Saturday, December 31, 2011

year of the kidney

I'm big on year end wrap ups. My birthday is in June and I do it then too—looking back at all that's happened in a 12 month arc. A year can be fleeting on one hand but 365 days is a vast amount of time. In that vein, 5 minutes can change your life. As a person to whom life doesn't come easily, who's spent years struggling with self-doubt and anxiety, who questions, worries, has spent way too much time frozen in fear, looking at the bigger picture helps.

I'm often amazing at what my life actually is, as opposed to how it feels from the inside.

This was the year of the kidney. From last Christmas season when I found out I was a match, through 6 months of exhaustive and extensive testing, endless waiting, more postponements than anyone can possibly imagine handling. There was my very first surgery in June—walking into the hospital as a profoundly healthy person, shuffling out swollen, drugged, in pain, my center shaken to the core. Months of recuperation, of moving slowly, of feeling like I'd never feel like myself. More than any of the above there was the emotion of it all. First and foremost, fear it wouldn't work and that my brother wouldn't be ok. Then there was fear I'd fall apart and not be able to handle it. Fear I'd have a breakdown. Fear I'd be that less than 1% of donors who'd die on the table. Fear I wouldn't make it back to where I was. There was also elation—finding out I could donate, getting clean bills of health from all the testing, the quiet joy of the voicemail saying surgery was on, hearing Dave was ok when I was in recovery, seeing him looking so great 2 days later.

In fact every time I see him my heart fills for a moment knowing what I did made how he's doing possible.

My family was amazing throughout. I can't imagine sending a parent or a child off to surgery they don't need. Iz's 1000 paper cranes and Jack's kidney warrior are 2 of the most precious gifts a person could ever hope to receive. Jon offered to be tested if I wasn't a match. I am married to the menschiest of mensches.

The ability to write almost every day about what I was going through, to share the experience, to hear from people who'd been through this before and share insights with those starting the donation path kept me sane.

I doubted my sanity many times this year. I thought I lost my creativity. I've felt (and have been feeling) that the best is behind me and that the next half of my life is just downhill coasting.

But on the last day of this year I have to look back and give myself credit for doing something so important, so substantial, so amazing that it's way bigger than me. And to give myself time and space to heal on all levels.

2011 was the year of the kidney. And it was a game changer. I'm starting to see I just haven't figured it all out yet. As for 2012? I'm hoping for a bit less drama.

Friday, December 23, 2011


A year ago today I found out I was a match for Dave. My life changed. Both our lives changed. Just about every step of this journey wrought major stuff, whether invasive testing, award-winning anxiety, stress that goes with endless waiting, the utter joy when something worked in our favor, epic frustration, the mind-blowing fear of the unknown. Every anniversary makes me stop and pause and remember. And be grateful for how things worked out. But aside from the actual transplant itself, I think this anniversary is the most profound.

The two weeks preceding were a waiting I’d never experienced before, except perhaps when wondering if my amnio for Jack would be ok. But chances were it would be—it was more of a formality because of my age. This was a total crapshoot. We had a better shot than a random person off the street, but there were no guarantees. And I wasn’t completely sure which way I wanted it to go. Of course I wanted to be able to donate but I can’t say that I was 100% committed. I didn’t know what to expect. I’d never had surgery. We didn’t know if his body could handle it. And should all work out, there were no guarantees the kidney would stick. I’m not good with unknowns and this was staring down a chasm of nothing but.

I knew it would be a showdown with anxiety although from that vantage point I had no idea how all-encompassing it would be. But on the other hand, if I wasn’t a match, then what? Someone’s well-being was in my hands. His future, his health, his life depended on me. And that was out of my hands too. It’s not like I could study and do well on a test. It was all about biology—the blood and tissue types I was born with.

I wasn’t sure how I’d handle either outcome. The invasiveness of organ donation. The disappointment of not being able to help.

A year ago today, when I took my phone out of my pocket I saw a voicemail from the transplant coordinator. I didn’t think of her as mine yet. Part of me wasn’t ready to listen so I walked a few blocks, trying to breathe deep and clear my mind for was next. She said, “Good news!” and proceeding to talk about tissue and blood cross matching and next steps. I couldn’t quite process it. My hands were shaking. I started to cry. I was relieved. First. That I’d be able to do something. That Dave could hope. That perhaps he’d find a road to healthy or at least healthier. And then joy washed over me. I was jumping out of my skin excited. I couldn’t wait to tell him only he wasn’t responding to texts or answering his phone.

He was nonchalant when I got ahold of him moments later. It took a long time to truly understand and accept how profoundly different this experience was for the two of us. Throughout the next six months it was rare to find us feeling the same thing at the same time. And that was part of the process too. Acceptance. Understanding. Tolerance.

A year ago today my kidney became my brother’s. I didn’t think of it as mine anymore. It was something I was housing until it got to be where it was supposed to be.

What a gift to look back from this place of knowing it all worked out and that he’s better now than anyone could have imagined. I’m crying as I write this. Sometimes, rarely really, my heart breaks wide open and I know what an amazing thing I did. 

Friday, December 9, 2011

a little synchronicity goes a long way

I'm a big fan of synchronicity. I love order. Making sense of things. The bigger picture. That's my design side—take all sorts of unrelated stuff and finding and/or creating common threads and structure.

