On March 8, 2011, I stood outside the operating room at New York Presbyterian Weill Cornell in my ill-fitting hospital gown and paper slippers. “You can still change your mind, you know. Now’s your last chance,” the nurse said as she handed me the pen.
“I’m ready,” I smiled, signing. Then I stepped through the OR doors to donate my left kidney—to a total stranger.
It all began while I was sitting on the couch with Bobby, my then boyfriend (now husband) reading the latest issue of Glamour magazine. In it was a story about a woman named Christina Do who donated her kidney to start a donation chain that ultimately saved 18 lives. She didn’t know the recipient at the time. She just felt compelled to do it. Since then, she had completely recovered and was as active and healthy as she had been with two kidneys.
I’d never heard of someone donating a kidney to a stranger, let alone starting a chain to save additional lives. By the time I’d read the article a second time, I knew I was going to donate.
“I think I’m going to donate my kidney,” I said to Bobby.
“To anybody. And start a chain.”
He knew better than to argue. I began researching everything about donation, starting with the donation-chain concept. It goes something like this: Patient A needs a kidney, and her loved one, Donor A, wants to donate but isn’t a good match. Patient B also needs a kidney and has a loved one, Donor B, who would like to donate but isn’t a match. As an altruistic, or non-directed, donor, I would step in and donate my kidney to Patient A (since we’re a near-perfect match), but in exchange, Donor A has to donate his kidney to Patient B. Then Donor B has to donate to Patient C, and so on. Think of it as a highly coordinated, complex, life-saving domino effect.
As I researched the possible risks, side effects, and what I could expect before, during, and after the procedure, it became more and more clear to me that I was meant to do this. It never occurred to me that this was crazy. It wasn’t about “why” but “why not.” I quickly connected with a network of other donors (mostly through social media), which further solidified my decision. They were both directed donors (they knew their recipient) and non-directed (like me, they did not know who would be receiving their kidney). Speaking with them was like hearing my innermost thoughts vocalized. We were all different in every way, but the one thread that tied us together was feeling destined to donate.
I’ve always been extremely healthy. I eat well and work out regularly. But healthy people like me can very quickly take it for granted. I simply couldn’t imagine what life would be like if I were a slave to dialysis. Worse yet, I couldn’t stop thinking about what I would do if one of my loved ones needed a kidney, and I couldn’t donate because I wasn’t a match (matches are made through blood type and other factors). I’m not very religious, but were I to find myself in that situation, I’d pray that someone would help. It felt only right to be that person for someone else.
After many discussions with Bobby, I decided to move forward with testing. My family still had no idea that I was considering donating. I decided it would be best to wait until it was definitely going to happen, and between me and that point stood endless medical, physical, and psychological tests. Around this time I also started the discussion with my employers at the time, who were, although dumbfounded, supportive—at least at first.
The testing process began in November 2010. Over the next few months, I met with my general practitioner, obgyn, a social worker, a psychologist, a nephrologist, a slew of other doctors and nurses, and eventually, the man who would be my surgeon. I had physicals, countless blood tests, an EKG, CAT scans, x-rays, 24-hour urine tests, and psychiatric evaluations to make sure I wasn’t—despite many people’s accusations—certifiable.
My family is a big, rowdy, opinionated bunch of Italians, so I knew everyone would have something to say. In early January 2011, I decided it was time to tell my mom. She did exactly what I knew she would do: cry. And cry. And then cry a little more to make sure I got the point. Like any good mother, she was worried about my safety. I assured her I would be fine, and armed her with the research I had been amassing. I promised to include her in my appointments so she could meet my doctors, which helped a little. She wasn’t happy about it, but she supported me, and really, what more could I ask? Reactions from the rest of my family were mixed, but in the end, they all became my biggest cheerleaders.
Although I had been blogging about the process for quite awhile (considerthestars.wordpress.com), it was around this time that I let my friends and the rest of my social circle in on my secret. Most of my closest friends told me I was nuts, but they asked the important questions and had my back in the end. A few, however, surprised me in their animosity. That was probably the hardest part of the process, but it showed me who my true friends are. Acquaintances and people I didn’t even know began to reach out as word spread locally and nationally. I got everything from the most heartfelt thanks to nasty accusations. But I had the support from the people who meant most to me.
By mid-January 2011, I learned that I’d passed all my tests with flying colors. I was going to be, perhaps, one of the healthiest people ever to willingly go under the knife. At this point, I was officially entered into the living donor pool. And then the waiting began. Many donors will tell you this is the hardest part—just waiting and waiting for a match, a combination of excitement and helplessness. In early February, I received the call. The call. A potential match had been found. Now all that stood between my donation and me were a few cross-match blood tests.
After a few quick tests I found out that yes, my potential recipient and I were a match, and the donation would be moving forward as soon as possible. A few excited phone calls with my transplant team and future recipient’s doctors later, and we settled on our own D-Day (Donation Day, that is) of March 8, 2011.
I immediately confirmed the date with my bosses, who were excited, and we agreed that I would use one week of vacation time and the second week I would work from home as I recovered. Typically, kidney donors need about two weeks of rest before returning to life as usual, but since I had a job that was based solely around the computer, working from home would be no problem. All set.
