Sean Toomey has four kidneys

For Toomey family, a celebration of life
Wed Oct 28, 2009, 10:11 AM EDT

Amesbury, Mass. - Sean Toomey has four kidneys.

The story of how the 29-year-old came to have four of these precious organs in his body is full of hope and disappointment, with a happy ending.

Raised in Amesbury, the son of Cathy Toomey, broker/owner of Stone Ridge Properties, Sean now lives with his wife, Sarah, in nearby Salisbury Beach and is managing partner of Flatbread Company in Bedford.

He was born with two perfectly healthy kidneys, but Sean began suffering from muscle aches at 20, when he was a college athlete. In the fall of 2000, after suffering from leg muscle aches and a bad cough, he was diagnosed with severe pneumonia. He responded well to antibiotics and thought the problem was behind him, but a few months later, all of Toomey’s symptoms returned with a vengeance.

Never the same again

On June 23, 2001, he was seen at Lahey Burlington.

“His life was forever altered from that day forward,” his mother said. “On Monday, the 25th, he had his first appointment. We went to the Sox game after, and when we got home, there was a message that his kidney values were bad, and they scheduled him for an appointment the next day with a nephrologist.

“On Tuesday, we met Dr. Hannah Gilligan for the first time. Now we think of her as practically family,” Cathy Toomey said.

After a kidney biopsy, Sean was admitted to Lahey and had an extensive series of tests.

“On Friday, June 28, three doctors came into Sean’s room and gave us the diagnosis of vasculitis (an autoimmune disease),” his mother said. “We really didn’t know what that meant but the expressions on their faces told us it was bad.

“The race was on to eliminate the disease and to try to save the kidneys,” she said.

By September, Toomey was on peritoneal dialysis; by the end of the year, he was put on hemodialysis, spending three days a week sitting in a chair to have his blood cleaned. A year and a half passed. Finally, on April 16, 2003, Sean Toomey received a kidney transplant from his mother.

“The first time around, you know pretty much that, if you have compatible blood types, your mother is going to be a match,” Sean said. “My father has pre-existing medical conditions that disqualified him, but my mother and two of her sisters were qualified.”

“As a parent, it’s no decision,” Cathy Toomey said, “and for my sisters, it was the same way. It was a no brainer. I went into the hospital on a Wednesday morning and was discharged on Sunday afternoon. For another week, I was at home and uncomfortable, but then could go back to work. They take out the kidney laparoscopically, so I just have five little incisions.”

Sean recalled, “After the transplant, I went to Lahey every other day to be checked. It was clear the kidney was working well but not perfectly. I felt like a normal person, but the writing was on the wall. A kidney transplant will last from three to five years up to 30 years.

“Unfortunately, things didn’t work perfectly, so I only got five years out of the kidney,” he said. Once his mother’s donated kidney started to fail, the doctors ran tests and discovered antibodies that were attacking the kidney. Usually these antibodies appear in the screening process or immediately post-surgery.

“In a very rare case, mine, the antibodies appear two to three years after the transplant,” Sean said. “Because there is a genetic link in antibodies, this ruled out all family donors. My large extended family was now out of the pool of potential donors. It was a devastating moment.”

Forced to look elsewhere

“I was profoundly disappointed and profoundly sad,” his mother said. “For the two years he was sick, we were focusing on the transplant. Then we had to go through it all again.”

From July 2008 through April 2009, Sean was on hemodialysis three times a week again, awaiting another kidney donation. According to the Scientific Registry of Transplant Recipients, there were almost 81,000 people on the waiting list for a new kidney at the end of 2008. During that year only 16,500 kidneys were donated.

“Someone like me, who has a great network of friends, goes to friends first,” Sean said. “Dozens and dozens and dozens of people stepped up to offer to donate. We found out how many good people we have in our lives.”

The donor transplant coordinator at Lahey first looked at potential donors in Sean’s age bracket, preferably male and of similar size.

“They are focused on the donor,” he said, “and how the loss of a kidney will affect the donor on a long-term basis.”

With only two weeks to go before the scheduled transplant surgery, a close childhood friend of Toomey was ruled out as a donor due to slightly elevated blood pressure.

“Another friend, my wife’s best friend’s husband, stepped forward,” Sean said. “He was totally focused on doing this, and everything was great. We’re less than a week away from surgery when they repeated all the blood tests just to check again, and the antibodies were present.

“In June, I’m thinking that, in December, my kidney will fail. By the end of July, the kidney is gone and I’m on dialysis, and I’m thinking, by late August, I’m going to have the transplant, and that one falls through. The second surgery fell through in early December.”

In the meantime Toomey is undergoing dialysis at Lahey three times a week, 6 a.m. to noon, and then working at Flatbread Company 4 p.m. to midnight. The doctors confer and decide that, due to the antibody complications, they have to rule out the entire northern European gene pool as potential donors.

“Massachusetts is a melting pot for northern Europe,” Sean Toomey said. “Now I really don’t know what to do, but the doctors tell me someone is anonymously going through the testing process.

“Then, out of nowhere, one of my employees at the restaurant told me she was the one going through the testing process, and that she was almost done. She is of Latin American heritage and incredibly healthy. All the tests were compatible.”

Sean received her kidney on April 22, and recovered quickly. “It was smooth as butter, baby,” he said. “My blood work looks like a normal person, almost, and I feel like a million dollars.”

“He’s a four-kidney guy,” his mother said. “The two original kidneys have no function, mine has less than 50 percent function, and the new kidney is working beautifully. We are extremely, extremely appreciative of the donor. It’s incredible.”

By mid-May, Sean was back at work, and three months later, in August, he was married at Maudslay State Park. “When they got to the part when they said ‘in sickness and in health,’ the bride just started crying,” Cathy Toomey said. “For us, the wedding was a celebration of his new life, more than just a wedding.”

http://www.wickedlocal.com/newburyport/news/x665153298/For-Toomey-family-a-celebration-of-life