You Can Stop Humming Now

by Daniela Lamas

  Eddie is friendly and open, and I imagine he was that way even when sick, so he got to know the other regulars in his dialysis time slot. Most of them were older than he and had been ill for a longer time. It struck Eddie that dialysis had become their job, and they seemed almost resigned to that—it was simply what they needed to do if they wanted to stay alive. Sometimes, when a familiar face stopped showing up, Eddie would learn that the patient had died. A person could be there one session and gone the next, just like that. Eddie wondered whether this was how things would end for him, too. He imagined that he would die, and the people who shared his dialysis time slot might wonder where he was for a moment. Then someone else would fill his spot, and little by little the memory of his existence would fade into nothingness.

  But Eddie was only fifty. As soon as he grew strong enough that his body could handle the stress of another surgery, his doctors put him on the national waiting list for a kidney transplant. With that, his name joined those of more than eighty thousand men and women, some younger than Eddie and some older, some of their stories more tragic and some less, but all of them waiting for the same thing: a kidney from a person who had died. Wait times are different in different parts of the country, and in the Boston area, where Eddie was listed, his doctors told him he might wait five years or even more. He saw that future stretching out before him, dialysis for four hours at a stretch three times a week, weeks turning to months and then years. With all the potential complications, and an expected life span of only five to eight years after starting dialysis, Eddie couldn’t even be sure he would live that long.

  Positivity had always been important to Eddie, and from those early days in the hospital, he had resolved to act strong and soldier through. He wanted to show his children that he could face adversity and not give up. He wanted to inspire them. But the idea of waiting on that list, and the knowledge that he could die while waiting, rocked him. Only when he was alone, without his wife or children, did he let himself break down and cry.

  Eddie’s doctors had encouraged him to ask his friends and family if one of them would be willing to donate a kidney to him. It would be in his best interest to do so. First of all, kidneys from living donors generally function better than those from donors who’ve died. And if Eddie could find someone willing to give him a kidney, he wouldn’t have to wait until he climbed to the top of the national waiting list. Besides, if anyone could make this happen, it would be Eddie. He’d been in sales his entire life, and his easygoing nature and charisma made him successful in that line of work. But Eddie didn’t know the first thing about asking someone to undergo an elective surgery to remove an organ on his behalf, and the very idea left him with a sense of discomfort. So he didn’t ask. Instead, he waited. He went to his dialysis sessions and he played solitaire or dozed off, and then he went home again. And the call did not come.

  Weeks went by, then months. Maybe this was the way Eddie’s life would be now. He could hope that his number would be called and pray that he would not get too sick while waiting. He could resign himself to this reality, like those he had seen around him in the dialysis center, and maybe he could even find a way to make pieces of it good. He found himself thinking that perhaps he could get back to work and help support his family, despite the constraints of his condition. But then, on New Year’s Day of 2013, Eddie woke up and found that somehow his outlook had shifted. Things were different. He felt good that morning, better than he had in a while. He felt cocky. So he sat down in his living room in front of his computer, and he made a resolution. “This is the year I’m going to get myself a kidney,” he thought.

  He didn’t know how to do it. So he got started the way that any motivated, computer-savvy person would. He pulled up Google. He entered his search terms and started reading about kidney transplant and donation, following the links to a Facebook page for a nonprofit organization called the Living Kidney Donors Network. There he came upon a surprising message.

  Just a few hours earlier, a woman living across the country in California had been sitting at home on her couch as the annual Rose Bowl parade played on television. Kelly Wright watched the Donate Life float pass across the screen. The float was packed with men and women, all there to honor family members who’d served as organ donors upon their deaths. Kelly saw people waving, and as the camera panned through the adoring crowds she found herself wondering why it was that she would have to wait until she died to give someone the gift of one of her body parts.

