The Kidney Sellers: A Journey Of Discovery In Iran – Book Preview


Book Cover for The Kidney Sellers: A Journey of Discovery in Iran

 Prologue   

Haaj Khanoom, “one who has been on a pilgrimage.” It was an expression of respect from a young man at the Vakil Bazaar in Shiraz, struggling to pass me with a wooden flatbed cart overflowing with cooking pots. He was right. I was on a pilgrimage—a pilgrimage not to Mecca or Jerusalem, but to Iran—in search of a solution to a serious medical ethics problem: How can we solve the U.S. organ shortage? How can we save the more than a hundred thousand Americans who need organs right now? Might Iran, of all places, hold clues to the solution?

In Iran scarcely a week, I was starting to feel comfortable—maybe a little too comfortable, given what would happen to me later that day at the Vakil Bazaar. But things hadn’t started out that way. In the beginning, the thought of going to Iran seemed preposterous. An American woman doing research and filming without permits in one of the most repressive, anti-American regimes in the world? Although my fear of going to Iran was significant, my compulsion to find an answer to the organ shortage ran deeper. There was little anyone could do to dissuade me from traveling to find the truth about Iran. Were the rich exploiting the poor? Was the government forcing people to sell their kidneys? Were drug addicts selling their kidneys to support their habits, or worse, forcing relatives to do so? Were kidney sellers dying for lack of post-operative care? And were the desperately poor selling their kidneys only to find themselves in more debt than before?

From Chapter Three

  Inside the airport, I was drawn to the families in the arrival area. They bobbed up and down, straining to see past the men waiting in front of them. The women wore dark tunics, slacks, and headscarves with an occasional colorful exception. The children were like kids almost anywhere, with both girls and boys wearing boldly colored coats and boots, but all the little girls also wore headscarves. Many of the women were carrying extravagant bouquets of flowers: Some blossoms were familiar, some unfamiliar, most tied with trailing ribbons. All were worthy of a wedding (or funeral), and the scent of freshly cut flowers permeated the airport. I was struck by the kaleidoscopic energy—only a few sedate chador-wearing women were among them (chador in Farsi literally means “tent”)—as the crowd swayed with anticipation. I wanted to see how they greeted their relatives and friends, but I didn’t want to lose Dr. Bastani, so I hurried after him as muffled squeals of glee burst from the women behind me.

  Customs officials escorted us to a special room where 50 or so other conference attendees waited—MESOT organizers had paid a special fee for us to receive the white-glove treatment. Neatly, uniformly dressed men in black jackets with silver buttons served us tea and apologized for the wait as we enjoyed an assortment of lemon- and pistachio-filled tarts. We met other conference participants, mostly from Middle Eastern countries. In total, tea was served four times between our arrival in Tehran and our arrival in Shiraz.

  After my second glass of tea, as I began to wonder where the bathrooms were, a man in a dark blue uniform with official looking insignia approached us and asked me—but not Dr. Bastani—to follow him. I glanced nervously at Dr. Bastani, but he just motioned with his hand that I should go. What now? I thought. Why me and no one else? But as I was escorted out of the lounge, more uniform-clad Iranians, escorting two other conference attendees, joined us. I was relieved not to be the only one singled out and soon learned the others were also American—well, at least one of them was because he kept nervously repeating under his breath in English, “I knew I shouldn’t have come; I knew I shouldn’t have come.”

  We walked down a small, dark corridor to a door with an official-looking Farsi sign that I couldn’t read. I imagined it said something like “Do Not Enter—SAVAK,” referring to the Iranian secret service under the Shah, which is known as the “SAVAMA” under the new regime, the “reformed” secret service under the Grand Ayatollah Khomeini, which is just as brutal, if not worse.

  Both of my companions looked pale, especially the one still muttering under his breath. My heart pounded too, but unlike the others, I went through the door with my head held high, grinning at the guard on the other side of the threshold. I later learned to reconsider smiling at anyone in public, particularly men, because it is a cultural taboo in Iran for women to smile at men they don’t know. Even making eye contact can be considered forward, but at the time it seemed like a good idea. The stone-faced official, who stood behind a high counter with glass panels, ignored me and requested our passports, taking those of the two men first. The official examined them one at a time, glancing up briefly to see if the faces matched those in the photos, and returned them. The uniformed men who had brought us there then motioned us to follow as they led us back to the lounge.

