blood sisters
by judith toy

JUDITH

I picked up the telephone and dialed Carole’s number. She answered with a weary hello. Carole, my good buddy for 20 years, was suffering from Polycystic Kidney Disease. She’d always been a vibrant woman, a woman who’d break into song, mostly Broadway tunes, changing the words to suit the moment—a talented social worker—a generous lover of life. Carole’s father died of PKD when she was a teen, so she’d chosen to remain childless because she didn’t want to pass on the PKD genes. Her brother Marc’s kidneys were failing as we spoke.

“I want to get tested to give you my kidney,” I told her.“Well first of all, the chances are slim that we’ll be a match,” she said. Carole was sick and depressed, about to undergo a botched surgery on her arm to prepare her for the drudgery of hemo-dialysis. Then surgeons would remove her two kidneys which had swollen to the size of footballs. “I have a feeling,” I said. “I don’t want to get my hopes up again,” she countered. Carol had received glib but well-meaning offers of help that had faded to nothing.“Well at least find out if you can receive the kidney of someone with Rh Negative factor in their blood.” “Jude, are you thinking this through?”

“Yeah, I’m sure. I’ll call my doctor.”

The answer came back yes. That was the first in a series of yesses that led to the surgery. But I knew. I knew from the first phone call—no, from my first inner inkling—that I’d be giving Carole my kidney. And believe me, I’m not at all prescient.The first blood tests were thrown out by the University of Pennsylvania Hospital because we didn’t label the vials according to their instructions. The second batch, looking for blood antigen matches, came back good, two out of six possible matches.When I first saw my friend at home in Princeton, New Jersey, after she’d had her kidneys removed and was suffering through dialysis, I hardlyrecognized her as Carole. She looked like an Auschwitz victim—skeletal, eyes huge and drawn by dark circles, her complexion sallow as death. She could barely walk. I had the stark realization that Carole was dying. Certainly her quality of life was very low.

Next I took a series of tests in Philadelphia at the University of

Pennsylvania Hospital. What a comedy of errors! I stayed in a quaint downtown B&B with a dear friend who was doing research at the U of P Archeological Museum. She snored and kept me up all night. The luxurious Jacuzzi feature on the bathtub malfunctioned and flooded the bathroom. On our way to the testing site, we got hopelessly mired and lost in Philadelphia rush hour traffic. But the test results were good. Even the stone-faced transplant coordinator hugged me and cried because the head nephrologist had just told us the surgery was all but certain.When I arrived at Carole’s house in Princeton that night, she was at the dialysis unit. I entered the den and walked over to Lorin, her husband, who was reading his paper. “Lorin, the surgeons tell me it looks like a go.” He grabbed me and his glasses fell off and the newspaper crunched between us as we hugged and sobbed. The next morning, when the final tests came through positive, Carole and I had a similar scene, our hearts full to bursting with gratitude.

The icing on the cake was that I was a candidate to undergo the less intrusive laparasopic surgery for removal of my kidney. In the meantime, birthdays and death and real estate trading went on. In Cleveland, my father was dying at home of respiratory heart failure, and my husband Philip and I were in the process of purchasing a house in Black Mountain. On summer leave from my teaching job, I planned to go back to school soon after surgery. (This took me over the top of the Stress Scale, but I felt okay.) My mother poured out her support for my decision, even though she was in the midst of a struggle to care for my father in his last few days.

I learned that the kidneys exist to ensure that we’re not poisoned by an accumulation of our own waste. While the daily flow of blood through the kidneys is about 425 gallons, a mere thousandth of this is converted tourine. Each kidney’s composed of a million or so nephrons or filters which, if unwound and placed end to end, would stretch for more than 50 miles. I drew a cartoon of my left kidney, the gift kidney, with a face and a gloved, waving hand, and in the voice bubble: “Here ah* come, Carole!” The asterisked note read, “Jude’s kidney has quickly assimilated into the South.” (I’d moved to Black Mountain from the North a year prior to the surgery.)

The surgery itself was a jewel on a chain of profound events. I remember taking the long walk to the Transplant Unit, down what seemed like blocks of narrow corridor at the U of P Hospital with Lorin and Carole’s mother, Claire, and Carole in a wheelchair. Mentally, I recited a prayer from my teacher, Thich Nhat Hanh: I have arrived, I am home in the here and in the now; I am solid, I am free; I am solid, I am free; in the ultimate I dwell; in the ultimate I dwell.

At the desk where we signed in, Carole almost fainted. We were assigned to separate rooms (just in case something goes wrong!), so Carole and I talked on the phone. My dear and supportive husband Philip was absent by my request. My daughters Laura and Halle had arrived from the South, each with a pre-school child in tow, so there was a familial air of celebration in the room. But beneath the festivity was tension, their unasked question: What if this doesn’t work? I’d prepared myself like a vestal virgin using my doctor’s herbal kidney tonic, through diet and exercise, through prayers and affirmations, and through—okay this may sound farfetched but it worked—talking to my kidneys and saying thank you.