  Kelly was forty-four years old with two small children. The idea of donating a kidney had actually come to her before, a few years back, when a friend’s child developed kidney failure due to a congenital anomaly. She had been ready to give him one of her kidneys, but he ended up getting an organ through the national deceased donor waiting list. When Kelly was let off the hook, she was a little more disappointed than relieved, and the idea of donating stayed with her like an itch. That morning, something about seeing the float sparked her desire again, and this time, fueled by the promise of a new year and resolutions, she decided to make it happen. She, too, opened up her computer. She logged on to Facebook, found the Living Kidney Donors Network website, and sent a message off into the ether.

  She wrote, “A little scared but hopeful about saving a life!”

  That was it. Someone out there on the other end was going to get one of her kidneys. From across the country, in the living room of his home in a suburb outside Boston, Eddie read Kelly’s message. He was just an hour and a half into his online search, and he hesitated. He read it again. “Is that what people do?” he asked himself. “I was new to this. I didn’t know if I should respond. What’s the protocol?”

  Protocol aside, Eddie figured that if he didn’t reply, someone else likely would. He hadn’t realized that a complete stranger might offer to give up a kidney. It was surprising for sure, and it gave him pause, but the more he thought about it, the more appealing the idea became. Even if he ultimately found a friend or a relative who was able and willing to donate, he’d have to live with the knowledge that someone was going through an elective surgery, with all its risk, for him. But this woman was ready to give away a kidney. He couldn’t imagine why, but it didn’t really matter, did it? She had decided that she was going to donate to someone, and if it all worked out, he might as well be the one to get it. He began to craft a reply, anxious that in the minutes it took him to compose his message he’d lose his chance. Still uncertain of the protocol, he was careful to share enough to pique the writer’s interest, but not so much that he might overwhelm her:

  You are a very brave and giving person. I am a 51 year old male from North Reading, MA. I [have been] married to Julie for over 22 years and have two college age children...I also suffer end stage renal failure and require dialysis 3 days / 12 hours per week. My blood type is A+. I would love to be considered to be a recipient to receive your kidney. Please contact me if I might be considered and we can arrange a time to speak.

  Respectfully, Eddie

  After he sent the message he tried to quell his growing excitement. “I said, ‘Well, what are the odds of that working out?’” So he kept the search going. He built himself a new Facebook page and a website that chronicled his shoulder surgery, the devastating infection, and his resultant kidney failure. He called the site and the Facebook page Eddie’s Kidney Kampaign, choosing to spell “campaign” with a K. He wrote a brief bio and offered viewers a few pictures of himself with his family. He came across as a likable, regular guy.

  And then a message popped up in his inbox. It was a response from the stranger in California.

  “Hi Eddie…I think I am a universal donor…I certainly will help if I can!”

  Far from the transplant clinics and doctor’s offices, there is a growing tide of men and women searching for organ donors through websites and message boards. This isn’t the underground of buying and selling organs, although that, too, is real. There is nothing illegal about trying to look sympathetic on
social media and hoping that you might be the winner of a stranger’s generosity, although maybe there is something ethically murky about it. Some surgeons, uncomfortable with the way these relationships are formed, do refuse to operate on donor-recipient pairs who’ve found each other on social media. Still, I’ve seen posters in local coffee shops and in my hospital cafeteria. Take one recent example I came across while sugaring my coffee: a multigenerational family photo with the words “Devoted father and grandfather needs a kidney, please call.”

  Open Facebook any day and you can find them without leaving your bedroom; you can scroll through daughters and husbands and uncles and fiancées, lined up one after another like the strangest kind of dating site. They make their case with photos of loving families and dogs and babies, in tones alternately hopeful and pleading. I look through them and I wonder, What if I were to pick one? Who would I pick? Why? Some pages draw me in more than others. My eye goes to the ones with enough text, but not too much. I prefer photos and good grammar, as I do in a site that aims to find me a potential match of any sort, and in this case I also find myself searching for the stories that strike me as the most sympathetic. Maybe it would be the mother of an eight-year-old boy whose husband left her when she got sick. Maybe it would be the “regular twentysomething” who’d been thinking about law school until she wound up on dialysis. Or maybe it would be the man my father’s age with a warm smile, “very well known around the community for being generous and giving back.” Or would it be the gospel choir manager? Or how about the father of five who has dedicated his life to helping veterans? I could keep going. It doesn’t end. There is so much need that it is almost hard to see it all. I struggle to imagine myself choosing among potential recipients and sending a message, and I find that I cannot.

