Organ Transplant Abroad: One Person's Ordeal

Controversial Bid To Avoid Long Queue In Canada Results In Complications

By Lisa Priest

When Matin Khan arrived at a Toronto hospital emergency ward desperately ill, she appeared to be a medical mystery: a new kidney was filtering her body's waste but there was no medical file on her transplant.

Though the 57-year-old's new organ was working, the rest of her wasn't. Feverish, she weighed 40 pounds less than when she had left her Scarborough home months before.

She couldn't walk or even wiggle her toes.

As doctors at St. Michael's Hospital worked to determine what was wrong with her that March 12, one thing was clear: her journey to Pakistan for a paid kidney transplant had been a hazardous one.

"I've gone through so much pain," said Ms. Khan, her luggage still sitting at the side of her Toronto hospital bed.

As it turned out, she developed an infection that was slowly paralyzing her as it pressed against her spinal cord.

But its origins are unknown.

Ms. Khan had been waiting three years in Canada for a kidney that did not materialize. So she had gone to Lahore, where she was matched with a labourer who she said was paid 125,000 Pakistani rupees for his left kidney, which amounts to about $3,143.

Ms. Khan felt it was her last chance at life.

And because she wanted others to know of other options, she allowed The Globe and Mail to follow her through her two-year struggle, the first time such a transplant journey has been documented in Canada from the beginning.

According to Ms. Khan, donors in Pakistan "are poor people and they need [the] money. . . . They can't make that much money their whole lives."

In that way, she said, every one was left better off.

Buying organs is illegal in Canada and many other countries, but it doesn't deter an estimated 30 to 50 Canadians each year from seeking them out in India, the Philippines, China and elsewhere. In Pakistan, payments for live organs, though controversial, are not illegal.

The British Columbia Transplant Society has lobbied the federal government, without success, to alter the Criminal Code, making it an offence for those to return from foreign countries with bought organs.

While many judge transplant tourists harshly, the dilemma for individuals who face a life on dialysis -- or possibly no life at all -- is a sobering one that the vast majority of Canadians never have to confront.

"If a country has failed that person in providing them with care that they need, then what is the choice that that person faces?" asked Abdallah Daar, director of the program in applied ethics and biotechnology at the University of Toronto's Joint Centre for Bioethics.

"My point has always been that if you can't stop it, then you should consider regulating it because you are getting as many transplants being done on the black market for which you have no control and you sit on your high moral horse and say this is wrong and do nothing about it," said Dr. Daar, professor of public-health sciences and surgery at the University of Toronto.

"In Canada, I was on a waiting list and they never told me anything except that seven years later, you may not be able to get your kidney," said Ms. Khan, who ekes out a meagre existence on disability payments.

During that time, her health declined despite her thrice-weekly dialysis treatments and she endured an anxious wait for the organ that never arrived.

Darwin Kealey, president of the Trillium Gift of Life Network, said 29 patients who received organs from a deceased person at St. Michael's Hospital in 2002 waited an average of 1,780 days, or roughly 4.8 years.

However, those figures merely represent an average: some patients have waited as long as seven years in Toronto for an organ match, said Jeffrey Zaltzman, director of the renal-transplant program at St. Michael's.

And then there is another group: those who never make it to the top of the list: about 237 people died across Canada in 2002 awaiting an organ, including 89 who were seeking a kidney, according to the Canadian Institute for Health Information. As of Dec. 31, 2002, there were 3,956 patients waiting for all types of organs in Canada.

"If we had more organs and were able to transplant people in a more timely fashion, less people would die," Vivian McAllister, chairman of the Canadian Organ Replacement Register's board, said in a telephone interview from London, Ont.

For Ms. Khan, travelling to her native Pakistan, a country wedged between Afghanistan and India, was a risk worth taking. She set off from her home in November to Lahore, arriving in a parched, dusty land.

