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Tufts Medical Center Helps Two Generations Survive Hereditary Life-threatening Kidney Disease

Meg Brogan was an actress in California when she discovered three years ago that she needed a life-saving kidney transplant to treat a rare hereditary kidney disease. She could have had the operation there, but chose to return to Massachusetts to be treated by the same specialists at Tufts Medical Center who had cared for her father years earlier.

She turned to Tufts Medical Center Nephrology Chief Andrew Levey, MD, and his team not just for the high quality care she knew she would receive but also because of how close her family is with them.

“We have such a history with this tremendous group that it made sense for her to do it here in Boston,” says Meg’s father, John Brogan.

This is typical of the care provided and relationships that develop, Dr. Levey says.

“We really care about our patients. We care what happens to them,” he explains. “The course of kidney disease is very long and you become close as you develop an appreciation for what makes them and their families unique.”

Unraveling a Family’s Medical Mystery

Meg’s father first came to Tufts Medical Center in 1979 when he began experiencing kidney failure symptoms. Dr. Levey, a fellow at the time, delved deep into the family’s medical records to piece together the hereditary nature of the disease.

Meg’s grandmother had needed two kidney transplants while living in Cleveland. Her great-grandmother may also have had the disease.

“That’s part of taking care of people with kidney disease,” Dr. Levey says. “We track down whatever clues we can.”

As doctors treated Meg’s father, they extended their care to his family, testing his children for the disease. Of the three, only Meg had it. She had no symptoms then, but knew to be looking out.

Comprehensive Care with Personal Attention

Meanwhile, John’s condition grew worse. He once had run two or three marathons a year, but as the disease took hold, he got tired just from climbing stairs. He routinely slept 14 hours a day as he had regular dialysis treatments for eight months.

Finally, he was able to get a new kidney from his sister.

“It’s truly a miracle,” John says. “You go from being extremely sick to within 40 hours feeling great.”

The transplant program developed in 1971 has grown and advanced with medical breakthroughs and technology, but the commitment to giving each individual patient personal attention along with the best care possible remains the center point.

In talking about the quality of the program, John notes that Dr. Levey used it when his own wife developed kidney disease and needed a transplant. Although Dr. Levey wasn’t a match for her, he donated a kidney as part of a six-person swap that set her up with a donor who was.

Planning for Better Outcomes

When Meg began experiencing symptoms of kidney failure, Dr. Levey and his team quickly made plans so that she was able to have a transplant without needing dialysis.

“We like to be ahead of our patients’ needs,” Dr. Levey explains. “We like to have a plan worked out in advance to make transitions in care predictable as patients move through the long course of kidney disease.”

Meg was assigned a transplant coordinator to help her work through the complex process. Her sister, Chrissy, who was her donor, was assigned her own patient advocate.

“It is important that we do all we can to look after the interests of both the donor and the recipient,” Dr. Levey says.

Another important aspect of personalized care is assigning patients the same attending physician for before, during and after the procedure.

“This way, you have someone who knows you, who understands how you see things and understands your personal preferences for care,” Dr. Levey says.

This was especially important to Meg who wanted to do have the transplant without steroids, a request Tufts Medical Center doctors were willing to accommodate.

Meg’s surgery went smoothly and she is now back acting.

“I was very nervous about the transplant,” she says “I couldn’t imagine having a normal life on the other side. Now that I’m on the other side, my life is better. I’m glad there were people who understood my concerns and were there to take care of me.”