  Kelly is a different kind of person. She didn’t hesitate. Eddie’s story wasn’t the most heartrending of all possible tales, but that wasn’t what Kelly was looking for. Her motives were simpler than that; Eddie needed a kidney, and she wanted to give him one. In some way that defied words, giving her kidney to this particular stranger felt right, and Kelly just knew they were meant to meet. Kelly believes in fate, and she believed that this was the way things were supposed to work out.

  She isn’t one to change her mind once it’s made up, not even after her father sat her down at Denny’s and told her that she couldn’t go through with the surgery. But Eddie didn’t know this about her yet, and so he was more guarded. He decided to focus on building up his Eddie’s Kidney Kampaign website. He picked a photo from his daughter’s high school graduation for the cover shot. There he was, standing with his wife and daughter and son, looking proud in a white shirt and checked blazer. No one came forward through the website to offer to donate, but Eddie stayed with it. He had been through too much to put all his faith in a stranger who might not even be a match. Besides, even if she did end up with the medical okay to donate, he knew that up until the moment that she went under anesthesia and the surgeons made the first cut, she might get cold feet and back out. He wouldn’t have blamed her.

  Eddie had never met anyone quite like Kelly. He asked her why she wanted to give him her kidney. She told him, quite honestly, about how she had made her decision while sitting on the couch that day, watching the Rose Bowl parade. It was the truth, and she didn’t intend to worry him, but that answer only concerned him more. Kelly had made up her mind so quickly, who was to say she wouldn’t change it back just as fast? Eddie braced himself for disappointment, while a cousin of his started the work-up to become a donor.

  But Kelly didn’t disappear. To the contrary, she didn’t seem to have any reservations at all. She texted Eddie frequently, messages that would come in nearly ten texts at a time, one after another in rapid succession, lighting up his phone throughout the day. Eddie, who tells me that he’s “not really a phone guy or a text guy,” always made sure that he was quick to respond. And as the weeks passed and he felt his comfort with the stranger who might donate her kidney grow, Eddie’s feelings gave way to cautious optimism. When Kelly started planning to come to Boston at the end of February to get tested for her suitability as a donor, Eddie invited her to stay with his family. It was the least he could do. He planned a party for her, renting out half of a favorite restaurant about ten miles outside Boston. Dozens of people stopped by to meet the woman who might be able to return their friend to his former self, and when they all lined up to wish her well, Kelly felt like a celebrity. “I was overwhelmed. I never felt so loved in my life,” she told me.

  She still faced mixed reactions from friends who told her she was a fool to place her body in harm’s way in order to give a kidney to a stranger. What if one of her children needed that kidney one day? What then? But she was moving forward and none of these hypotheticals would dissuade her. “You can’t live with the ‘what-ifs,’” she explained to me. “If we all lived like that, nobody would ever do anything. What if I die walking across the street? There are a lot of risks in life.”

  Kelly wanted to schedule the transplant as soon as possible. She was a match and she was healthy enough to donate, so she didn’t see a reason to wait. Eddie was a little surprised and hesitant to allow her to move so fast, but as far as he could tell, Kelly was all for it. She seemed even more enthusiastic, or at least more vocal in her enthusiasm, than he was. They settled on a surgery date in April, just a month after she had secured the medical approval to become Eddie’s donor.

  With the date approaching, Kelly flew across the country again, this time with her husband and mother. Eddie’s house isn’t huge, and there they all were under the same roof, the Wright clan squeezed into Eddie’s daughter’s bedroom. Those were a tense few days. The two families were still essentially strangers, but there they were, linked by need and altruism, one organ and two impending surgeries.