The morning of the surgery, my darling daughters administered the herbals and homeopathics prescribed by my dear friend and Asheville physician Sal D’Angio, who had helped me prepare my body for the operation.There was one complication: once they got under my skin, the surgeons discovered an extra artery attached to my left kidney. So for me, the surgery was longer than expected, six hours. In the meantime, the transplant team had prepped Carole in the adjoining OR. The moment Dr.Markmann placed my kidney in Carole’s waiting open abdomen, it began secreting urine! Both of us thrived. While rejection episodes are the norm for transplant patients, Carole defied the statistics. To date, three years later, she has not had a single such episode. I was told the nurses were agog because I refused their offers of morphine. Carole had a tougher go of itfor obvious reasons. Her recovery was long and slow.

In the book, The Divine Secrets of the Ya-Ya Sisterhood, I was touched by the scene of the circle of little girls at night around a fire, pricking their fingers and mingling their blood. I now have the sister I’ve always wanted, a blood sister. Taking the anti-rejection drugs into account, Carole’s enjoying as normal a life as possible; I’m still healthy as a horse. We talk on the phone two or three times weekly, sometimes every day.

The transfer of my kidney to Carole’s body took the work, the skill, the education, the willingness, the generosity and the support of a legion of people. People were praying for us as far away as Israel! I never felt doubtful or fearful or brave or any of the other emotions folks wanted to assign me. The “decision” felt like a simple foregone conclusion—like looking in the mirror and asking if I wanted to give myself a gift

My teacher says there is no self and other. I’m here to tell you this is true.

Judith Toy is an ordained Zen minister who lives in Black Mountain, where she tutors writing, coaches meditation and leads Cloud Cottage Sangha (group of practitioners). This month she will be trained by the WNC Organ & Tissue Donation Initiative (WNCOTDI@Bellsouth.net, 828-296-9708) as a community educator, and will be available as a speaker. Judith encourages people not only to record their intention to become donors on their drivers’ licenses, but to sit down and discuss their wishes with family.
[ pjtoy@juno.com; 669-0920 ]

CAROLE

When I saw Judith for the first time in 1981, I felt drawn to her. Judith believes now that time folded that day, and that somehow deep inside I knew that in the future we’d be closer than close. Over the years, I’ve always loved being with her, and I’ve turned to her in good times and bad. When Judith first suggested she be tested to give me her kidney, I was hopeful, but I couldn’t assume anything because I had to keep coping no matter what. I thought it was a pretty major commitment for her.

After the first blood tests were invalidated by U of P Hospital, Judith was annoyed, and I was afraid she’d back out.The surgery for the removal of my kidneys went well, but the hospital almost killed me when they gave me an overdose of painkiller. It was touch and go. I continued on dialysis. I’d walk into the unit and the smell of chlorine would just envelope me. Dialysis was horrible and painful. I asked Judith for help, and she suggested I dedicate my pain to someone or something that was meaningful to me. I’d taken a photo of the sculpture of the three soldiers in Washington, D.C. near the Vietnam WarMemorial. It had always struck me. You can see the anguish on their faces. I took that photo and started a scrapbook, and when they would put the needles in me, I’d say to the veterans, “Thank you for all you’ve done for our country. If you could go through what you’ve gone through, I can endure my pain.” When it got really, really bad, I’d just say, “God, please help me through this.

”For me, dialysis was a form of dying. Then when they took my kidneys out, my fluid intake was further limited. I remember looking at orange soda, which I never liked, and coveting it. And if you drank too much, the next dialysis session was even more painful. I didn’t assume the transplant was going to happen until it happened. Even today when I tell people I received a kidney from my friend, they say, “Either Judith must be an incredible human being, or you, Carole, must be an incredible friend.”

It’s bigger than both of us. The night before the surgery, the team did a last-minute compatibility test. Out of anxiety, I curled into a fetal position. I wouldn’t believe it was truly happening until they wheeled me into the OR. In the meantime, Judith slept peacefully, assured that everything would be fine. The day after the surgery, the first thing the doctors asked me was, “What do you feel that’s different?”

“I feel alert,” I said. And they were jubilant. They were thrilled with the urine output of my new kidney. I was in a state of shock—terrified to tell the truth. After what I’d been through with the dialysis and the surgeries, I was afraid I’d lose the kidney. Some people have to stay on dialysis for a while after a transplant. Some kidneys don’t work. I remember Judith walking into my room the next day—the loving looks we gave each other. This was the moment of recognition that we were really blood sisters. Our looks went beyond language. She had given me my life back—the chance to be alive and free and not attached to a machine. A miracle had happened between us.

Recently, my mother and brother and I were together for four days, and it was the first time in over 40 years that I felt united—since before my father got sick when I was a kid, because our lives have been so overwhelmed by sickness. Now I tend to live in this day only. My gratitude to Judith, to medicine, to God—it’s so deep. I have a chance to be alive again without having to be attached to machines 12 hours every week. When they say second chance, yes, you get your life back...but I have the extra chance to eat, to quench my thirst, to listen to the birds in the mornings, to feel okay, to be aware of nature, to celebrate and grieve—to experience again all the events of a lifetime. It’s more than a second chance; it’s the best of being alive.

Carole Zissman worked as a social worker for 25 years. She currently lives with her husband, Lorin, in Princeton, New Jersey, where she enjoys playing the piano, reading, and travel. She realizes that organ donation is a very personal decision, but she hopes that people will give some thought to becoming donors posthumously and that they will discuss it with their families. Three months after Carole’s surgery, her brother Marc received a kidney from a recently deceased donor.