  I was almost disappointed. What, no fingerprinting, no questioning … no getting hassled for being American? In my heightened emotional state I was braced for a dramatic confrontation, but what I experienced was a kind of bureaucratic officiousness that could have happened anywhere in the world. I had encountered ruder treatment crossing the border into Canada—and would once again, when I tried to travel to Toronto shortly after returning from Iran—and Canadians are famously polite to everyone. But my introduction to Iran was entirely routine. So my being pulled aside by uniformed men was not the stuff of high drama as I imagined it might be. At least on the way I noticed where the bathrooms were.

 From Chapter Four

  My presence was a necessary evil. This research was my idea, and because I didn’t speak Farsi, I needed to record as much as possible for future translation. But my being a woman helped: clad in “uniform” (the standard hijab, long-sleeved dark tunic, and long black pants worn by most young professionals at work) I blended in quite well. And because it wasn’t culturally acceptable for anyone, particularly men, to do more than acknowledge my presence when Dr. Bastani was present, my camera and I were generally ignored and quickly melted into the background.

  Dr. Bastani began with his usual opening: “Hello, my name is Dr. Bastani. We’ve come from the United States to conduct interviews regarding the process of kidney transplants in Iran.”

  Ismail shrugged and Dr. Bastani gave me the go-ahead. As I set up the camera, Ismail watched me with a mixture of uneasiness and curiosity, but Dr. Bastani skillfully redirected him. “Don’t worry about the camera; just talk to me.”

  Now, behind the lens, I could take a good look at Ismail without violating any social norms. He was young, maybe 25, with wavy black hair, intense eyes, a faint smile, and a silver wedding band on his left hand. His khaki-colored pants were frayed at the cuffs, but his sweater—an open crew neck striped in light blue, navy, and white—looked new. The sweater seemed out of place given how warm it was, but his black open-toed sandals did not. His hair was neatly cut, slightly dulled from working in the sun. He had a mustache of respectable thickness, but his beard was only stubble—the Muslim five-o’clock shadow so common in Iran.

Dr. Bastani considered becoming a surgeon, but instead specialized in nephrology so he could have more interaction with patients. That Dr. Bastani is a people person showed in how quickly he put Ismail at ease. As they spoke, Dr. Bastani began to translate for me, but I told him there was no need to interrupt the flow of conversation. I had everything on tape, and he could tell me the highlights after the interview.

  Dr. Bastani was totally focused on the task at hand, barely glancing at his notes before leaning into the discussion. Their melodic banter reminded me of French or Italian. I let the sound of their voices wash over me as I took mental notes of their tone and manner of speech; Ismail’s posture, dress, and mannerisms; the room and its smells; or any other goings-on around us the camera might miss. This was why I had come to Iran!

  “They told us that you want to donate your kidney. Would you introduce yourself and talk to us?”

  “In the name of God, my name is Ismail. I want to donate my kidney because I have troubles in life and financial problems.”

  I couldn’t help but wonder, when Dr. Bastani later told me what Ismail had said, if his honesty would cost him the opportunity to donate—Shiraz forbids non-altruistic kidney donation, and Ismail had admitted he needed money.

  Unlike almost all of the other potential donors we spoke to in Shiraz, Ismail didn’t know he was supposed to lie about his motivations. Unfortunately, one of the Anjoman administrators was present when Ismail shared his financial woes:

 I’m just a laborer; I do whatever job I can find—with my problems in life, I have to. It’s almost winter, and I can’t save enough money; life is so difficult. I can’t ask somebody every day to let me borrow money. That is why I have to give up part of my body. It is for my wife and child.

   Ismail was in debt to family and friends, and his parents and in-laws were also barely scraping by. He was hoping for five or six million tomans*, enough to purchase a used car to start a taxi business like his father’s. Incongruously, the Anjoman told us the going rate in Shiraz for a kidney is four million tomans, three million from the recipient in addition to the one million provided by the national government—information they willingly shared with donors and recipients though they also informed them that they are not allowed to admit to any money changing hands.

