Anguish follows transplant triumph Pancreas rejection left patient worse

THE BALTIMORE SUN

Raymond Rye made history when he walked out of University of Maryland Medical Center March 6 with a new pancreas and a heart full of dreams.

Hospital staff applauded the success of the transplant, television cameras recorded every step of his exit and well-wishers heralded his homecoming as another miracle of science.

But the next evening, Mr. Rye, a diabetic for more than 30 years, returned to the hospital -- with minor complications -- and has remained there since.

Today the Harford County man lies partially paralyzed from a severe stroke. His body eventually rejected the pancreas, and doctors removed it April 21.

"I am devastated. We had wonderful dreams and plans, and they got swept out from under us," said his wife, Julie, who lives in Churchville with her husband and their two children, son Kris, 12, and daughter Kelly, 10.

Mr. Rye, 34, became the first patient in Maryland to undergo a transplant of a pancreas without also receiving a new kidney. A successful "pancreas-alone" transplant, as surgeons call the relatively new procedure, is far more difficult than a pancreas-kidney transplant because a kidney shows signs of rejection earlier. Consequently, the patient can be treated for rejection sooner.

"Raymond's pancreas functioned really well for about 30 days," said Dr. Stephen T. Bartlett, who performed the five-hour operation Feb. 18. "But then he had a vicious rejection. And even though we caught it pretty quickly, he ultimately rejected the organ."

Before the operation, Mr. Rye had struggled with many problems typical of diabetics -- deteriorating vision, muscle weakness, poor balance, numbness, high blood pressure and gastroparesis, a deadening of the nerves that affect digestion. He also had had a stroke, a heart attack and several bouts of pneumonia. His kidneys, though, were only slightly damaged.

He went on disability leave from his job as a warehouseman withAberdeen Proving Ground after a back injury five years ago that aggravated his illness.

The pancreas' role in the body is to produce insulin, which is necessary to regulate sugar levels in the blood and urine. The new pancreas meant Mr. Rye no longer had to inject himself with insulin daily and, more important, it promised a halt to the nerve damage that had begun to affect major organs. It also was expected to make a kidney transplant unnecessary. Mr. Rye's "native" pancreas remained in his body, still attached to his digestive system. The new pancreas would be used only to produce insulin.

'Miracle to madness'

"We were completely overjoyed when the pancreas was put in," said Mrs. Rye. "But it went from miracle to madness." For a while after his readmission, she said, her husband would take "three steps backward and one step forward."

Dr. Bartlett doesn't know why Mr. Rye's body rejected the pancreas, but he said the patient's slide was complicated by a severe stroke he had four days after re-entering the hospital that left the right side of his body paralyzed. "The stroke was probably precipitated by the events around the transplant, but I can't say why," the surgeon said.

Along with the stroke, Mr. Rye has experienced intermittent pulmonary problems and a throat infection and underwent a tracheotomy. In the past two months, he has spent 3 1/2 weeks on a respirator and seven weeks in intensive care.

Doctors tried OKT 3, a powerful anti-rejection drug that Mr. Rye ++ tolerated well. "But you can't give it for long," said Dr. Bartlett, "and in his case when it was withdrawn, the rejection came back." Finally, doctors decided they had no choice but to remove the donor pancreas.

"I was relieved and disappointed at the same time," Mrs. Rye says of the decision. Now her husband's sickness would ease, but the removal of the organ was the final admission it had failed.

A couple of days later, she returned to the transplant office with the costly immuno-suppressant drugs purchased after the transplant. The drugs were to have been part of her husband's daily routine for the rest of his life.

"That was the worst time," she says of the day she offered the drugs to another transplant patient who still might use them. "That's when I knew it was over, that that chance was gone."

On top of the disappointment of the failed transplant and her husband's worsening condition, the last two months have presented overwhelming practical problems, says Mrs. Rye, who has been at her husband's side daily since he was readmitted. "My family has come to a complete halt," she says. "It's temporary, and I realize that now, but I don't like being a single parent. It's financially a burden and emotionally it's overwhelming."

She took a leave of absence from her job as a secretary for a podiatrist before the transplant. But after her husband's stroke and deteriorating condition, she was forced to quit because she couldn't guarantee her employer when she would return.

Mrs. Rye's brother and sister-in-law from Nevada, who had planned to move to Baltimore, accelerated their plans and moved in with the Ryes recently to help care for the children.

Kris and Kelly had sent letters to Dr. Bartlett before their father's homecoming, thanking the surgeon for the transplant and picturing Mr. Rye playing baseball with them. Today, they visit their father on weekends and don't talk much about the future. "They just want their daddy home now," says Mrs. Rye.

Mr. Rye's condition has stabilized somewhat since the pancreas was removed, and he has been in intermediate care, a step down from ICU, more than a week. The tube in his throat has been replaced with smaller ones twice, and he has been able to slightly move his right arm.

But he's still a long way from where he was the day doctors phoned him to say a healthy pancreas was available from a 13-year-old Florida boy who had died from a BB gun wound.

'A long road'

"He's getting better now, but it's going to be a long road," Dr. Bartlett admitted.

"The problem is diabetes had done an awful lot of damage to Ray before we got started. He was at high risk, but the risk-benefit ratio clearly favored doing [the transplant]. He needed this, and he needed it to work."

Most pancreas-kidney transplants at UM Medical Center have succeeded. Since July 1991 the medical center team has done 35 simultaneous pancreas-kidney transplants and seven pancreas-after-kidney transplants, which means the patient received a new pancreas several weeks or months after a new kidney and from a different donor.

Of the 35 combination operations, Dr. Bartlett says, "34 kidneys are still working, and 30 pancreases are still working." One patient died a year after the transplant.

Of the seven pancreas-after-kidney operations, five pancreases are still functioning.

"That still is above the national average," said Dr. Bartlett, director of transplant surgery at the medical center.

"If nothing else, I want the doctors to learn from all of this," said Mrs. Rye. "I want them to get everything they can out of this and make it last longer than one month for the next person."

Meanwhile, she lives with hope fed by small victories: Her husband recently began working with a physical therapist -- "he rolled over for the first time [Tuesday]," she said -- and he is beginning to feel movement in his right arm. Nurses bought an Easter card for the family and helped him sign it with his left hand. And Mrs. Rye has full faith that he will walk again.

"I refuse to give up hope," she says. "He's too young, and we have two children, and we still have too much to do together."

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