Citizens were burning U.S. flags in the streets and holding frequent anti-American demonstrations as the threat of war with Iraq loomed. Fortunately for Ms. Khan, she blended very much into the crowd, even though she has lived in Canada for three decades.

She arrived in a family that had spent many months scraping money together to pay for her operation: they sold property, took out a bank loan and drew from their savings account.

"I'm pushing my family to do this for me but it's not right because they have their families too," said Ms. Khan, who is divorced and has no family in Canada.

It was the second such act of generosity: her family paid for an earlier transplant in Rawalpindi, Pakistan, in March, 1998, but her body rejected it in the summer of 2000.

"My mother wanted this; [Ms. Kahn] was having a really bad time; she wasn't comfortable at all with dialysis," brother Ishfaq Khalid Khan said in a telephone interview from Lahore. "We talked to the doctor and everything meshed. But it's really costly."

The hospital they sought was the Masood Hospital, a 50-bed private facility that has been operating since 1992.

On its Web site, a transplant package is offered for $14,000 (U.S.). For that price, a patient receives 21 days lodging, three meals a day, three dialysis sessions before the operation, donor expenses, the surgery and two days of medicine after discharge.

The donor is also provided with services to recover from the operation. In cases where the recipient's stay is delayed, patients are charged $70 per day for board and lodging.

Ms. Khan's brother Ishfaq was able to do better than that price, possibly because he did not go for the package deal and also because his sister spent only eight to 10 days in hospital. He said the cost for the operation was some 500,000 rupees, including the cost to the donor. That amounts to roughly $12,572 (Canadian).

Dr. Vivekanand Jha, associate professor of nephrology at the Postgraduate Medical Institute in Chandigarh, India, said there is no law against paying organ donors in Pakistan, and there are no physician guidelines.

"However, I have met the leading transplant professionals of that country, and they have clearly expressed their disapproval of the activity," he wrote in an e-mail. "But nobody can be prosecuted since there is no law against this."

About 70 per cent of Masood Hospital's patients are from overseas, said Hasan Masood Khan, consultant anesthetist and executive director of hospital operations.

Transplant surgeon Mohammed Zaki, who performed the surgery on Ms. Khan, said patients come from the Middle East, the United States, England, the Netherlands and Sweden. As well, Pakistanis such as Ms. Khan who live elsewhere travel for the operation.

As for the donors, Dr. Zaki said they come from all classes.

The Masood Hospital's Dr. Khan said the private hospital doesn't go out looking for donors; they either contact the hospital or are already in contact with the patient.

"We at Masood Hospital always endeavour to provide as much to the donor as is possible since he has given away a kidney to provide life to another person," he wrote in an e-mail. "There are instances on record where the overseas recipients have even provided the donors with employment overseas or even resident status."

Though the family was pressed for money, Ms. Khan's brother said he and his two brothers paid extra to the donor because they felt indebted to him and he also had expenses to pay. Mr. Khan also provided the donor with his address and telephone number, telling him to call if there is anything he needs.

"I said whenever you need me, whenever you want anything, there should be no hesitation, you must contact me," he said. "And he said he would."

The Khan family said they paid the donor 125,000 Pakistani rupees, $3,143. But Dr. Khan of the Masood Hospital said there is a strict policy that donors be paid the equivalent of 200,000 Pakistan rupees, which amounts to $5,029.

However, Dr. Khan noted that the hospital does "not take responsibility for donors with whom the patient or her/his representative[s] has entered into direct negotiations and the donor is informed of this policy prior to surgery."

Whatever the case, when Ms. Khan underwent her operation Jan. 17, she was very ill. Her lungs were retaining water and despite frequent dialysis, her condition was not improving.

"In fact, she was a high-risk case for my anesthesia colleagues. Without a transplant, her prognosis would not have been very encouraging," Dr. Zaki wrote.

Despite the risks, the operation went well without complications, according to Dr. Zaki.

