Brothers find happy ending with kidney donation program
Little boys often emulate their older brothers.
When Tom Terebus was young, he certainly looked up to his brother, Steve, three years his senior. Both played football at Westmont High School in suburban Johnstown and then went on to play at Drexel University.
Sure, they fought like all brothers do, said Tom, now 64, of Indiana. There were times Steve picked on him and there were times when he returned the favor.
[PHOTO: Tom Terebus, left, and brother Steve were part of a kidney exchange program that pairs transplant candidates with willing but incompatible donors with others in the same circumstance. Tom’s donation through the program provided another for Steve. (Teri Enciso/Gazette photo)]
“Sometimes the little ones are the agitators and I was pretty good at that,” he joked as he and Steve, of Johnstown, reminisced in the comfortable living room of his home off Route 422 West.
“We were very close,” Tom said about their growing-up years. “He looked after me. He was my hero.”
In recent years however, the tables have been turned and Tom has been able to play hero to Steve. Because of high blood pressure and diabetes, Steve had a failing kidney. When doctors suggested the possibility of a kidney transplant, Tom wanted to help out. But medical tests revealed his blood type was incompatible with Steve’s and that ruled him out as Steve’s donor.
Doctors revealed another way Tom, a retired engineer from the Homer City power plant, could help out — through a paired exchange program that works through the National Kidney Registry. The program unites a transplant candidate who has a willing but incompatible donor with other candidates in the same circumstances. Chains can be made from two or more of these pairs so that each recipient can ultimately find a compatible donor.
Working with doctors at Allegheny General Hospital in Pittsburgh, Tom and Steve became part of the kidney exchange. Last June, in separate operations at AGH, Steve received his new kidney while Tom donated one of his kidneys to a man from Ohio.
“It’s a miracle,” Steve said. No longer facing the daily grind of home dialysis, he has been out and about this winter, enjoying life as he hadn’t for several years. “All because of him,” Steve said, nodding at his brother sitting next to him on the sofa.
“Steve never asked me to be a donor,” Tom said, emphasizing the decision to give a kidney was entirely his.
“But, boy, am I glad he decided to,” Steve said.
Serious medical problems began in 2011 for Steve Terebus, a retired driver who worked with the McIlwain Bus Lines in Johnstown. He spent eight days at Conemaugh Hospital when doctors discovered blood in his colon, a problem stemming from his diabetes and high blood pressure. During his hospital stay, he lost about eight units of blood and his kidney shut down.
“They put me on dialysis right away,” Steve said.
For six months, he went to a clinic for the treatment but then he and his wife, Lucille, decided to switch to peritoneal dialysis.
“We decided to go to peritoneal dialysis which you can do at home,” Steve said. It was an eight-hour routine each day. “But it was better than three times a week at the office.”
Yet Steve and Lucille knew dialysis would not solve all his medical problems. “It was a way to keep alive,” Tom said. And so in the meantime, his doctors suggested that Steve might be a good candidate for a kidney transplant.
“He had to go through a series of tests to ensure that,” Tom said. Doctors ordered a battery of blood, heart and lung tests and examined him for prostate cancer. Transplant candidates as well as donors also undergo psychological testing before surgery is set.
The testing showed the doctors were right. Steve had the overall health and strength to undergo a transplant operation. The next step was finding a donor — a feat that is easier said than done.
Patients hoping to receive a kidney from a deceased donor wait on average four years, said Janice Glidewell, transplant manager at AGH. The wait is stressful for patients needing relief. The problem can be more acute in western Pennsylvania, where the need for transplants is relatively high.
“We have an elderly population and that has contributed some” to the problem, Glidewell said.
Once Steve was cleared for a transplant, Tom knew his turn to step up had arrived. “That’s when I seriously considered becoming a donor,” he said.
His consideration involved a lot of soul-searching because at the time he faced his own health problems and had to undergo back surgery in June 2012. One month earlier, the sister of his wife, Janie, died of cancer. In spite of all this, the need to help his brother gnawed at Tom. The brothers’ father had died of renal failure in 1994 because dialysis did not work for him
“It just added to the urgency of the situation,” Tom said. “It was tough … to muddle through this.”
But by August 2012, Tom committed to becoming a donor for Steve.
To ensure he was a suitable donor, he had to go through the same battery of tests that Steve had. The family discovered early in the process that Tom could not be a donor for Steve because of an incompatible blood type.
After tests showed he was not a good match for Steve, he talked with doctors at AGH about the hospital’s participation in a kidney exchange program involving living donors. The program links a transplant candidate and an incompatible but willing living donor with other pairs of transplant candidates and incompatible but willing donors.
Medical data from members of each pair is fed into a national databank — the National Kidney Registry (NKR), a nonprofit organization based in New York. From this information, members of each pair can be linked together so that, in the end, each kidney transplant candidate has a compatible donor.
Multiple pairs can be linked together so suitable matches can be made for all transplant candidates in the chain.
“NKR will run the program to find a match (of candidates and donors),” Glidewell said. “The average (wait) time in NKR is about four months.”
The brothers qualified for the matching program, and last spring they learned NKR had set their chain. They were to be one pair in a chain of three pairs. Steve was set to receive his kidney from a donor in New York while Tom was tapped to be the donor for a man from Ohio. Because of national privacy laws under the Health Insurance Portability and Accountability Act (HIPPA), they don’t know anything about the other two members of their chain.
Their chain was relatively small but this is not always the case. In 2010, AGH performed transplants on three area patients — a donor and two recipients — that were part of a 12-pair exchange that ensured all 12 transplant candidates received a kidney from a living donor.
Surgery for the brothers as well as the recipient of Tom’s kidney was slated for June 25 at AGH. Days before the surgery, Tom still faced some of his own health and personal problems — including a dental emergency and the knowledge that Janie’s father, Virgil Faust, was very ill.
“Her dad’s health was failing rapidly,” Tom said. “He had been told he had only weeks to live.” Faust, who died about two weeks after the surgery, always supported Tom’s decision to donate his kidney for Steve.
Days before the surgery, Tom got more distressing news when staff at AGH called and questioned the results of one of his blood tests. It was unnerving — “We were getting down to the wire,” he remembered. “At this point, I said we just have to get this done.” But another round of tests showed that all was fine.
Tom’s surgery began at 8 a.m. on June 25, and lasted 4ﾽ hours. Steve’s didn’t begin until about midnight and lasted three hours. Both operations went well and the brothers were able to return home in about a week. They both had some complications after their surgeries — Steve, for example had to return to AGH for a blood infection and then later for a bladder infection. But Glidewell said problems with infection and organ rejection are rather common following a transplant and neither brother faced any major post-operative complications.
For Tom, and Steve, the honor of giving and the sheer joy of living have far overshadowed any post-surgical problems they have faced.
“I gave one kidney, now two people are off dialysis,” Tom said. The Ohio man who received his kidney is doing well, he added. The two keep in touch, and Tom and Janie have had dinner with the man and his wife.
“For us six people (in the chain), it’s a miracle we got together,” Steve said. “Every week I seem to be getting stronger.”
Instead of eight hours of daily dialysis, Steve and his wife, Lucille, have been enjoying bowling. And Steve now is singing for three area choruses, including the Greater Johnstown Community Chorus and his church choir.
“They’re never home,” Janie quipped.
Steve is hoping for a break in the wintry weather so he can get back to another favorite activity. “I am looking forward to going golfing pretty soon.”