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Having skin in the game. Literally.

Post-transplant kidney buddies, Anne & Hamed

(from address given at Georgetown MedStar Transplant Living Donors dinner, 11/3/2016)

I want to introduce you to my cousin Roey, who is like a big sister. We share the same birthday, and have spent as many Christmases and birthdays together as we can, whenever we are both in the same country. Roey is the mother of Hamed, whose name means ‘little Mohamed’. Hamed was born in Guinea, and was fiercely welcomed by his mom, Roey, and his father, Mohamed as their beloved son, after 4 heart-breaking miscarriages. Hamed was brought to this country as a lively 2-and- a-half year old, Madingo-speaking,exuberant friend of everyone he met and at home, wherever he went.

His first words upon meeting me, his self-appointed godmother, in Ambler, PA, echoed back my own: ‘I SEE you! I SEE You!” Roey is kind of a big deal in the Peace Corps, and has been stationed mostly in countries in North and West Africa, where she is the program/training officer for Peace Corps. My husband and I visited them in Morocco, then they moved to Benin for a two-year term, when Hamed was 15. It was almost two years ago in Nov., when Hamed and Roey and Mohamed were medivacked back to the U.S., to Georgetown Hospital, where these doctors diagnosed Hamed in late-stage kidney failure. Even though his feet had grown to a size 15 shoe, and he was hovering around 5’ 11, his kidneys had never developed when he was sick as a baby, and now as he was about to enter his teenage growth spurt, these kidneys could not grow to support his beautiful growing body. I took a train and met them here at the hospital. The nephrologists explained about how he would need to be put on the transplant list, and how live organ donations last much longer, and how much more successful the transplant can be with a live donor.

I knew then, even before we confirmed our blood types or tissue types, that we would be a match!!!! And indeed, we were. In the following weeks before Christmas, I was staying with Roey and Hamed in a hotel D.C. for the follow-up testing when we got a call at 3 a.m. that they had a deceased donor kidney, and would he come in to be prepped as the stand-by recipient, in case the recipient who was next on the list didn’t work out for some reason… and I said to Roey, ‘Tell them no! Take the next person waiting on the list. I will be the living donor. We will be a match, and Hamed will get a live kidney transplant… my kidney and soon!’ and so Roey took a deep breath, said a fervent prayer, replied ‘no thank you’ in good faith, and our transplant surgeries were scheduled for early February.

They keep asking you right before you go into anesthesia if you would like to change your mind about going through with the transplant donation. They also ask if you would be willing to be a kidney exchange donor, in case we weren’t compatible. And of course I did agree to that, but I knew we would be a match, just like that very first time we met, and Hamed said back to me, “I see you! I see you!”….. You see, it’s not my mind that didn’t change, it was my heart that didn’t change, the heart.. that sees inside each other, that recognizes one another as family, that knows we are all truly connected, a part of each other already, that heart that knew we would be a match… we were a match the day we met and saw each other! No, Doctor, I don’t want to change my mind about going through with the operation. Let’s do this!

But what I want to focus on… is how donating an organ changed ME. I had the privilege of saving someone’s life… someone that I love. So really, everything else in my life from here on out is just gravy. My purpose, my bucket list…. Check! I’m really good to go. I don’t wonder what my purpose is….. it was to show up and see the opportunity to save someone’s life….. “I SEE you!”

And guess what? That opportunity is ALWAYS there….. whenever there’s a disaster… whenever there’s an emergency…… the shooting at Sandy Hook, 9-11, the Pulse nightclub shooting…..we’re reminded of that opportunity, because people respond. One of the first ways people show their outpouring of generosity and willingness to sacrifice…. Is to give blood. People give blood wherever they are, in the hopes that those who need this lifesaving organ. And blood is an organ, in the hopes that those who need it will get the blood they need, along with the surgeries, the doctors, and nurses, and anesthesiologists….expertise and life-saving experience… all of these will work in concert, in a big collaborative work of art…. The art of saving lives- A collective art. And they don’t know the people whose lives are threatened in that emergency. And yet there are people EVERYWHERE that are willing to invest part of themselves… their own blood, in good faith that our own wonderful vessels, this human body, will generate more blood, and that if we ever need more ourselves, that some other anonymous donor will donate their own for our sake. Live organ donation is just an extension of that same spirit and willingness, and a little more involved than donating blood, but worth every bit of the experience, like a baby’s birth is worth the hard labor.

And live donors are just like the doctors, nurses, anesthesiologists, everyone working so fiercely at the Georgetown Medstar, the rest of the co-collaborators and artists who are giving of themselves… to save someone else’s life. And isn’t it amazing that we really only need one kidney, or part of our lung, or pancreas, or that we can automatically generate more blood, and generate capacity in one kidney or lung to keep a body strong and healthy and living well…..and healing… continually….. what a miracle we are, getting to occupy our magnificent bodies, these Divine works of art! What a gift when we get to give some of our own divine vessel for someone’s use and life.

For me, It is the most liberating thing I’ve ever done…..and to live like every day is a bonus round…. Like every other accomplishment, triumph that I achieve, is just icing on this cake… that I’ve gotten to share a part of me, with someone I love very much… and now get to watch blossom, and grow, and get his driver’s license, and finish high school, and go on to college….. THIS is THE life. But it would be enough to know my kidney saved someone’s life… even if I didn’t know the recipient…’s a total bonus that my heart knew we would be a match… and said, in this particular emergency, looking at this particular beautiful young man… I see you! We are grown of the same heart, different genes, different racial construct, but we in essence, are a match….physiologically, yes…but the knowing that…. Came from the heart.

Now I'm work to change the world of Raleigh N.C., where Hamed and Mohamed lives, and this country that is his home, to ensure that it is safe for this precious young, tall man of color to continue to grow up in…. to drive around in, with his own driver’s license, sporting a body that contains our collective work of art, a HUGE investment of Medstar Georgetown Transplant Institute, of life-saving surgeries and follow-up care, and tests, and ultrasounds, and one of my kidneys. You see, I don’t worry that I will be shot at while driving down the road, or on a college campus, or going to spend Christmas in my entirely white neighborhood, but I do fear that Hamed might be. I fear that the color of his skin is a threat wherever he goes, in this culture and country we share as our home. The reality is, every young man and every young woman is a collective investment of generations of people, and life-saving medical institutions, and doctors, and nurses, and midwives, and educators, and parents and godmothers and advocates….. and yet it’s not enough to keep them safe in our country, is it?

We need to honor those sacrifices and investments and generosity of spirit, and determine collectively to change the systems that harm and do violence to innocent people, people who are matches of the heart, donors of blood, donors of organs and recipients…. all of us will be patients at some point in our lives, invested in one another.

I SEE YOU! I SEE You. You are now part of our collective art. Let’s change the world. Every change we can now make, together, is gravy. We’ve already saved a life together, everyone in this room. We’re good now, whatever happens! I SEE YOU! I SEE YOU! I CELEBRATE YOU. I appreciate YOU. I SEE YOU!

Thank you for the honor of sharing this privilege with you. Hope on, hope on, beloved neighbors. We’ve all got skin in this game of life now, haven’t we?

Photo: Brian A. Pounds, CT Hearst Media

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