The morning of Feb. 28, just eight days before my surgery, I walked into work like any other day. My bosses asked me to meet them in a café below our midtown Manhattan office where their solemn faces warned me something drastic was about to happen. With barely any explanation, they told me that despite discussing and planning with them for almost a year, if I decided to move ahead with the surgery, I would be fired. It was like being sucker-punched straight in the gut that housed my soon-to-be-donated left kidney. Did I miss something? The three of us had been in communication about all these plans from the get-go. Less than a month earlier, I had been given a promotion, so I knew it wasn’t about the quality of my work. My guess? Business wasn’t going well, they needed to let someone go, and in their small minds, this was the perfect out.
I argued, but ultimately I stood my ground and decided I didn’t want to work for a company that would fire a dedicated employee one week before she donated a kidney. I walked out, head high, to the streets below, where I began to sob and didn’t stop until late into the night.
By the next morning, though still shocked, I was in a better frame of mind. Yes, it was a small damper on what was an otherwise exciting time, and yes, on top of recovering I had to find a new job in a bad economy. But it reminded me of why I wanted to do this in the first place. There were people who could only dream about being healthy enough to hold down a job, and in the grand scheme of things, this small setback was a mere blip compared to what others faced daily. I decided to dedicate the next week until my surgery looking for a new job—one that was more aligned with my passions and goals—and preparing for the awe-inspiring process in which I was about to participate.
On the morning of March 8, I awoke feeling calm and ready. I got up around the time I used to get home in my wilder days, dressed in comfortable clothes, grabbed my overnight bag, and hopped in the car with Bobby. We drove through the eerily empty streets of Manhattan toward New York Presbyterian where my parents were waiting for us. After changing into my new hospital garb, we were ushered from waiting room to waiting room, until finally my doctor came in to mark up my abdomen. Finally a nurse came in to tell me to say goodbye to my parents and Bobby. Lots of hugs, kisses, and good-luck wishes were shared, and then off we went to the OR.
After signing my life (ok, my left kidney) away, the nurse led me into the OR which was filled with doctors, nurses, anesthesiologists, and lots of equipment. I hopped onto the table and got hooked up to the machines while everyone told me how special what I was doing was and that they would take extra care of me (I’d be a liar if I said that didn’t make me feel a bit more comfortable). It felt surreal until a nurse strapped the lower half of my body down to the table. Something about that action made me acutely aware of what was about to happen. And although that should have made me nervous, it didn’t. I was ready. Then I was peacefully drifting off.
Surgery went beautifully and after a two-night stay I went home. There was pain and discomfort (mostly from being pumped with gas which then settled in pockets all over my body), but I was also elated. My recipient was doing incredibly well and at that point, my chain had already spanned six people, meaning three people had received kidneys because of my one donation.
The first week was the roughest, but the incredible Bobby and my amazing parents made it all bearable. By week two I was feeling much better, and by week three I was nearly back to normal. By the fourth week, I was working out again.
I went on interviews and eventually got a job, got engaged (!), the matter of my firing was resolved in court, and my life continued on as any 26-year-old’s would. The difference was knowing that six lives were changed because of my act, three were saved, and one—my own—was forever altered in a way that cannot be captured in words. I became even more aware of my own health, and I began looking at life from the perspective of gratitude. But something was still missing. I had still not heard from my recipient (though I knew she was healthy). I began to accept that I probably never would.
Six months later, on Sept. 11, 2011, I sat watching the 9/11 Memorial on TV. Like my fellow New Jerseyans, 9/11 hit close to home and so it’s always a somber day. I checked Facebook to get my mind off it all, and there I saw it: a message from the woman who was the person who donated her kidney so that my recipient could get mine. She asked me if I was the Melissa Arlio who donated her kidney on March 8. She and Robin—my recipient—had been searching for me for months. I began to cry the happiest of tears. I was soon emailing with Robin and there was an instant connection. She was—and still is—so overcome with gratitude that she called me her angel, and still does today. Robin had been dangerously close to death and had one week until she would have to accept her friend’s poorly matched kidney, or else she wouldn’t make it. She held out, and just before the end of that week, she got the call about an anonymous donor who was a match. My journey felt complete.
I finally met Robin, who is from south Jersey, at my wedding this past Sept. 21. Seeing Robin dancing all night made what was already the most incredible day of my life even more special in ways I simply can’t explain. I’m 28 now, married, still living in my beloved Jersey City with my dog and two cats, working my dream job doing social media and web content in the field of interior design, and generally living a happy, healthy, and love-filled life. I’m continuing to spread the word about living donation via social media and other advocacy work. I recently participated in a documentary that a fellow kidney donor is creating about living donation, called Social Media Stole My Kidney (socialmediastolemykidney.wordpress.com).
Physically, donating a kidney has had little to no effect on my day-to-day life. But mentally, it has been a game-changer. I’m reminded never to take my health for granted and to realize that the things we fret over are insignificant. What matters are health, love, and happiness. Kidney donation isn’t for everyone. I would never persuade anyone to do it. It’s a personal decision that you live with for the rest of your life. If I could, I would do it again in a heartbeat. Whenever I feel like things aren’t going right, I think of Robin at my wedding, dancing her heart out, and I remember what it’s all really about.—JCM