I love that the transplant was 6 months to the day I was first tested. I love that the surgery was 6.6.11, a date with a lot of balance. And in the twisted world of Elissa Stein numerology (I assign all sorts of random significance to numbers), the sixes were great as both my and Iz's birthdays are in June (the 6th month). 6 minus 1 equals 5, which equals May, the month Jack and Jon were born in. And 6 plus 1 is seven, which is considered a lucky number, plus Jack was born on the 7th. Good all around.

Logical? No. Except in my head. Which leads me to . . .

Yesterday Dave and I traveled out to Three Kings Tattoo in Brooklyn for a consultation with the one artist I've found (after lots and lots of research) whose work completely blew me away. We went over the too many reference images I'd brought and talked about what it was I'm looking for. Her next available date was January 12. We booked an appointment at 1. It was enough to groove to that:

1.12.12@1 - balance and symmetry all over the place. Then this morning I looked back on my calendar to see what was going on a year ago, that date.

Turns out it was my first visit to the nephrologist after finding out I was a match. My first anxiety attack since I'd started meds the spring before. 4 hours of consults and conversations with my transplant coordinator, nephrologist, social worker, advocate and then time logged at the lab for 9 more vials of blood to be drawn.

It was a day that stretched me into places I hadn't been before, forced to confront issues almost too much to grapple with.

1.12.11 was one of the most intense, challenging, nerve-wracking, soul-searching, terrifying days of my life. I'm thinking getting my thank you tattoo on 1.12.12 will be an awesome way of celebrating all that's gone on in the past year.

Thanks Dave. And Annie.

Wednesday, December 7, 2011


It's been six months and a day since I donated my kidney. I feel healthy, fine, stable, more grounded than I did for a long time even before the whole transplant journey started. I've been off Lexapro for a couple of months and while I'd been terrified to stop, I feel much better now than I did before.

I've been at yoga four days in a row, generally practicing up front instead of hiding in the back. My current haircut's a good one. The drama of NYC high school applications is on the back burner for now. At the moment, except for the last minute pressure of holiday gifts, life is relatively mellow. I gave up coffee—decaf—a few weeks ago and the hot chocolate I'd been substituting every day this week.

I'm writing this on my one day old mini macbook air. And I have any number of creative, intriguing, challenging projects I could dive into and make happen. 

So why am I so miserable?

The fatness that ruled my life for so many years is back. Could be the residue of all the half and half and sugared drinks I'd been living on. Could be some serious pms kicking my butt. My period's late and I'm bursting out of my skin. Could be that it's all in my head. I spent years in this place of feeling so badly about myself I'd create reasons to beat myself up.

I'm just not sure why I'm back here.

A significant part is that I'm not accomplishing anything, not in the way I had been for so many years. I started writing books before Iz was born and have had projects in the works on some level from then until FLOW. In the 2 years since that came out? Nothing. Except for parenting and volunteering and sporadic design work and donating an organ. Nothing creative to sink my teeth into, to get lost in, to research and shape and explore.

I could write the graphic novel/movie that Iz is so desperate for me to work on. I could develop the kidney book/one woman show a friend of mine has graciously offered to direct. I could work on the documentary series another wants to partner with me on. I could pull together the advertising book that Iz and I brainstormed the other day. I could delve into the yoga book that so many think is a great idea. I could redo my website. Rebuild my design business. There are so many viable ideas sitting in front of me to choose from.

But, I can't. 

I can't do anything. I bought this laptop as an impetus to start again. To make a statement to the universe that I'm ready to have my life back. My creativity back. The part of me that flows, that gets lost in the zone, that has ideas sparking to life day and night. 

I don't want to be this person anymore. The one who lives in grey shapeless t-shirts. Who has nothing interesting to say. Who's jealous of other people's apartments, jobs, clothes, vacations, relatives, skin, thinness. 

What I should be is proud of all I've done. Instead, I'm feeling like a loser for all that I'm not.

Tuesday, December 6, 2011

6 months out

6 months ago today my brother got his new kidney.

To celebrate this auspicious event we met for Vegan Treats in the east village this afternoon—he had cheesecake, I had death by chocolate.

He booked a consultation for my thank you tattoo, with an artist in Brooklyn we both think is terrific.

Our respective kidneys are working hard and doing great.

I was thinking today that I am nothing but grateful that I was able to give Dave a kidney. To be able to help was a tremendous gift.

Thanks bro.

Thursday, December 1, 2011

a kidney moment

Last week I had my 6 month post op visit with my surgeon. Everything looked great. He was super impressed with how my scars are healing, with how my life's gotten back to where it was, that my blood pressure was back down to normal range. I went for blood tests, my first in months, and asked that he let me know my creatinine level - an indicator of kidney function. Healthy for a woman is .5 to 1.1 and I wanted to be under 1.  Not that this is something I can control but there you go. 

I got an email that it was .9. Perfectly respectable. Higher than it was when I had two kidneys on the job but I'm not in any way complaining. I posted it on Facebook and my brother responded that our levels matched - he was .9 as well. 

It was a moment. 

Knowing these two kidneys, my current and my former were working at the same level blew me away. Enough time has passed that the transplant and all that we went through is hard to remember. How sick he was. How scared I was. How tenuous the entire situation was. From this place I know many didn't think it would work.

But here we are. With two healthy kidneys chugging along and doing the same job. In different bodies. 

Moments like those I believe in miracles.