"It's like I'm on a leash," said Bob Unruh, 32, a computer programmer who works 60 hours a week to support his wife and three children. Unruh's "leash" is the dialysis machine that keeps him alive. He has been on dialysis since June and is anxiously awaiting a kidney transplant.
"I used to think about being an organ donor, but it was just something I'd do someday--to help someone out," said the soft-spoken man, who lives in Mission Viejo. "But now, due to my circumstances, I know it's much more than that."
Voice slightly shaking, he continued, "With a new kidney, I won't have all the constraints I now have; there won't be the emotional problems with the kids (ages 5, 8 and 10). All of that would almost magically disappear." He would still have to go through tests and take medication, but, he said, compared to dialysis, that would be easy.
Seventy miles away, housed in a bright, airy room at the UCLA Rehabilitation Center, is the headquarters of the operation responsible for obtaining the organ Unruh is so desperately seeking. The Regional Organ Procurement Agency of Southern California is a 24-hour, seven-day-a-week service that procures organs for patients who are awaiting transplants and do not have a living relative able or willing to give them one. Funded by Medicare and established in 1974 by the Southern California Transplant Society, the agency obtains organs from deceased donors, stores them properly and selects the best recipient by matching blood and tissue types.
Said Barbara Schulman, an agency transplant coordinator: "We're kind of in the middle. We represent the (218) local donor hospitals, the donor families, the transplant centers and the recipients."
Would Increase Successes
The agency's goal is to increase the number of organs successfully transplanted. The office and labs at UCLA, headed by immunologist Paul Terasaki, are used by several different kidney, heart, liver and pancreatic transplant centers throughout the agency's area. (Orange County has two kidney transplant centers: one at St. Joseph Hospital in Orange, the other at nearby UCI Medical Center.) Tissue, bone and cornea donations are referred to other agencies.
Since the transplant centers operate independently, when a donor becomes available it is the responsibility of the agency's 10-person staff to coordinate the chain of events that ends with the organ transplant. This process can be particularly complicated when a multiple donor--someone who donates a heart, liver and kidneys--becomes available. For example, the agency would ensure that a waiting heart recipient in Santa Barbara and two waiting kidney recipients in Los Angeles get the organs from a multiple donor in Orange County. This means that all the surgeons must be coordinated, all of the recipients prepped and waiting at their various locations.
Bob Unruh is one of 600 people within the agency's jurisdiction who are waiting for a kidney. In addition, there are about 30 people waiting for hearts and another 30 waiting for livers.
According to Schulman, a former operating room nurse who has been with the agency since its inception, it is crucial for the recipient and donor to be matched as closely as possible in blood and tissue types.
Through the use of sophisticated medical technology and computer programming, the agency tries to match as many variables as possible. "Identical twins will match in all areas; siblings have a good chance of matching in many areas, but the odds against matching with a total stranger are great," said Schulman. In kidney transplants, there is a 98% success rate with an identical twin, 80 to 85% with a brother or sister and 70% with a non-related organ donor, she said. "We can't give (the organ) to the saddest story, but to the recipient who will be the most compatible," Schulman noted.
Typical Sad Story
Unruh's case is one of the typical sad stories. A diabetic since he was 16, he was unaware of any kidney problems until three years ago, when he was hospitalized with high blood sugar. At that time, doctors said he had 50% kidney failure.
A subsequent hospitalization during Thanksgiving of 1984 revealed he had 75% kidney failure. Doctors said he would probably have to go on dialysis before Christmas, 1984.
"I was very lethargic and nauseous. My legs would sometimes cramp up so severely that even getting up to walk was painful," Unruh said. "My lips and tongue would turn numb. All of these were symptoms of the poisons in my system." He was so tired that he would sleep in his van during normal lunch hours just so he could make it through the day.
Even with these debilitating symptoms and the knowledge that his kidneys were barely functioning, Unruh wanted desperately to avoid dialysis. He has a severe fear of needles--which he had even before his diabetes--and said that for the last 16 years, he has even had trouble injecting himself with insulin.
"We looked at the possibility of a kidney transplant immediately," said Unruh's wife, Kim.