  “What is your hope for the future?” Dr. Bastani asked Ismail.

  “My hope is that I am able to earn a decent living for my family, so I don’t need to ask anybody for help. I need to earn bread for my wife and child so I am not ashamed of myself in front of people.”

  “Do you think donating your kidney for money is a good way, or would it be better if, as in other countries, it were illegal to donate for financial incentives?”

  Ismail blanched. But as the color incrementally returned to his face, he shifted forward in his chair and continued in a steely tone, “What should a poor laborer do? When our society is not helping its young people, you have to sell your organs. Other countries probably help their people somehow.” His voice wavered then regained its resolve. “Otherwise when I am hungry and have no money, I am going to become a thief. … I can’t predict what will happen when someone runs out of money. What’s left? They go stealing or killing for money.”

  Dr. Bastani asked what Ismail’s parents and in-laws thought about his donating a kidney. Ismail replied that it was none of their business, but also that it would be hard to keep them from finding out.

  Dr. Bastani probed further, “Why don’t you want them to know?”

  “Helping a sick person get well is surely a deed praised by Allah,” Ismail said, but “They will know I’m a failure for having to resort to selling part of my body. It means I’m not a good provider, not a good man.”

  When I saw how upset Ismail was getting, I asked Dr. Bastani what was going on, and he translated for me. With Dr. Bastani’s help, I wanted to know why Ismail’s wife didn’t donate instead. Ismail responded that she had the baby to take care of and, as the man it was his responsibility to bring in money, not hers. “Besides, people will think badly of her too—like, what will she sell next?”

  There was a knock on the door, and Nurse Ehyakonande told Ismail that his wife was there. A young woman in a saffron-colored headscarf opened the door a crack, and I saw a baby girl, maybe 9-10 months old, dressed in a pink jumper, chewing on her own fist. The baby gurgled. The woman scolded Ismail, while instinctually bouncing the baby on her hip. He literally leapt out of his seat, rushed past us, and left the Anjoman, wife and child in tow.

  I must have looked puzzled because Dr. Bastani quickly filled me in. “Something about, ‘Why was he taking so long?’ and that the baby needs milk.”

 Also from Chapter Four

 Dr. Moeini, like several women throughout my trip, pulled me aside and asked if I needed anything: shampoo, deodorant, feminine products?

  “Yes, I need chocolate,” I joked with a wink.

  She gave me a knowing smile.

  “No, no,” I protested. “I don’t need anything. I’m kidding.” But the next morning, I found a shopping bag outside my door. I hesitated. Sigrid, proceed with caution—there could be something dangerous inside. Poison gas? A bomb? Then I glimpsed a dark brown and silver wrapper that gave Dr. Moeini away: a Hershey bar. The bag contained a dozen assorted candy bars, most with packaging immediately recognizable as Mars, Twix, and Hershey’s. Dr. Moeini had left a note in Farsi, probably “It was nice meeting you. Bon appétit!” I smiled from ear to ear and bit into a Snickers before retreating to my room to take inventory.

From Chapter Five

  At first glance the hotel seemed innocuous, no different from similarly priced hotels in Europe. My impression soon changed, however, putting the Alborz more on a par with the lodgings I’d experienced when I lived in Argentina as a child. A piece of plywood that connected the street and the entryway bowed with every step; beneath it, the sidewalk was crumbling and overrun with the weeds of its undoing. A green indoor-outdoor carpet like a Putt-Putt green that had seen better days lined the steps. Once inside I saw a small, dark, paneled reception counter with a Formica top to the left, followed by a café of four small square tables. Across from the entrance was a heavy, black wooden bench under a mural of a peacock and to its right, a small caged elevator, barely big enough for two, let alone luggage.

