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.

Thursday, May 5, 2011

maintaining status quo

Right now all I have to do is stay healthy.  We're smack in the middle of a waiting game and at the end, I need to be in great shape.

You'd think that would be a given but it's not so easy.

My testing was done months ago and things can change. After making it through the entire winter without a cold I finally needed a course of antibiotics to vanquish a sinus infection that had taken up residence. The weather has been careening from freezing nights to flip flop days. I've come home, soaked to the bone, more than once in the past few weeks.

And, my general eat well and healthy mindset has gone out the window. I don't know that I could eat more pasta than I am now. How much hot chocolate can one person consume? Trail mix. Sweet potato chips. Vegan cupcakes slathered with creamy icing. Butter.  I have the munchies and it's hard right now not to indulge.

I haven't been like this in longer than I can remember. I trained myself, hard, to control those desires, to not get lost in food as a way to soothe myself.

But I'm a bit lost here at the moment. There are too many decaf mochas in my day. Too many snacks. Too much time rifling through the kitchen for something that will fill the need that actually can't be filled.

And sliding back into that is not good for my body or my mental state.


It's hard, when nothing's happening, to act like something is. The reality though is that time passing is something happening and I need to get off my snacking butt and pull my act together.

I want my kidney to be in tip top form. I want my body to be as healthy as possible going in to surgery.

So maybe, just maybe, I cut down to one coffee drink a day. Find alternatives to noodles. Go back to embracing olive oil. And pass on indulging in chocolate desserts as often as possible.

I'm hoping early June we're back on track. And I'm back in shape.

Wednesday, May 4, 2011

drama free transplants

The craziness is ramping up again. The additional testing. The delays. The uncertainty. The confusion. The miscommunication.

This time though, I'm letting it wash over me without getting swept away.

Freaking, panicking, getting angry, frustrated, upset, unnerved, anxious doesn't help. Trust me, I've tried them all on. And none of them make me feel better. 

In yoga the other day I picked up two powerful words from two different women. OBSERVE from the one who'd been through a serious illness and had spent months teetering on the edge in the hospital. SURRENDER from the woman pregnant with her first child, facing more unknowns than she'd ever had.

Observe and surrender. Love them. LOVE them.

I'm also learning to let go of unwarranted expectations. Medicine is an imperfect science. In fact, when you find yourself smack in the middle of a situation, there doesn't seem to be anything scientific about any of it. It's messy and full of contradictions. Far more is about personal interpretation than you'd really want in such a serious situation.

Observe and surrender. 

That's all there really is to do.

That, plus hold on tight to gratitude and a half-full attitude.

And there's always shopping.

Monday, May 2, 2011

just an update

For those of you who've been following our saga, the latest transplant date has been supplanted. May 9 became May 23 which, as of this evening, is back to "we'll see."

Yup. We'll see.

I'm thinking June is a nice month for transplants. It's my favorite month, as my birthday is smack in the middle of it. And so, my thank you tattoo can be a combo birthday present. Perhaps I'll get two. Sorry Mom.

Sunday, May 1, 2011

the bright side

For the past couple of days I've been working on a post called "The Donor Who Cried Transplant," which the title sums up perfectly. Usually when I write here, it flows quickly and I'm done. But not with that one. 

It feels like, in the midst of this kidney chaos, perhaps the bright side deserves a shout out. Because, I've discovered extraordinary silver linings along the way.

Last Thursday, after the surgery postponement, my coordinator's leave of absence voicemail message, the donor social worker's leaving for 2 weeks vacation email , and the 8am trip to the lab for blood work that was now pointless I was a wreck. Instead of tackling my huge pre-donation to-do list, Friday stretched out endlessly in front of me.

I texted my brother and asked if he wanted to go on a cupcake run. To a vegan bakery in Rutherford, NJ that he loves. Usually he's so busy he hardly comes up for air. But within minutes we had a plan to hit the road. 

He picked me up on 6th Avenue and we headed out of the city. First time, ever, we did something like this. First we headed to a diner with an extensive vegan menu. He had waffles with blueberries. I had regular French toast with pecans, strawberries, bananas and whipped cream. We shared a pot of pure maple syrup. I never eat like that, but somehow it felt like I was celebrating. Then we hit the bakery, discovering they sell frosting shots - mini cups of the day's frosting selections, with sprinkles no less, for a buck. We both splurged on chocolate. After picking out too many cupcakes to take home, we stopped by a computer store, then checked out discount clothes before heading back to city. 

It was a really nice day. 

In the 5 or so months since this kidney journey began, my brother's become much more a part of my life. Instead of being in touch every few weeks, we're in contact every day. 
Recently Iz mentioned that in spite of the reason behind it, how lovely it is to see so much more of her uncle. 

It is. For all of us. 

And it's more than that. When staring down a transplant, I'm letting go of fears that have bound me for as long as I can remember. After years of a personal subway ban, I take the train up to the lab for testing. Or, I drive. Last week I even drove out to my brother's weekend house with the kids, something I'd normally never consider. 

I headed out, alone on my bike and explored the boardwalk there for hours. 

I'm head-standing in the middle of yoga class with hardly a panicked thought. I've even left the back row, after 6 years of needing to hide there, to move way up front. 

We adopted a second puppy, who's brought endless joy to all of us. And, because of these fuzzy creatures, I'm often outside, usually first thing in the morning, literally having just rolled out of bed. No makeup, hair a wreck, torn jeans, sneaks and a hoodie. And I could care less. 

Biggest, I suppose, is that I'm doing nothing. Well, not exactly nothing. My life is full and my days are busy, but I'm not in the midst of a project. For years and years that would've thrown me into a panic. But now? 

It's fine. 

Wait, there's an even bigger one. Not new but just more present than ever. 

I am grateful. So grateful. Grateful to be a match. Grateful to spend more time with my brother. Grateful that perhaps I can help make his life better. 

Grateful for this amazing man I'm married to, who supports me no matter what. Grateful for my kids, who continually blow me away. Grateful for my sister, who is brave beyond brave, and my mother and stepfather who help me stay grounded. 

Grateful for the amazing friendships I've developed, after years of having none. For the outpouring of love and support that sweeps me away every step of this journey. Grateful for the 2 puppies lying on my lap at the moment who are joy wrapped in fur and cuteness. 

I'm grateful for my body, for being strong and healthy and able to give up an organ. 

I'm grateful for me. In spite the occasional anxiety and the random panic I have never once questioned this decision or believed, even for a second, that this isn't exactly where I'm supposed to be. 

And I'm grateful for you. Thank you, from the bottom of my heart, to all who support me and Dave as we live this kidney adventure.