  With all the medical tests and the phone calls and the texts and the travel that had led up to it, the day of the transplant was almost anticlimactic. It seemed that for Eddie and Kelly, the most complex and intricate negotiations had nothing to do, really, with what happened in the hospital. Kelly was wheeled in first, and then it was Eddie’s turn. I asked Kelly to describe the surgery, and she paused midsentence. “The actual surgery? Oh, that was nothing,” she replied. Kelly was up and walking around Boston to see the tourist attractions in just a few days.

  For her, the hard part came later, when she returned home to California. There had been so much buildup, anticipation and planning and nervous excitement, and then, back home with the transplant over, it was so strangely quiet in comparison. Kelly was surprised that she didn’t have more contact with Eddie. They’d been texting every day, multiple times a day, even, before the surgery. And of course she was busy as she worked to catch up on what she’d missed at home. But despite her other commitments, she found herself wishing that Eddie would take more initiative to maintain their relationship. “At the beginning, I felt a little touchy or upset when I didn’t hear from him more often. There were some hurt feelings,” Kelly told me.

  It wasn’t that Kelly needed people. She had, and still has, plenty: a time-consuming and fulfilling job as a cat veterinarian, a supportive husband, and two children. After the transplant, she had even started to care for an ailing homeless man in the little time she had free. And she had flown to Boston to donate her kidney without asking for anything in return. But only after it was all over and she was back home did she realize that maybe she had wanted something after all. Her kidney now lived inside Eddie. Did that very fact make them friends, or perhaps even family? Were they supposed to vacation together, or just call each other from time to time? Or maybe it meant nothing except that Kelly had done something extraordinary, and Eddie had been lucky, and that was all.

  As for Eddie, he thought about Kelly often, with an amazed gratitude that he couldn’t even put into words. What she had given him was the ability to live without dialysis and to return to his life, and that life was a busy one, with two children an
d a wife, and the hefty responsibility of a new job as a district sales manager for an industrial supply company. That needed to be okay with her.

  Besides, it was not as if Eddie disappeared from Kelly’s sphere entirely. He invited her back to Boston a few months after the surgery to join him for a walk to raise money for research on kidney disease. She stayed with his family again, and they all walked together, decked out in T-shirts decorated with the words “Kelly’s Heroes.” They posed for photos with big smiles and their arms around one another. It was a great time. Kelly had given Eddie an organ. She hadn’t done it to gain a friend or a family member, and as wounded as she initially felt, when it came down to it, she knew that. “It shouldn’t come with anything I expected him to do,” Kelly told herself. She didn’t regret her decision. She would have donated again, if she could.

  The twinge of disappointment in the nature of her relationship with Eddie might always be there. But it has faded over time as the donor and recipient have settled into a more comfortable pattern. Eddie refers to Kelly as his “little sister,” though he is quick to note, with a smile, that he can go months without talking to his actual sisters. He and Kelly do talk from time to time, to check up on how things are going or to acknowledge birthdays and holidays. After all, they will always be linked. Eddie describes his kidney as a “she,” and thinks frequently of the possibility of rejection, dutifully swallowing a dozen pills each day to make sure that his body accepts Kelly’s organ for as long as possible.

  It’s been years since his transplant, but Eddie intermittently receives requests from people on the transplant waiting list for advice on how they, too, might secure an organ donor. He tries to reply to each of them. It feels like a kind of responsibility. After all, he figures that they aren’t going to get any of this information in the doctor’s office. So he shares with them what he learned of the human mess of hope and fear that lines the path to the operating room. Behind the scenes, it is all so much more complicated than I ever could have anticipated. “When you’re starting a kidney campaign, you need to attack it like you’re searching for a job. You need to send out your ‘résumé,’” he tells them. That means you need to develop the right kind of online presence: tone is important, and don’t write too much. You need to keep a positive attitude, and you should never complain on your website. That’s key. For example, it would be reasonable to describe a day on dialysis as “another four hours on dialysis. Ugh.” But if Eddie were to write that, he would make sure to follow it with a more uplifting message in order to keep his readers engaged. For instance, he could end with something like “Still better than the alternative.”