  I braced myself for a bumpy ride. The porter strategically placed my suitcase between us and clanged shut the exterior accordion door. With a measured yank to build momentum, he slid the elevator door shut with a rubber-suctioned thud. He pressed the brass button for the third floor, and we lurched upward to the cling, clang of chains and pulleys. The elevator stopped, and the porter drew open the door and sighed. The doorway was almost completely between floors, a kind of no-man’s-land. Above the divide, I got my first glimpse of the floor where I would be staying: more putt-putt green carpet and a heavy, once-white door with numerals that I couldn’t read. (The Hindi numerals used mostly in the Middle East are not like the Arabic numerals we use.) The elevator door reverberated as the porter shut it with measured exertion.

  We travelled down to the second floor and up again, but no luck: Three feet still separated us from the actual floor. The porter hesitated. He can’t possibly expect me to climb through the opening, can he? I’m adventuresome, but really … is he going to push me from behind if I don’t have the strength to pull myself up? I gave him a look that said, “Don’t even think about it.” Resignedly we headed back down. On the way, he tried the second floor, but no luck there either. The floor beneath our feet hit the lobby level with a resounding bang, and I was relieved the hotel didn’t have a basement. I got out and gladly followed the porter as he begrudgingly plodded up the stairs. 

Also From Chapter Five

  My excitement about the interview got the better of me, and I arrived half an hour early. I didn’t want to impose, so I decided to explore. I walked along Ayatollah Mohaghegh Damad’s street, which, like most residential streets in Iran, was flanked by two sets of high walls with doors opening into individual courtyards. Occasionally, at the end of one wall, there would be a few feet of narrow alleyway before the next wall. Through one gap I could glimpse Tehran in the valley below, shrouded in a mist of its own making.

  I was enjoying the view when a buzzing caught my attention, then a rank odor. Across the alley, two sheep’s heads lay next to an overflowing dumpster. Swarming insects conjured up images from Lord of the Flies. The stench drove me on, but I couldn’t escape the feeling that someone was watching me. I scanned in all four directions, thinking I might have missed someone standing in a doorway. Then I looked up. There they were, two German shepherds walking along the top of a 20-foot wall—no fence, no owner at the other end of a leash, just the height of the wall between me and the dogs. I stood transfixed, looking from one dog to the other, trying to assess whether they saw me as a threat. I felt an odd desire to converse with them in Farsi, fearing my American tones might incite an attack. When they resumed pacing the wall, I quickly crossed the street and started back toward the ayatollah’s house. I felt their eyes on me the whole way. I stayed steadfastly fixed on my course, moving deliberately and steadily so as not to provoke them.

From Chapter Seven

  As I struggled with my bags outside the airport, I became officially annoyed. I dropped one of my cases on the way to the car, and the driver, Mahmud, just watched. Once I made it to the car, Mahmud opened the trunk but then stood idly by while I wrestled my luggage and equipment into the trunk. Then I opened my own door and got into the car. Ordinarily, being treated like Dr. Bastani’s porter didn’t rattle me, but my tolerance was worn thin after spending much of the night transferring my camera footage to multiple portable hard drives so we could leave copies behind with friends for safekeeping—a precaution in case I was robbed or the authorities confiscated my equipment.

  Once we were all inside the car, Mahmud proceeded in silence. Dr. Bastani was still preoccupied with making phone calls, so I let my mind wander, remembering a time when I was a child in Istanbul with my parents. We were walking down the street on our way to the Hagia Sophia when the entourage in front of us stopped abruptly, causing a traffic jam on the sidewalk. Three women in line behind a man all came to a halt, and we watched as the man turned, put out his foot, and pulled up his trouser leg. The last woman came forward, knelt with one knee to the ground, tied his shoe, got up without looking up and returned to her place in line. I glanced at my mother in bewilderment. She winked at me and said, “Not so bad if you’re wife number one.” My father shot her a glare as if to say, Are you sure she’s old enough for a joke like that?

  My mother ignored him and continued, “When your father and I were in Morocco after the War, we saw men walking with their wives and the order was reversed: woman, woman, woman,” she paused for emphasis, “horse, and then the man.”

  “Why?”

  Without looking at me, she answered, “Land mines.”

  A chill ran down my spine, and I could feel my father gape at my mother in disbelief. The child is only eight; why are you telling her such things?

