Transplant network makes life-or-death decisions 400 sick Marylanders wait for donor organs

May 10, 1992|By Frank D. Roylance | Frank D. Roylance,Staff Writer

An 18-year-old Baltimore youth has been waiting for a kidney for eight months. A 75-year-old Catonsville man who is still employed has been waiting three months for a kidney.

In Cumberland, a 43-year-old nurse, disabled two years ago by diabetes, has been waiting for a kidney and pancreas for 4 1/2 months.

A 45-year-old Arnold man has been in intensive care at University of Maryland Medical Center for two months waiting for a new heart. Only intravenous drugs keep his diseased heart pumping.

These are just a few of more than 400 desperately ill Marylanders waiting for organ transplants.

Last year, 62 Maryland families agreed to donate organs of deceased family members. Those donations yielded hearts, lungs, kidneys and other organs for 192 patients in Maryland and elsewhere, but still too few to help all who need them.

With 26,000 people waiting for organ transplants nationwide, only 4,530 people donated organs in 1991, according to Mark Reiner, executive director of the Transplant Resource Center of Maryland, one of 67 regional transplant coordination centers in the United States.

Most of those waiting for kidneys eventually get one, but "about 50 percent" of the non-kidney transplant candidates "die waiting," said Dr. Stephen Bartlett, director of transplant surgery at the UM Medical Center.

Managing scarce organs so that they go to the most desperate patients is the task of the United Network for Organ Sharing (UNOS). Based in Richmond, Va., UNOS is a complex national network of hospitals, transplant coordinators, evaluation teams and computers.

Here's how it works:

Patients with failing organs are first referred by their own physicians to a hospital qualified to do the transplant surgery.

In Maryland, Johns Hopkins Hospital does kidney, liver, combined heart-lung, heart and single-lung transplants. UM Medical Center performs kidney, combined kidney-pancreas, heart and single-lung transplants. Francis Scott Key Medical Center does kidney transplants.

Sharon Augustine, Hopkins' transplant coordinator, said patients who pass an initial screening, performed by her and a nurse practitioner, are then admitted for five to seven days of evaluation by surgeons and a social worker.

They decide which patients get a coveted spot on the UNOS list, making them eligible for donated organs as they become available.

"There is a very limited supply of donor organs, so most centers feel an obligation to use these [organs] where there is the most likelihood of long-term survival," Ms. Augustine said.

The most desperately ill "end-stage" patients, of course, have the best chance to get on the list. At Hopkins they typically have 12 to 18 months left to live when they're accepted. Other patients may be turned away but can be reconsidered if their conditions worsen.

Age, behavior and family issues are also factors.

For example, Ms. Augustine said, transplant candidates generally should be no older than 60, although their physical condition, the organ they need and other factors may allow exceptions.

Older patients generally are considered more likely to have cardio-vascular disease that might lead to heart attacks or strokes after surgery. "If we could go to a shelf [for a donor organ], we wouldn't have an age limit," Ms. Augustine said.

Doctors say age is less of a concern in kidney transplants.

Transplant candidates also must show they can stick with a strict medical regimen. The drugs that organ recipients must take "have a lot of side effects, and patients don't like to take them," Ms. Augustine said. Also crucial is "a very strong family" support system.

Once a patient is accepted, the transplant hospital provides data to the Transplant Resource Center. A computer records the required organ and size, blood type (tissue typing is critical only with kidney transplants), and how sick the person is, Mr. Reiner said.

The computer also keeps track of how long candidates have been on the list and how far they live from their transplant hospitals. Some patients will move to be closer. The longer it takes to get the organ, or the recipient, to the operating room, the less the chance of success. The distance factor may determine who gets the organ, Mr. Reiner said.

"The heart can only be kept out of the body for four hours. The same with the lungs, four to six hours. With livers, a pancreas or kidneys, there is no limit, distance-wise," he said.

Transplant candidates are contacted and examined regularly for any changes in their situations. Deteriorating health might make a transplant more urgent, or a bad risk. A domestic crisis and the loss of family support also might cost a candidate his or her spot on the list.

The wait for an organ lasts until doctors somewhere identify a potential donor, usually a victim of terminal brain injury that has spared the other organs.

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