"However, I cannot predict on how long the kidney will last since there are a number of factors that affect it," he wrote. "I am still seeing patients I performed a transplant on 11 years ago. I also have patients who rejected their kidneys in one year, but they admitted that they stopped taking the immunosuppressive medication due to financial constraints."

After her transplant, in a telephone interview Ms. Khan sounded relieved; her breathing no longer sounded laboured and her voice was strong. But she continued to complain about a pain in her hip and her lower back that worsened.

She left the hospital after eight days, planning to recuperate at her brothers' homes for two weeks before flying back to Toronto but her declining health made that impossible.

By Feb. 23, Ms. Khan had severe pain in her back. Another brother who knows a kidney specialist went to his house, asking for advice, and the recommendation was that she go to hospital for tests.

She went back to the Masood Hospital but she said an outstanding bill for about $100,000 Pakistan rupees prevented her from being treated. While Dr. Zaki agreed to treat her, she said administrators refused to admit her to the hospital until she paid the balance of her bill.

"They said: "Don't come to the hospital if you don't have the funds to pay,' " Ms. Khan said. "We said we would pay in the next couple of months because we didn't have all of the money."

In an e-mail, Dr. Khan, the Masood hospital's executive director of operations, said he will "never tolerate her [Ms. Khan] at this hospital again."

Dr. Khan said there is a large, outstanding balance for the operation and subsequent care and the "amount she is claiming she paid is a joke."

"We have written off the amount in the name of service to a poor patient."

With her back racked by pain, Ms. Khan went to another hospital in Pakistan, where she underwent a series of tests. The diagnosis was grim: a severe infection in the lower region of her back necessitated an extensive operation, followed by six to nine months of recovery.

"It would have cost more than the transplant," Ms. Khan said. "I said, "No, I'm going, goodbye.'"

All told, the dialysis before the operation, the surgery and the care for the infection amounted to a bill of about a million rupees, roughly $25,142.

With the help of a specially made belt that wrapped around her lower back, Ms. Khan flew home to Toronto. When she arrived at Pearson International Airport on March 12, an ambulance was there to pick her up and take her to St. Michael's Hospital.

Neurosurgeon Paul Muller was on duty that day and remembers seeing her in incredible pain. He described her infection as being a very, very extensive problem.

"We were quite literally poised to proceed surgically and do a decompression," said Dr. Muller, a professor of surgery at University of Toronto. "We elected to try and treat this in a more conservative fashion; the rationale being that if she did have an operation, it would have to be an awfully big one and she would potentially suffer very significant complications."

Ms. Khan had osteomyelitis, an acute bacterial infection of the bone. She was strongly suspected of also having a tuberculosis infection, though the latter diagnosis is not firm.

Though the cause of her infection is unknown, Dr. Muller said she was more likely to contract TB in Pakistan than in North America. The suspected TB infection was one she had for many weeks or months as opposed to days.

Ms. Khan thinks she may have had the infection before she left Canada, though she is not sure how she developed it.

Whatever the case, had it not been treated "it would have resulted in total and permanent paralysis and it would have taken, over the course of time, her life," Dr. Muller said.

Luckily, her body responded to the medication.

"The prognosis for neurological recovery is very good; her prognosis for control of her infection is also very good," Dr. Muller said. "The possibility of her having a chronic pain problem, at least that prognosis is guarded."

Today, she is at a Toronto rehabilitation hospital, working on strengthening her leg and back muscles. Ms. Khan's transplant nephrologist, Dr. Zaltzman, said though her kidney was still working when she arrived, she was no longer taking two out of three antirejection drugs.

"I think she was lucky, but is it a success?" Dr. Zaltzman asked. "I guess at the end of the day it was successful but there was a lot of angst, a lot of difficulty."

Though going overseas for a transplant is not something he condones or would ever facilitate for a patient, he said: "If I had to wait eight years or my kid had to wait eight years, I certainly might consider other options."

Copyright © 2003 Bell Globemedia Interactive Inc.

This article posted May 14, 2003.