  But my mother was wise in her own way. She smiled at me, and then as she turned and smiled at my father, said, “So Sisi, when the time comes, make sure you marry the right man.” She looked pensive for a moment. “Not all Muslim men disrespect their wives any more than all Christian men are drunkards who beat theirs.”

  Her words made quite an impression, which I’m sure was her intention, but she hadn’t been totally forthcoming. I learned later, while volunteering at a battered women’s shelter in Alaska, that abusive relationships exist in all countries and cultures, but in some it is definitely easier for the woman to escape than in others.

Also from Chapter Seven

  Hamed was young, 28, but looked barely older than my own boys who are in their early 20s. His tight dark-brown curls and large doe eyes with thick lashes projected an innocence that defied the severity of his grief. He never smiled; he kept repeating that he had to do right by his wife.

  Two months earlier, Hamed’s wife had lost her sight in an accident while riding on the back of his motorcycle. I thought of the many couples I had seen weaving in and out of traffic on their mopeds and motorcycles, often with a child wedged between them and none of them wearing helmets. Once I saw a man driving with an infant on his lap, holding the baby in place with one hand and steering with the other. An involuntary shudder shook my frame. “Dr. Bastani, was anyone else hurt? There wasn’t a child, was there?”

  “No,” was the reply, and I let out a sigh of relief.

  To try to repair his wife’s vision, Hamed had already spent eight million tomans beyond what his insurance would cover. His wife’s doctors suggested that taking her to Germany was their only hope.

  “So now you would like to donate. How much do you think you can get from the sale of your kidney?

  “Well, I don’t really know, but the more I can get the better. I’ve three million in loans, but I’m still about nine million short.”

  Dr. Bastani pointed out that the going rate for a kidney is only five million tomans.

  “Well, then I will still need to think of a way to get the remaining four million.”

  Dr. Bastani inquired what Hamed would do if selling kidneys were illegal in Iran as it is in other countries. Hamed’s face went ashen, and in a soft, defeated tone he said, “Well … I don’t know. I would have to sell my successful spice shop, which is my only source of income. There would be no other way.” Dr. Bastani told him not to give up hope. There were charities that might be able to help, or maybe he could ask his family for more money.

  Later Dr. Bastani explained to me that Hamed’s wife lost her vision due to a brain hemorrhage caused by the accident. Dr. Bastani wasn’t optimistic that the German doctors could help recover her vision after so much time had elapsed, but we both understood Hamed’s determination to do everything he possibly could to help his wife even if her chances of recovery were slim. What else could he do? Most likely he would be selling his kidney and spending money on a futile trip to Germany, but his conscience demanded it.

  Mashhad is a city that brings out the best in people, and the Mashhad Anjoman is lacking in neither funds nor initiative. I hoped that in one way or another, the staff could help both Sara and Hamed overcome their financial difficulties, perhaps by working in conjunction other charities or government services. That night I dreamt of Hamed leaning over his wife in a hospital bed in Germany. She blinked and strained to see him through vision blurred by tears. I could see the relief creep over his face: muscles tired of frowning slowly released their tension as he smiled tentatively, leaning over to kiss his wife, afraid to believe what he was seeing was true.

  I held my breath when I heard back about follow-up interviews. Was Hamed among them? No—the phone number we had for him, like most of the numbers of our interviewees, was no longer valid.

From Chapter Nine

Some of my greatest fears about the alleged backwardness of organ procurement in Iran were confirmed when we arrived at Kermanshah’s Imam Reza Hospital. We were escorted into a conference room to witness the evaluation of potential kidney donors. In Shiraz we had watched a review session for recipients, but I had not experienced such a session for donors, so I was eager to observe.

  In Shiraz, a nurse had ushered in potential recipient for evaluation one at a time, seating them in a chair facing a panel of half a dozen doctors. Each recipients looked worried, forlorn, and intimidated, but all left looking relieved. They were informed that they were in fact candidates for a transplant and that unless they could find relatives or friends to donate, they would have to be patient and wait at least six months for a cadaver kidney before they would be allowed to ask the Anjoman for help in finding a living, paid donor.

