The gift of life

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DESTINY: Surgeries and the kindness of strangers helped to extend the health of a young Vietnamese patient, Vicky Nguyen. Recently, she helped to decorate the Donate Life America float for the Jan. 1 Rose Parade in Pasadena, Calif.

About 90 people of Vietnamese descent are on waiting lists for a kidney in the Orange County and Los Angeles regions, hoping that a donor’s kidney will become available for transplant to restore them to health.

Yet the likelihood of that actually happening is not encouraging for many patients because of a shortage of organs.

Only seven Vietnamese in the region got a kidney transplant in 2009, as well as seven others from January through September of 2010, according to figures from the national Organ Procurement and Transplantation Network (OPTN).

For people of all ethnicities, there were 810 kidney transplants in 2009 from deceased donors and 645 for the first nine months of 2010. These figures represent just a fraction of the more than 6,000 patients on the region’s kidney wait list.

The situation is not unique to Vietnamese or to Southern California. Kidneys are the organs in greatest need for transplant throughout the United States. Of 110,000 people on current organ wait lists nationwide, nearly 88,000 need a kidney. In contrast, during 2009 — the last full year for which statistics are available — 10,400 kidney transplants were performed.

There is “a tremendous gap” between the number of people needing transplants and the supply of human organs, especially kidneys, said Dr. Robert Mendez, professor of surgery at the USC Keck School of Medicine. Mendez is also president of OneLegacy, a nonprofit agency that promotes organ and tissue donation in Orange, Los Angeles and five surrounding counties.

The gap has resulted from several factors. The number of organ donations has leveled off in recent years while the number of people needing transplants, especially for kidneys, has grown.

These realities have prompted some Vietnamese to consider having a relative or friend become a “living donor” because a healthy person can survive with only one kidney. Other Vietnamese in renal failure have gone to China for kidney transplants with uneven results. Others have died while they were on the waiting list.

To Vanessa Hong-Van Nguyen, a Saigon TV news anchor, these figures demonstrate the need for greater awareness among Vietnamese about the importance of organ donation. Getting more people to become organ donors will save lives, she said, and allow surviving loved ones to feel a sense of consolation.

A donor whose organs are recovered at time of death can potentially help eight people if the kidneys, lungs, liver, heart, pancreas and small intestine are all made available for transplant.

Dr. Sean Cao, a kidney and pancreas surgeon, said he’d like to see more Vietnamese become organ donors. “Vietnamese are being disproportionately favored,” said Dr. Cao, a former transplant surgeon. “This means Vietnamese are getting more transplant organs than they are putting in to the pool as a community.”

Nineteen Vietnamese received transplants in 2009 and another 18 in the first nine months of 2010.

In 2005 and in 2006, there were five Vietnamese deceased donors each year, according to OPTN. Since then, the number of Vietnamese donors has fluctuated. There were four Vietnamese donors in 2009 and two in 2010. Because more than one organ can be recovered from each donor, the number of people helped via transplants from Vietnamese donors was not available.

For a person to be considered for organ donor, the individual must be declared brain dead by two doctors but his or her organs must still be functioning with assistance from medical equipment. Those conditions turn out to be extremely rare. According to OneLegacy, fewer than 1 percent of all deaths meet that condition.

The family of one donor, journalist Nguyen Huy Vu, has become a donation advocate in the Vietnamese community. He suffered a heart attack while playing soccer in 2009. His father, Chuyen Van Nguyen, has said: “While we are still mourning our devastating loss, we are honored that Vu’s generosity has benefited other human beings.”

In separate interviews, Dr. Cao and Dr. Christopher Duong Bui urged Vietnamese to sign up for the state organ and tissue donor registry. In that way, at the time of death, enrolled individuals will be eligible to be considered for organ and tissue donation.

Dr. Bui and Vanessa Nguyen have discussed organ donation on the radio and television programs he hosts. “Vietnamese are now better informed about organ donation,” he said, “but some still remain reluctant” because of a lack of accurate awareness.

Vanessa Nguyen agreed with Dr. Bui that many Vietnamese still harbor misconceptions. One common belief, held by some Vietnamese Catholics and Buddhists alike, is that, after death, the body should be left intact.

Vanessa Nguyen would point out to Catholics that both Pope John Paul II and Pope Benedict XVI have supported organ donation.

Shereceived the endorsement for donation of two Buddhist leaders: Venerable Thich Nguyen Tri, of Bat Nha Temple in Santa Ana, and Venerable Thich Chon Thanh, of Lien-Hoa Temple in Garden Grove. “They consider donation to be a matter of personal choice,” she said, “but they said Buddhism does not oppose it and that saving lives is a good thing.”

Vanessa Nguyen worked for OneLegacy as a community educator for 10 years. In an unanticipated action, she and 20 other employees of OneLegacy were laid off Jan. 10 because of a decrease in the organization’s revenues.

“The layoffs were a difficult decision,” said OneLegacy spokeswoman Elena de la Cruz. “Vanessa was a valuable part of our organization.”

Vanessa Nguyen said she was shocked about being laid off but understood OneLegacy’s need to balance its budget. She said she was “saddened about the elimination of her position working with the Vietnamese community.” Yet, she added, she felt satisfaction in her work, knowing that donors’ organs had enabled transplant recipients to regain health and enjoy family life.

When she started her work in 2000, she said, “there was little knowledge about organ donation to save lives in the Vietnamese community.”

At present, most organ donations take place when family members give consent after a loved one is brain dead, a situation often occurring after an accident or an aneurysm. She also served as a family care specialist, meeting with Vietnamese families.

But instead of having a loved one make a decision, at a time of grieving, organ donation advocates encourage individuals to make that choice themselves in advance, by enrolling for the state registry through the DMV or online at www.DonateLifeCalifornia.org

The state registry, established four years ago, lists 7.7 million participants — or one in four licensed drivers and identification card holders in California. In a recent OneLegacy study, the enrollment rates on the registry varied widely by ethnicity: 37 percent among whites, 14.8 percent among Latinos, 13.5 percent among Asians and 12.9 percent among African Americans. No specific figure was available for Vietnamese.

Health experts say the growing numbers on the kidney waiting lists are being spurred by increasing rates for diabetes and high blood pressure — two conditions that can lead to kidney failure and the need for a transplant.

In the U.S., Dr. Cao said, 60 percent of the population is overweight and one-third is obese, a factor that can lead to Type 2 diabetes. Unfortunately, he said, many Vietnamese Americans are starting to go along that same unhealthy path.

Most elderly Vietnamese stay lean by eating traditional foods. But members of the younger generations, Dr. Cao said, are adding pounds by consuming too much pizza, processed foods, colas and fast foods while not staying physically active.