered.

    Goldenberg also learned that a panel would ultimately determine whether he was qualified to donate his kidney to his father. Some of the people on that panel had never met Goldenberg's father, which was intentional. "The theory is similar to the adversarial legal system," Goldenberg writes. "Every defendant deserves a lawyer to argue their side. Every donor deserves medical professionals to watch out for their interests, regardless of the recipient."

    4. Not donating a kidney comes with real costs

    Had Goldenberg not donated his kidney to his father, his father would have gone on a waitlist for a cadaver kidney. Given that his father was 70 years old, it was unlikely he'd get one, and even if he did, cadaver kidneys don't work as well or as long as kidneys from live donors do.

    Meanwhile, Goldenberg's father would have to be on dialysis, which meant spending 11 hours a week hooked up to a machine and spending the rest of his time feeling tired, Goldenberg writes.

    "Not donating a kidney to a loved one in need can come with its own costs to you and your family," Goldenberg writes. "And refusing to accept a kidney from a loved one who can help is not necessarily a brave act of self-sacrifice. It may do more harm than good."

    5. A kidney donation is emotionally complex

    Meghan was put in an "incredibly hard" position, Goldenberg writes. "Meghan ha[d] a good relationship with my parents, but our family and our kids are her priority."

    Meghan had, essentially, veto power if she chose to use it. The panel wouldn't approve the donation if she objected to it, and Goldenberg's parents would never know that she had vetoed the procedure. In fact, if Goldenberg had decided against donating his kidney for any reason, the transplant center would simply have informed his father that Goldenberg didn't qualify as a match.

    But if Meghan had vetoed the donation, "what would that have done to our marriage, especially as my father got sicker?" Goldenberg asks. "The spouse has a choice … but they don't really." Even though Meghan had reservations, Goldenberg writes that "she never once in the entire process said no."

    Goldenberg's parents also had trouble accepting that the donation needed to happen. Until the surgery, Goldenberg writes that his parents were constantly exploring alternatives until he definitively told them, "This is the only sensible choice. I'm doing it. Stop."

    As for Goldenberg himself, he began "wrestl[ing] with some complex feelings [he] had toward [his] parents." Goldenberg realized that, since he was giving his father his kidney, he had begun thinking his parents owed him and "should adjust their behavior accordingly."

    When he told the social worker about this feeling, she said that was fairly common. "We like to say we specialize in kidney transplants, not personality transplants," she said.

    6. Kidney donors aren't saints

    Since the donation, Goldenberg writes that he's been referred to as a "saint," an "amazing person," and told that he gave "the most generous gift." He acknowledges that he enjoys the praise, but adds, "I am not a saint, and vanity is one of my weaknesses."

    The problem with characterizing a kidney donation as saintly is that "we make it so exceptional as to be inaccessible," Goldenberg writes. "The reverence we show to donors and the emphasis the promotional material puts on how rewarding the experience is can end up dissuading people from doing it."

    Ultimately, the reason Goldenberg donated his kidney was simple. He learned it was a low risk to him and that it could significantly improve his father's life, and he determined it was the right thing to do.

    7. The experience is rewarding

    The experience was "deeply rewarding," Goldenberg writes. "When I see my father playing with my kids, it makes me so happy to know that he can do that because of what I chose to do. And when I talk to my parents about the next trip they are planning in retirement, it is wonderful to know that I played a role in making it happen." And "[b]est of all," Goldenberg writes, "when my kids get older and truly understand what I chose to do, they will view it as a normal and expected thing that you do for others" (Goldenberg, Vox, 3/6).

    Here are 5 key tactics to attract and retain transplant patients

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