  The donor evaluation I witnessed in Kermanshah was shockingly different. The physicians sat around a conference table discussing potential donor files, then requested that a donor be brought in and told him to stand in front of the room and take off his shirt.

  I whispered to the physician next to me, “Should I leave?” After all I was the only woman in the room, and they had just asked the donor to partially undress.

  He said, “Oh, no. He knows this is a medical exam.”

  I watched one of the doctors get up and literally poke the donor—I guess he technically was palpating his abdomen, but it sure looked like poking. The donor flinched a little and never stopped staring at the floor. Then the doctor returned to his seat, and the physicians continued their discussion while the donor just stood there, staring at his feet. He looked up to answer a question, and our eyes met. I sensed his humiliation and felt horrible. I tried to show him some respect by giving him a slight smile, then making a deliberate show of turning to the papers in front of me—I wrote the words “meat market.” I did not look up again until I was sure he had left the room.

From Chapter Ten

After spending a few weeks catching up with family and friends, I focused on getting my video interviews translated and on reconnecting with Steve Lessin. Had he found a donor during the two months I was gone? He wanted to hear about Iran, and I wanted to see how he was doing. Steve listened intently to my stories about Iran but then shared with me the type of bad news so many dialysis patients face after a few years of treatment.

  “My heart, … well, it’s a bitch. I probably couldn’t survive a transplant. I say, ‘Go for it anyway,’ but the doctors patronize. They say, ‘First get a kidney and then we’ll talk about it.’”

  “Have they taken you off the list?”

  “No one says it, but …”

  I was both angry and dejected. I knew something was wrong the moment I walked in. Steve’s demeanor had changed. He seemed to move slower; he avoided eye contact as if he felt guilty about something—as if he had failed by not getting a kidney instead of the system having failed him. I was at a loss for words. My eyes welled up with tears. I ran to the bathroom to splash water on my face and regain my composure. Steve was different when I returned. He seemed to have some of that old drive back, but he had shifted gears: Now his strength was no longer for himself, but for my project. He wanted to help others like himself even if it was too late for him.

  “Go ahead and roll your tape. I want to tell the world what life on dialysis is really like.” He kept speaking while I set up the camera. “This week, I’m kind of optimistic. I’m not going to die this week. But there are a lot of weeks where I’m ready. … To use the word engineers and physicists love to use, ‘entropy.’ I’m fighting entropy.”

  “What do you mean?”

  “The major problem is that dialysis really doesn’t work. It gets rid of only about 10 percent of the toxins in your blood. You’re poisoning your body, and your body cannot take poisoning itself forever. Dialysis is a half-assed fix, you might say. It barely gets you by.”

  Steve exhaled. “Let’s be honest: I wish nephrologists would be more open about what patients are really up against—that this progression I’m experiencing is 95 percent normal—and just make it very clear. … Basically it sucks.”

  Steve saw me adjusting my camera angle and waited, then continued. “I mean, the impact on my quality of life is just fantastically negative. I used to love my work, but now I can’t do more than a few hours a day, if that. I can’t play guitar anymore because my fingers are too stiff. I really can’t go out at night. I can’t ski anymore. I don’t see my friends much. My libido’s gone. There’s really not much of a life at all; between the uremia and the heart disease, I can’t do jack. Dialysis is not just a nuisance—it’s a living death sentence.”

  “So how long have you been on dialysis now?”

  “Almost four years. … And believe me, sometimes I worried I wouldn’t make it to my 54th birthday. I’ve had like eight months where every month I was in the hospital four or five days.  It’s a sense of constant, ongoing exhaustion and planning your life to fit the exhaustion.”

  Steve and I spoke either in person or on the phone almost every week, then almost every day. He was energized, excited about my documentary project, and eager to get as much on tape as he could. I saw how quickly he weakened. Often I would just sit with him and watch TV or talk about inane things. Then when I would get up and say I should go, or that he needed his rest, he would object.

  “Stay, let’s do another taped session. There is so much more I need to say.”

  So I would.


* See notes to Chapter Two at the end of the book for a discussion of how much this is in U.S. dollars and how to determine the purchasing power of 5 million tomans.