Friday, May 6, 2011

(not) sharing this story with the world

I submitted this piece to the Modern Love column in the NY Times last month. Today I got an automatic response that they weren't interested in publishing it. I can't imagine a more appropriate twist on modern love than giving an organ to someone, but, I'm not the editor in charge.

And so, I thought I'd share it here:

Giving up a Piece of Me

"Were you serious about being tested?"

That text arrived in the middle of a chaotic Thanksgiving weekend. Standing in my dark bedroom, as I read the words my heart started pounding, my hands shaking, my brain went numb for a moment.

Was I serious about being tested?

My brother needed a kidney. And he was asking if I'd be willing to give up one of mine.

For all those years, when I'd casually mention that should he ever need a transplant all he had to do was ask, I never thought that we'd come to that point.

But here we were.

He’d had cancer when he was 9 months old, a tumor in one kidney. Several surgeries and a year and a half of radiation left his remaining kidney functioning at a quarter of full capacity. His body fought a valiant battle for 45 years, dealing not only with this but with diabetes, hepatitis, gout, osteoporosis, high blood pressure, blood clotting issues, digestive challenges but it finally got to be too much. Last summer he started dialysis, spending 3 afternoons a week hooked up to a machine for hours at a stretch. He’d spent months before that having a port installed in his arm, an entrance point able to handle the stress and strain of having blood pumped out of his body to be cleaned and then returned.

The port failed. After four surgeries, one of which ended in a terrifying trip to NYU’s emergency room and an ICU stay, he was told a donor (live) kidney was his best bet. He’d always sworn that he’d never, and I mean never, ever ask for a donation. He didn’t anyone to be put in jeopardy of any kind and with all surgeries come risk. The transplant list, which he’d been on for more than a year, was a long shot. Waiting time for an O positive organ in New York is about 9 years. They were now using a chest catheter for dialysis, a short-term solution at best that’s prone to infection and is less effective than a traditional port.

And so, from this place of no other options, he was asking me to take this journey with him. To undergo months of testing, to face my first surgery, to give up an integral part of my body so that he could live a better life.

Deciding where to order dinner from can be a big decision for me. Iced coffee or hot mocha in the morning can throw me into a quandary. A decision of this magnitude was beyond anything I’d ever faced. For two days I could barely let the idea into my head, it was so unnerving, so terrifying, so overwhelming. But deep down, past the angst, the panic, the anxiety, which are so much a part of me, there wasn’t a choice to make. Of course it was his.

He made an appointment for us to be tested, to see if I was a match.

I haven’t breathed the same way since.

Two weeks later we sat with the transplant coordinator, half listening to way too much information that neither of us absorbed. We’d each had multiple vials of blood drawn. He apologized over and over and over. About the wait in the lab, about the long trip uptown to the hospital, about asking me to put myself through my first operation. I asked him to please stop—there was nothing to be sorry for. I was there because I chose to be. I meant that wholeheartedly even if I didn’t always feel it.

And then, we waited some more.

Two weeks after that got a voicemail that I was a match. As I stood on a noisy downtown street, tears filled my eyes, burning as they quietly slid down my face, I called my brother. No answer. I texted. No response. This news was too huge to hold inside, bubbling up into thrill. By the time I finally got him, I was floating on a cloud of excitement. His response, “Cool.” He was nonchalant, almost seeming disinterested in this potentially life-changing news. When we saw each other a couple of days later there was a celebratory high five. That was it.

We were coming at this from such different places. My brother’s health was so compromised he was almost at a dead end. And the only way I could help was if I was exceedingly healthy. Yet, we were in this together.

It took awhile to establish a communal language that worked for both of us. My full glass optimism drove him crazy. His pragmatism pissed me off. We ended up with light-hearted joking.

Me: “Hey, have you heard I’m donating a kidney?” Him: “Damn, I need one.” Me: “Sorry, you should have asked sooner.”

I nervously asked him if he’d be ok if I wrote about it—he’s always been exceedingly private about his health. He replied that since I was giving him a kidney, I should feel free to write whatever I wanted, and post whatever I needed to post on the transplant blog I’d started to help me cope with all I was going through.

Testing began. I had to somehow accept that at any point, I could be disqualified as a candidate. Grappling with that was almost immediate. Within five minutes of meeting the donor nephrologist, I was told my blood pressure was too high. Turns out the machine wasn’t working properly and all was fine. That was the first of almost too many highs and lows to process.

My former eating disorder was enough of an issue to warrant a spur of the moment psychological evaluation, with three psychiatrists no less, moments after finishing a multi-hour glucose tolerance test, a precaution as diabetes runs in my family. Instead of one or two urine tests, I had five. If only I’d known that you shouldn’t give a sample when you have your period (ladies, please make note of that), I’d have saved myself the weekend hysteria of possible renal or bladder cancer and the invasive testing they thought I might need. I gave 22 vials of blood, did two twenty-four hour urine studies as they forgot to test for something the first time, had an abdominal cat scan to make sure all looked ok.

It was terrifying to talk, or even think about what was going on.  I lost track of which was worse—that they’d discover a serious medical condition I’d have to deal with or that I’d let down my brother. Plus, after growing up in a superstitious Jewish family, it was close to impossible for me to say out loud or even believe that I was healthy. Every time I saw the transplant coordinator’s number on my phone, my stomach ratcheted itself up into a tight knot.

As I got closer to getting the green light I felt ready to go a little deeper and asked my brother how he was doing. He’d been remarkably silent about it all. While I was designing a transplant logo, making buttons, blogging and tweeting and setting up a Sidney’s Big Adventure fanpage on Facebook, he hadn’t said a word. What he then said shocked me. He didn’t understand why I was making such a big deal out of this. It was just another operation. He’d had over 20 so far, he likened it to finding an auto mechanic that you’d trust when you had car problems. And, should I change my mind at any point, no worries. He’d find a kidney somewhere else.

