A Local Teacher’s Living Donation—

Kidney Transplant Experience

Proves You Get What You Give

By Nancy K. Crevier

“You have to be generous to teach,” said Newtown High School math teacher Annette Chionilos. A giving nature is true of her colleagues, and true of herself, she added.

But last summer, Ms Chionilos took giving to a new level, donating one of her kidneys to a person she hardly knew, and receiving back the unexpected gift of life for herself.

It was nearly a year ago that the math instructor signed onto Facebook and reconnected with several of her friends from high school and college days. One of them was Sean Norton, a personal trainer at Bally’s in West Hartford. In high school, they ran with different groups, but there was some overlap. After high school, the two Southington natives continued to cross paths. “We hung out some in our 20s, but were never dating or anything,” said Ms Chionilos. Then, as so often happens, they lost touch for several years.

“We had a lot of mutual friends, and when I ran across his name on Facebook, I friended him,” she said. She was shocked to hear that he was very ill with Goodpasture’s syndrome, an autoimmune disease that affects the lungs and kidneys. By the time Mr Norton was diagnosed in 2008, his kidneys had already gone into failure.

Why she did what she did next remains a mystery, even to her. “I offered to donate one of my kidneys to him. I have no idea what brought me to the decision, but somewhere inside of me, I knew we would be a match. I had this certainty about my decision,” recalled Ms Chionilos.

“I had a premonition earlier in 2008 that I was going to have health problems,” said Mr Norton, Thursday, February 24, as he remembered the event. The usually fit health club instructor was finding it hard to keep up with his own classes, and was losing weight. He set up an appointment for a routine physical, and blood work and urinalysis indicated all was not well.

“I began to weaken, I wasn’t eating, I was tired all the time and losing more weight,” he said, all in a matter of weeks.

The diagnosis of Goodpasture’s syndrome led to a series of interventions to clear his body of toxins that had built up. By 2009, he was cleared, and Yale New Haven Hospital was able to add him to the list of patients in need of a transplant.

He was one of more than 1,200 patients on a waiting list in Connecticut for a kidney transplant. Until that happened, his life was ruled by dialysis, a mechanical method of cleansing the blood of impurities when the kidneys no longer function.

Mr Norton had been disappointed by donor offers that had failed to materialize, due to the match not working out or other considerations that made the donor unacceptable. So when Ms Chionilos made her offer, just a couple of weeks following their reconnection on Facebook, his response was positive, but guarded.

Friendships Tested

“He asked me ‘Are you sure?’ and told me there would be a lot of testing,” Ms Chionilos said. “But to me, it was like a fact, like I had no say. I never wavered,” she said.

She was prepared to undergo the intensive medical and psychological testing that would qualify her as a kidney donor for Mr Norton. What she was not prepared for was the negative response she got from many of her friends.

“People constantly told me I was crazy. They couldn’t understand why I would put my life at risk for someone I was not related to. I understand that in surgery you never know what’s going to happen. But I never had a second thought, and I knew that while I am not related to Sean, he is someone’s son, he is someone’s family,” Ms Chionilos said. The shock, she said, was the realization that most people would not do what she planned to do. “For me, this was a blip on the radar. But for someone on dialysis, [a transplant] is life-changing. Why wouldn’t I help him?” she asked.

On May 1, 2010, Mr Norton picked up Ms Chionilos after her school day, for her first round of testing. “It wasn’t awkward at all. We picked up right where we had left off,” she recalled, even though it was the first time they had seen each other face-to-face in more than ten years. “Sean and his whole family were so accommodating through the whole thing. They wouldn’t even let me pay for parking, and Sean would meet me at Yale-New Haven Hospital whenever I went for testing. Sean always had my interests at heart. We were definitely a team throughout this. He was very appreciative,” she said.

“I had a ‘wait and see’ attitude, at this point,” admitted Mr Norton. “I knew stuff could happen so that the transplant couldn’t take place, so you don’t get too excited,” he said.

The testing regimen, including at least six blood draws, showed that not only was Ms Chionilos in the best of health, but that she was a near perfect match for the kidney donation. “I was not surprised, really. I don’t know, maybe we’ll find out one day that we are distantly related. People have even told us that we look alike,” she laughed.

