Father Waits in Hope of New Kidney : Mission Viejo Man Hangs On to Life Through Dialysis

“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.

At first Unruh was told that diabetics were not good candidates for transplants because they have a slow healing process, which is complicated by the drugs given during transplantation to suppress the immune system. But Unruh and his wife did not accept that first opinion and researched further.

They finally discovered several doctors who assured them that transplants were being performed on diabetics and soon discovered Dr. Donald Martin, who performed one of the first kidney transplants in 1963 at UCLA.

Brother Volunteered

Unruh made it through Christmas of 1984, but another hospital bout in March brought him to St. Joseph, where preliminary work for dialysis was begun. With Unruh’s condition so obviously serious, his 29-year-old brother--without being asked--contacted Marya Weil, the transplant coordinator at St. Joseph Hospital, to offer his kidney. However, medical complications soon made it obvious that the live donor transplant would not be possible.

In June, 1985, Unruh was hospitalized with severe chest pains from fluid collecting around his heart. Dialysis had to be started immediately. During the first day of dialysis, Unruh, already thin, had 12 pounds of excess water removed from his body.

Dialysis treatments are typically needed three days a week, for three to four hours each treatment. Two needles with tubes are attached in the arm. One tube takes the blood out of the body and circulates it through the dialysis machinery, which cleanses it of poisons and excess fluid, while the other tube brings the cleansed blood out of the machine back to the body.

As difficult as dialysis is for most patients, Unruh’s phobia made it a particularly traumatic experience for him. “It was sheer terror for me at first,” he said. “I would break out into a sweat and become terribly upset.” Later, when there was trouble with his veins, and technicians had to try four or five times to hook him up, he lost control. “I would go to pieces. I would start to shake and shiver. It’s like having claustrophobia and being stuck in a dark closet.”

Recalling her own feelings of helplessness, his wife said: “Probably one of the hardest things is to watch him go through it. I can deal with that sort of thing, and I would have given anything for it to have been me. I almost feel desperate at times to do something for him.”

According to Barbara Schulman, patients often feel nausea and tired during and after dialysis. Diet is also severely restricted. Obviously, patients can’t go on extended vacations without complicated medical arrangements, and they must be able to have blocks of time available during the week for the medical procedure. This can severely limit work opportunities.

Unruh, who has a full-time job as a computer analyst and moonlights as a computer programming consultant, said his own opportunities within his company have been severely restricted. However, with company-sponsored medical insurance picking up his $250-a-month medication bills and his average $3,500-a-month dialysis charges, Unruh feels his options are limited. “Even if I were to become dissatisfied with my job and look for another, I probably couldn’t find one that would give me two afternoons off a week. And most likely the insurance company wouldn’t pick me up.”

Tests for Compatibility

When Unruh went on dialysis, he also was given a few tests that will be used in compatibility studies every time there is a kidney donor. He linked up with the procurement agency through Marya Weil, the transplant coordinator at St. Joseph Hospital who had helped in the medical work-up with his brother. Kim Unruh said: “Marya has become our lifeline link. She’s become our biggest source of support.”

Weil monitors Unruh’s dialysis treatment and is the one, along with Dr. Martin, who will tell Unruh when a kidney becomes available. Responsible for overseeing all elements of transplantation, Weil and her counterpart at UCI Medical Center act as communicators between patient and doctor before, during and after the transplant occurs.

When a compatible kidney is available, a coordinator such as Barbara Schulman will call either Martin or Weil. Then, said Weil, “a lot of things happen at once. We will notify the patient and make sure he is healthy.” Sometimes there will be some further tests and then the patient is prepped for surgery.

Weil, who was involved in 25 transplants in 1985 alone, said the family usually is very nervous and needs a lot of support. “They’ve been waiting a long time, and now it has happened. When I call them, they can’t believe it.”

Weil said: “This is the best part of my job. At that moment, you’re full of hope.

“Dialysis replaces only part of the kidney’s normal function. A new kidney is really the only way of restoring these patients to health. They don’t go to total health, but you’re really offering them a new life. These people are able to go back to work and live normal lives.”

While a new kidney is the best possibility for many patients on dialysis, Schulman said: “The rejection factor always exists. It’s a phenomenon we don’t fully understand. We’re still studying it.”

In the first year, there is a 30% chance of rejection, but that percentage goes up every year, Schulman said. Although she is optimistic that each new advance heightens the recipients’ chances, she said: “Waiting for the other shoe to drop is something in the back of everyone’s mind. Transplant is not a cure.”

However, the possibility of a transplant continues to give Unruh hope.

He said his experience has made the people in his life more aware of what donating an organ means. “When you really get involved in it, you see that it’s not just helping someone out--it’s something you can’t put into words. It’s giving them a new lease on life.”

Said 10-year-old Chad Unruh: “When I die, you make sure everybody has my parts--anything and everything they want.”