WHAT? It wasn’t like he could walk into Target and pick one up. I was floored. I’d been putting my life on hold to do this, facing testing and surgery and weeks of recuperation. The possibility of blood clots and infection. Pain. Death. Not ever seeing my children again. Not to mention I’d been struggling with outrageous anxiety and emotions careening all over the place.

I didn’t know what to do. As I slowly let go of furious, I started to see that he needed to be in a place of not pinning all hopes on this. It was his life that would radically change. Or not. Not mine. The next day, he called and said thank you. And told me he was planning to turn our transplant logo into a tattoo when the surgery was over, that this was just about the most significant experience of his life and it needed proper commemoration. We’d be able to get post-surgery tattoos together—his gift to me is my first one ever. I’m thinking a circle of Japanese cherry blossoms around my ankle. A humorous, yet typical aside: my mother is far more concerned with the dangers of me getting a tattoo than undergoing abdominal surgery.

As of now, I’ve been cleared for surgery, which was tentatively scheduled for 3/21, a date I’d dreamed before even finding out I was a match. But, after we’d thought we’d been good to go, they decided my brother needed more testing before we can move forward. He’s already seen a hematologist about ways to help his blood clot during surgery—turns out there’s a medication they can administer that will help. His abdominal sonogram and blood tests for liver function all turned out ok. And then, just as we’d thought he’d passed his last hurdle, he’s now got a liver biopsy to contend with, to make sure cirrhosis hasn’t shown up. If it has, the transplant’s off the table.

I’ve been fraying at the edges. Waiting for these last results, believing if all was good we’d get a date, only to find out there’s more waiting ahead, threw me. For three days tears showed up and completely took over. Anxiety crept back in and doesn’t want to leave. Honestly I’m not always sure I have enough left in me to be here anymore. I’d used up the last dregs of my patience and now I need to scrape the bottom of my soul and find more.

Recently, after reading a rather emotional blog rant about what’s been going on, my brother asked why I needed to get so upset, why couldn’t I just accept what was and deal. He can’t comprehend how emotion sweeps me away and overwhelms me at times. Meanwhile, I can’t understand how he takes it all in stride as none of this was particularly important. We are, we always have been, two remarkably different people. We approach life from opposite extremes. In the past we’d butt heads, both sure that we were right, not able or willing to see things from another point of view. I barely kept my temper from flaring as I suggested we stop talking before I lost it. But, this shared experience has changed us. He asked me to wait, not hang up, and we talked it through. We don’t necessarily understand where the other one’s coming from, but now we’ve discovered respect and tolerance that wasn’t there before.

And so, we’re still waiting, in our own ways. Even if this next test’s results are fine, the waiting won’t end. Because his case is so complicated, there are no assurances a new kidney will fit into his body—they won’t know until they slice him open on the operating table. And then, should there be room, all donors and recipients know there are no guarantees the kidney will take. We’d talked about this not long ago. At the suggestion of a friend at dialysis, my brother asked how I’d feel if the transplant failed. I’m not letting that thought into my head. I’m not going negative. I, who can be the most skeptical, cynical person in the room, have faith beyond faith this will work. Because if I didn’t, I couldn’t be here.

I know the reality is, it might not. In the end though, it’s not just about giving my brother a kidney. It’s about giving him hope.


  1. Your brother is such a dude. Girls are different.

    Stay safe through this journey.

  2. Beautifully written. Thanks for sharing your journey. And from someone who will eventually be needing a kidney myself, I'll do a little extra hooping and hollering whenever I get a donor (just for you):)

  3. Beautiful story, Elissa. Most of us don't know what it feels like to be faced with health problems like your brother has. With all the disappointments he has had, it's easy to understand why he's kept a lid on his emotions. By the time this is all over with, you will have given hope to a lot more people than just your brother. You inspire me.

  4. The NY Times loss is now a well written re-cap of the action for the recently arrived readers of this blog.
    Best of luck in this journey.
    Stay strong, stay positive.

  5. I am sitting in my living room with tears streaming down my face. I don't know you or your brother but I know your story so well.
    I was lucky enough to donate to my dad on February 9, 2010.

    It took me a year and a half to do my work up and finally get a surgery date that stuck. That was 18 months of some of the hardest moments and hardest lessons of my life. I have never been very patient and pretty much always been a control freak. This was a process that I could not force to move at my time line and it drove me crazy.
    I was told at one point I would not be able to donate. I remember falling to the floor sobbing, thinking that some how my body had let me down and now my dad would not live and it would be my fault... After about a week of letting that sink in I realized I would not accept their "no". I pushed doctor after doctor, I insisted on a specialist (there had been some concern that I had liver tests come back really high at one point but I had never had a hepatologist see me and say what the problem was) so eventually the doctors agreed to what I was demanding. On January 15th, my 29th birthday actually, they called and gave me approval and a surgery date. I was ecstatic

    My dad has done so well since the surgery. His color changed that very day, the pink returned o his gray cheeks. He lost 18 pounds of fluid the first night. Many of his little daily struggles (always being cold, being extremely itchy) went away immediately. He has traveled in the last year and started playing music again publicly, I am thankful every time I see him that my body was able to heal him.

    You are doing an amazing thing. It is one of the hardest things I ever did but I am so thankful for the journey and the lessens and a healthy dad. It is a source of pride for me

    I have written much more than I meant to here but you moved me today. You probably have tons of people to talk to about this who have already been through it, hopefully you are using as well, but if you ever have questions or want to rant to someone who can relate, feel free to message me at