By S.J. Fitzgibbons, MD, FACP

It doesn’t take long to get tired of spending 12 hours a week on hemodialysis, or even more time on peritoneal dialysis (PD) —not to mention complications like line infections and access problems. But a new, healthy kidney would put an end to all that. A transplant sounds like it would be well worth the risk of surgery and the trouble of taking anti-rejection medicines, and Medicare statistics show that it actually costs less in the long run than continued dialysis. When can you check into the hospital, you ask?

Unfortunately over 80,000 people in the United States are already waiting for a new kidney and in 2008 only 16,517 got one. Maybe you don’t have a compatible donor in your family, or you’ve been told that you are “not a transplant candidate” for one of several reasons. You’re a resourceful person who knows that persistence pays off, and you start looking for ways to shorten the wait or get around the rules that say you don’t qualify for a transplant.

Kidneys from living donors are almost always preferable to those from recently deceased donors. If you don’t have a friend or family member willing to donate, what about getting one where the laws against buying an organ are less strictly enforced?

Medical tourism is booming these days. Countries like India, China and Pakistan have medical centers of their own with high standards of care. Maybe you know somebody who had surgery overseas, either to avoid a waiting list or just because the price is lower there. The same international pharmaceutical countries produce medicines for everybody these days, so how big a difference can there be?

My nephrologist friends say it’s a common story: a dialysis patient misses treatments or appointments for a few days or several weeks, then comes to their office asking for refills on anti-rejection medicines…with pill bottles labeled in Urdu, Chinese or Farsi as well as in English. Did they get a good deal or what?
Unfortunately this may not be the bargain people hope for. At UCLA Jagbir Gill, MD, and associates studied 33 patients who had received transplants overseas, and found they had much worse results than patients who received transplants in this country. Screening of paid kidney donors was less thorough, with problems like hepatitis overlooked. Early organ rejection was twice as common and infections frequent; Dr. Gill recalls patients who went “directly from the airport to the emergency room” due to severe infections or transplant failure.

In a similar study in Canada, where waiting periods for transplants are even longer, experiences were similar. Jeffrey Zaltzman, MD, reports infections common in the countries where the transplant was done were a big problem in medical tourists. One 78-year-old gentleman returned from Pakistan with a surgical wound that reopened spontaneously; he died a few weeks later of cardiovascular problems that might have disqualified him for a transplant at home.

The cost to paid organ donors can be even greater. Poor people who sell a kidney, sometimes for as little as $800 according to the World Health Organization, face health problems like hypertension and worsening of their own kidney functions—provided, of course, that their surgery goes well. Since most live in countries where even blood pressure checks are rare, complications that develop after they leave the hospital may go undetected until it is too late for the patient.

Donors in the United States frequently can have kidneys removed with very small incisions. Third World donors, however, generally end up with wounds up to 14 inches long that may take months to heal, making them unable to do the manual labor most depend on. Chronic pain and disability are common, points out Nancy Scheper-Hughes, who has extensively studied and reported on transplant practices from Brazil to China. And reports of organs coming from executed prisoners in China are even more worrisome.

Details of where donors come from and which hospitals and doctors will do the surgery are rarely available to “clients” and their families ahead of time. While paying a donor for an organ is illegal everywhere except Iran, “international transplant coordinators” have no laws banning what they do—bringing clients together with hospitals in other countries. And as the WHO’s Dr. Luc Noel points out, “None of the brokers ever mention the costs—long-term health issues, chronic pain, inability to perform manual labor—that are borne by these poor organ vendors.”

Both the United States and Canada stopped using paid donors for blood products decades ago, since people with a financial motive to donate sometimes lied about their risks of infections like hepatitis and HIV. There seems little reason to think that organ donors will be more honest.

But the numbers still tell you that you will live longer and better with a transplant. What else can you do?

For a start, look into newer options for living-donor transplants. Paired-donor transplants allow a family member who is not a tissue match for you to donate a kidney to a stranger, whose family member then gives a kidney to you. Even larger groups are becoming available: last March the University of Toledo Medical Center reported a “donor chain” of 10 kidney transplants involving patients and donors in five states, started by a single man who donated a kidney without a specified recipient “just because he could.” The National Kidney Registry’s Web site (www.kidneyregistry.org) now lists 28 transplant centers that help people without a matching donor to find a living one, and has arranged more than 50 transplants since its beginning in February 2008.

Were you turned down for a transplant? Ask why. You can’t change your age or HIV status, but obesity, uncontrolled diabetes and substance abuse can be treated. Diet and exercise programs like the one advocated by Dean Ornish, MD, can reverse the fatty deposits that block arteries. If “psychosocial factors” are the problem, do some hard thinking about ways to reduce factors in your life that would limit your ability to take care of a transplanted organ.

Try another transplant center. Standards don’t vary that much, but you may qualify for a research protocol if you have problems that are being studied. You may find a nephrologist there who will try harder to control dialysis-related problems like anemia and post-dialysis drops in blood pressure.

Finally, do what you can to increase the number of donors. Become active in organizations that educate the public about organ donation. A survey in fall 2008 by Donate Life America found that only 38 percent of licensed drivers had signed up to be organ donors, and in almost all states permission for donation must be obtained from the donor’s next of kin regardless of his wishes.

Selling organs is and should be illegal—but a system to pay expenses, such as lodging and travel costs for donors, might make donation more attractive. Atlantic contributing editor Virginia Postrel, herself a kidney donor, points out that “Living donation is a low-risk procedure for the donor that offers life-changing rewards for the recipient. Yet the donor is the only person involved in the process who receives no compensation.”

Eighty-thousand people waiting for kidneys may sound like a lot. But a country this size should be able to find donors for them without the need for overseas travel or illegal surgery on poor people and prisoners. Keep trying and take the best possible care of yourself.

Stella Fitzgibbons, MD, FACP, is board-certified in internal medicine and a hospitalist with In-Patient Consultants of Texas. She works regularly with dialysis and organ transplant patients as well as writing articles to help the public learn about medical issues.

This article originally appeared in the November 2009 issue of aakpRENALIFE.

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