So far as Ms Chionilos knew when she woke up in the recovery room on July 1 following surgery, everything had gone smoothly. “They told me that my kidney took like a duck to water in Sean, that it had started right up,” she said. She was pleased to see Sean up and about. “They told me it is a more difficult recovery for the donor, and I can confirm that,” said Ms Chionilos. “We are supposed to be walking after surgery, and Sean was head and shoulders ahead of me.”

A Suspect Cyst

What the surgeons had not told her, and what she did not find out for nearly another two weeks, was that a 1.5-centimeter cyst they had noticed on her left kidney during the presurgery CAT scan — the kidney that Mr Norton received — had looked suspicious when they removed her kidney and got a better look at it. “Cysts on the kidneys are apparently very common, and they were not at all worried about it when it showed up. Nothing was ever said,” she said.

The surgeons did a “quick, on-the-spot biopsy,” she was later told. The test came back negative, so the surgeons excised the cyst and went forward with the transplant. “I know that they would never, never have done that had they suspected anything else,” said Ms Chionilos.

On July 12, she received a call from Yale-New Haven. Further testing showed that the cyst was cancerous. She had had renal cell cancer, without ever knowing it. “The surgeon felt terrible. He kept repeating to me that I was cured, but my first thought was, ‘What about Sean?’”

Recovery had been going as expected, so when Mr Norton received a call from Yale-New Haven asking him to come down and go over medication, he saw the postsurgery coordinator and, “I knew something was up.”

On hearing about the cancerous cyst, his first thought was that he would lose the kidney. “But I figured this was just something else to deal with. I did know that kidney cancer is treatable, and the surgeons reassured me that I would be able to keep the kidney,” said Mr Norton.

The diagnosis meant a second surgery for Mr Norton, to remove the margins of the cyst that remained, extending the recovery period.

Mr Norton’s next thoughts were about his friend. “When things calmed down, I put it in perspective. I realized [that if we not gone through the transplant procedure] by the time they would have found Annette’s cancer, it would have progressed a great deal,” he said.

“I was told that had the cancer not been discovered, I eventually would have become very sick. Kidney cancer is hard to detect, and often goes undetected until it is in the later stages,” Ms Chionilos said. Had she not followed her instincts and put forth the offer of one of her kidneys to Mr Norton, she may well have ended up in a life and death situation, herself.

“I don’t think I am any more intuitive than the next person. It was divinely inspired, I guess,” she said.

A Positive Experience

The experience has been extraordinarily positive, said Ms Chionilos. “I believe I am more positive. I believe that people are good, and that everything happens for a reason; and we don’t need to know the reason why. People I don’t even know have heard our story and have the kindest things to say. I have a lot more Facebook friends now,” she said, “and I got a lot of good feedback.”

She and Sean remain in touch. “We are friends. There is no romance, there never was. It feels more like a brother and sister thing, a special kind of bond. When I look at Sean, I’m so glad he’s healthy. And I’m glad to be a part of that,” said Ms Chionilos.

“I do think about what we went through,” Mr Norton said, “but I don’t dwell on it. She’s part of the family now — whether she likes it or not.”

“If I can put the word out there [about the need for donors], that would be enough. I did not expect anything in return when I offered Sean my kidney. But I got my life given to me. It’s a happy ending,” said Ms Chionilos.

According to the National Kidney Foundation, 26 million Americans have kidney disease and most do not know it. Of those diagnosed, 367,000 rely on dialysis to survive.

In the United States, 83,000 people are on the waiting list for kidney transplants. One person dies every two hours waiting for a suitable match.

Some 17,000 kidneys are donated each year, according to a Reuters report in March 2010, allowing recipients to lead normal lives. Ms Chionilos was one in approximately 6,000 people who each year become a living kidney donor.

The National Kidney Foundation notes that kidneys from a living donor are desirable, because they usually function immediately, making it easier to monitor.

A living donor can also be tested ahead of time for compatibility, and surgery can be conveniently scheduled.

To make a donation to support research, patient service activities, and education about chronic kidney disease, or to find out about becoming a living donor, visit www.kidney.org.