KIDNEY TRANSPLANT RECIPIENT NARRATES TOUCHING STORY

One grateful recipient, Jay Monahan, 28, received a deceased donor kidney transplant in October.

Monahan, a native of Bedford, Massachusetts, was diagnosed at age 9 with membranoproliferative glomerulonephritis. MPGN, as it is commonly called, is one of a group of conditions in which the immune system damages the kidney.

For most patients, the condition can be treated and will continue unchanged for years, though it must be routinely monitored. For some, the condition goes away on its own. However, for other patients, it leads to kidney failure.

"My kidneys failed very slowly over the course of about 10 years," Monahan said. "I started to get sick when I was a junior in high school. It was fatigue, mostly; I would have days when I couldn't even physically get out of bed."

Though he finished high school, "that was it," Monahan said. "I couldn't go to college. I was too sick."

"I had a transplant when I was 21 from my mom, which only lasted two years, and then I was on dialysis for five years until I got my second transplant in October."

The failure of his first kidney was not entirely unexpected, since close to half the people with MPGN see the disease reoccur in the transplanted kidney within five years. One recent, though small-scale, study found a 45% disease recurrence rate post-transplant.

When his first donated organ began to fail, Monahan entered a study for an off-label use of Soliris, a drug that blocks the immune system from attacking the kidney. It seemed to be working, but then the study ended. Within a month, his transplant failed, and he began dialysis while waiting for a second kidney.

"Dialysis was very difficult," Monahan said. For the first four years, he did peritoneal dialysis, in which wastes are removed from the blood by a cleansing fluid. The fluid is washed into and out of a patient's belly in cycles, with the inside lining of the belly acting as a natural filter.

"I was able to do that at home, and that was every day -- but that wasn't as bad, because I was able to do it while I slept," he said. "And then that eventually stopped working, and I had to switch to hemodialysis for the last eight months, and that was three days a week for 3½ hours."

In hemodialysis, blood is pumped out of a patient's body to an artificial kidney machine and then returned.

After his new transplant, Monahan is back on Soliris, and this time he will stay on it "indefinitely," he said.

Not only are his doctors more hopeful, his health has been pretty good.

"I went back to work within three weeks after the transplant," said Monahan, an ice hockey referee.

"I'm not sure who my donor is, but I'm going to try to find out within a few months," he said. He plans to contact the organization that procured his kidney, the New England Organ Bank, which facilitates correspondence between donor families and organ recipients.

Though at first the exchange of notes is anonymous, "when both recipients and donor families agree, direct contact information can be shared," Glazier said. She added that in some cases, patients and donor families do meet.

Though unsure what he will say, Monahan hopes to express his gratitude for the gift. And he's still thankful for his mother's generous donation; her health continues to be "great," even eight years since the procedure, he said.

"It means a lot that my mom gave me a kidney. I mean, she says it's not a big deal because any parent would do that for a child, but I still think it's a big deal," Monahan said.